Your story sounds so similar to mine. While I've had small symptoms for years (shaky left hand and arm, slightly slower left leg when I walk), with the persistence of my girlfriend to go get tested, I just got officially diagnosed with "early on-set of Parkinsonism" four days ago after getting a DAT Scan. I found it interesting that the neurologist said to come back in six months unless new symptoms appear. Maybe I'm being too optimistic, but I like to think that's a good sign when the doctor didn't seem overly concerned about it. I've told two of my best friends about it, but I'm hesitant to tell my mother because I don't want her to worry herself sick over it. I'm also VERY hesitant to tell my boss...so far the symptoms haven't affected my job thank God, but I don't want to start getting watched like a hawk at the workplace. Anyway, I'm almost 51, but I can recall symptoms dating back years ago, so there's no telling when the condition actually set in for me. Getting diagnosed has caused me to start seeing a whole lot of things in life through a different lens though. For instance, it makes me love and appreciate family and friends more than I have before.
Yay for the persistent girlfriend! And be optimistic even if things get tough, it's better for the brain. I am not sure about telling your boss....you will know when the time is right. It took me years to go public, I told only close friends and family. I feared telling the man I rented the building for my pub....worried he wouldn't want to renew the lease if he knew. I found my fears to mostly unwarranted but there are people who aren't going to understand. Trust that you will know when it's time and that you shouldn't feel like you have to share it until you are ready. It's so true about the awakening to the importance family and friends, and for me how short life really is. But we still have time to make the most of it!🥰
@@ParkinsonsWigglesProject Thank you for the warm and thoughtful reply. And yes I agree: yay for the persistent girlfriend! Ironically just earlier today she apologized for doing it because I got bad news. I think somewhere deep down she's blaming herself for me getting the illness, but I think she's just thinking emotionally and not logically...which to be fair we're all prone to do at times. I tried to ease her mind about it...not sure if I was successful... Anyway, what makes my girlfriend's reason for being so persistent extra interesting is that she claims she got the urge to do it from a vision she had late one night...not a dream because she was still awake...but a vision that came to her. She said that she heard an unidentified male voice say the word "Parkinson's" and then she saw my face. I haven't seen enough of your videos to know where you stand spiritually, or even if you're spiritual at all, so make of that what you will. And thank you for the assurance on when or if I should let others know. I'll definitely have to take things on a person-by-person basis. You've got a good thing going here ma'am, and you're also a very well-educated and a very likeable person to boot. May God bless you in all your endeavors. Thanks so much and...Subscribed. 😎👍
@@LouGojira2 Dreams/Visions are experienced by an individual and while they can be shared, they can't be proven. Nonetheless it doesn't make them not real for the person who has them. You girlfriend clearly had a sense and an answer came to her. She absolutely shouldn't feel guilty, because like any health issue, it's always good to begin treatment sooner than later. It will take time to reassure her but you can manage PD and live a good life while it progresses. We all progress differently but there are things you can do that are "neuroprotective, like exercise, diet, and I am a big believer in mental health and not letting stress get to you! Exercise is one of the best things you can do for PD!! Thank you so much for your kind words and subscribing and sharing your story with others!! We learn from each other 🥰
I've had incredible trouble with a bad chronic pain in my chest for just over a decade, over time it's gotten worse. And now I've got the beginning symptoms of YOPD. It's difficult to see the symptoms sometimes and it's hard to tell though the other problem. I've got an extremely good neurologist helping me. Thank you for explaining how it happened for you. After being ill for so long I often just overlook or ignore things because I'm worried about coming across as a hypochondriac and losing a good dr. After seeing how it happened for you I'm going to start to pay more attention, Thank you.
So sorry to hear about the chronic pain and new YOPD symptoms! It's super important that we communicate our issues with our doctor to try and catch what we can as soon as possible. Easier said than done but have a "extremely good neurologist" is a great start to finding out what is going on. Thank you for sharing your story!
Hi Jennifer, thanks for this channel! I thought the “light was at the end of the tunnel” when I got in front of a young-ish MDS back in April this year (…after 4.5 years of progressively worse symptoms & countless specialists, including a sleep-wake neurologist). After 2 months of tests & a follow-up yesterday that didn’t feel as nearly professional as my initial consultation, I’m realizing my journey continues. I’m upset & frustrated! I’d watched this particular WP video back in March & was glad to do so again. Thanks for reminding me it’s rarely simple, especially when we’re young women.
Goodness I wish it was simple!! As you are discovering, it's not. Saying hang in there is enough when I know how frustrating trying to find the answers can be, but patience and perseverance and finding the right neurologist/mds is what it will take. Best wishes to you on your journey!
Thank you very much for sharing this! Just subscribed to your channel. So, I got my diagnostics 9 days ago... it all started (and so far it is the only symptom) with an annoying tremor around my left hand thumb. As I'm left handed and also use the mouse left-handed, that was quite a bad inconvenience. My first neurologist was more convinced that it could be some kind of muscular imbalance, and so I sticked with physiotherapy and chiropractics, but did not obtain any improvement. He then referred me to a motor disorder specialized neurologist that in 10 minutes found so many triggers for the tremor and then asked me like "do you want to make an exam and know the answer or do you prefer to wait?" and then I knew it... after a DAT-SPECT scan, the confirmation came and so I'm mentally processing it since then. Thank you for sharing your experience!
Thank you so much for sharing your experience! It's tough to hear that it's impacting your left side, because you're left handed. I have to say that I think all the people I know with PD is the opposite, but now I am going to start asking and actually may do a video on the subject to see what kind of comments come in. It sounds to me like you got referred to a great MDS which is always great to hear! You have Parkinson's is something no one wants to be told....you look young as well...hang in there and find a YOPD support group if you are under 50, it's so important to know others with the disease! 🥰
like your RUclips video I was diagnosed at in 2004 at age 30. I would like to share more about my diagnoses but will have to write something in a little more detail soon, just wanted to say Hi.
Hello and thank you for sharing! In the beginning I kept a lot to myself...there were people I could talk to for sure, but as of late, now that I have been opening up about it, I find it quite helpful. So yes, you should absolutely write something :)
I am in the process of getting a diagnosis for left sided weakness and tremors. First neuro saying anxiety but similar to you I can’t wiggle my toes or curl left foot. Movement is limited. This video is helpful in understanding the process of getting a diagnosis and knowing some symptoms.
It's not an easy time when trying to figure out what the hell is going on with our body. Some women encounter the it's in your head doctors, so be patient if you do. Thank you for your comment and sharing your story with our Parkinson's community. Sending love your way on your journey to finding the answer!! ♥
Thank you for sharing your PD story. My journey with PD started about 2013 (today is 2024 and I am 77 years of age) when my sense of taste and smell was much reduced, perhaps 80%. I ignored it for a year, thinking it may be due to medications I was taking or that it would just be temporary. About a year later I decided to do a Google search for the cause. The internet response was it's usually due to some sinus issue - or it could be Parkinson's! Oh that's interesting. I looked for the top ten PD symptom list and determined I had several of those issues. Over the following years PD would add symptoms to the list. They all come and go, some lasting only hours, some weeks or months. My older brother sent we siblings information that he had not only prostate cancer but also Parkinson's which was diagnosed at the Mayo Clinic. A couple of years later brother Jim died of cancer but was quite deep into his PD motor symptoms. The major difference between Jim and I is all of my symptoms are non-motor, even today months after a skin biopsy returned positive for PD I still do not have visible motor symptoms. But they are coming. For the next years I researched PD, flip flopping the certainty that I had it or not. About 7 or 8 years into the process I finally decided to see a movement specialist who said, "You don't have Parkinson's but you have something". Then the pandemic hit and I cancelled all of my doctor appointments. three more years went by. I had the DatScan and then the skin biopsy (about Sept 2023). Both were positive for PD. I was elated. After about 10 years of tracking 25 symptoms I finally had an answer. It may sound silly that I was so pleased that I finally had an answer roughly 10 years into the disease. I was a little angry because I had so many symptoms (which strengthened and weakened individually over time). But the common thinking was you must have this short list of motor symptoms to be declared diagnosed with the disease. Hogwash. Without the DatScan and skin biopsy I was pretty certain I had PD. They say by the time you are diagnosed you are about 50% into the disease. Well I expect things are changing. The medical community is slowly giving up on the "clinical diagnosis" because we now have a test. So here I sit today. Void of any outward symptoms. No pain. No tremor. Not taking any meds. But I think I've had hand tremor for just a few seconds weeks apart. My real challenges are I have MCI, constipation, REM sleep disorder, slight balance issues, taste and smell issues, incontinence, fatigue, apathy (not normal for me), anxiety (also not normal for me), and a dozen more. For the past year I've done an exercise program lasting 50 minutes per day. I go to the gym seven times each week when possible. Exercise has had a dramatic effect on me. I can do squats which I haven't been able to do for 40 years.
Hey Jenifer I’m 21 years old and from February 2023 I have tremors in my left arm when I’m relaxed and I’m moving little bit slower than usual I don’t know what to do?
Hello! Two things....make and an appt with your primary care doctor and don't worry yourself!! Stress and worry will not help. While it can happen it is very rare for someone so young to have PD. Talk with your doctor and see what they have to say 🥰
Hello &. Thank you so much!! I know the feeling but promise, as much as we don't want to hear those words, having Parkinson's is not the end. I thought so too, but was wrong. A big challenge yes, but not the end 🥰
Yes we are! I just met with a new client and my wiggles were crazy! He didn’t care 🤗 I should make a video with the symptoms I struggle most with next. Editing and timing when I record is key. I have good and bad days…today the dyskinesia is bad. Thank you so much for watching the video and commenting!! 💕
Have you tried PEMF therapy? I had a brain injury that gave me parkison's symptoms. Best thing that helped was PEMF therapy (with a very powerful PEMF machine). Made a huge difference.
@@ParkinsonsWigglesProject These machines are typically found in chiropracters offices, heals all types of injuries. In my case the PEMF coils were placed on back of head/neck--worked like a charm.
How old were you when you started noticing these symptoms? And did they ever do a DATScan when you were seeing all these neurologists? Thanks in advance. Going through something similar….
Hi Issac! I was 38 when the motor symptoms became clear. Once I saw a movement disorder specialist (MDS) at Stanford and she had confirmed what the first neurologist' diagnosis, and I had tried carbidopa/levodopa that the multiple sclerosis specialist had prescribed and it made all of my symptoms essentially disappear I knew and agreed that it was Parkinson's. The MDS offered the scan but I felt it wasn't necessary. Looking back I would have said yes. Hope that helps! 🥰
I'm 65 have been struggling with fatigue, joint pain and tremor. Sometimes shaking vigorously. My gynae referred me to our neurologist whom couldn't find anything. I had to see the neurosurgeon for my neck and lower back and when he did the nerve test saw my tremor and told me I have PD. He is not addressing the tremor but my neck and back. What now
Find/get a referral to see a Movement Disorder Specialist. They are neurologists who focus on Parkinson's disease. Depending on where you live they can be in short supply. I drive 1 hour and 45 minutes to see mine, but it's worth it. I know it's a challenging time, hang in there ♥
Your story is so similar to mine. 1st doctor (a general Neurologist) said PD without a doubt. 2nd opinion (MDS) said drug-induced. 3rd opinion (Top MDS at Rush Chicago) said probably MSA or Corticbasal Syndrome. Too many different opinions!!! Finally started on Sinemet and DaTScan. It was PD. It is amazing to me how different each doctor saw my symptoms. It took a full year of various doctors, tests, lots of $, and major anxiety to figure it out.
I’m from Chicago, sounds like you’re near the big city as well! I wish I knew going into it how challenging it can be to diagnose YOPD. It’s stressful, time consuming, and expensive. Thank you for sharing your experience!! 💕
Danna, if you are willing, could you describe how your symptoms started and progressed over time? I have no right arm swing, severe pain in my neck back with headaches, excessive sweating, scream in my sleep, cogwheel rigidity in my right wrist and arm, shuffle when I walk, stooped posture, slight tremor in my right thumb and first finger, nausea, very stiff and ridged, lots of pain in my feet like cramps as well as depression and anxiety. I take no mediations, so mine shouldn't be drug induced. Thanks so much.
My left foot does too… but I haven’t been diagnosed. I start to wonder, both my parents had it. So I’m curious what the symptoms are. If I fit, or is there a better way to figure it out.
I would recommend not self diagnosing as tempting as it is....Figuring it out is a journey. The first neurologist like I say in the video was right, he knew it was YOPD but it was my wanting a second opinion that drew it out. At the time that is what I needed to do to come to terms and agree...we don't have the benefit of hindsight when we are in the midst of our search for the answer. You will find yours! The Michael J Fox Foundation is a great resource to see what the symptoms are. Just know that each of us truly has our own experience with PD. For example my tremor is not present, maybe 1-2% of the time if that, but I have gait issues. Someone else could have the opposite, dominant tremor and no gait issues. This adds to the challenges of getting a diagnosis, and especially for YOPD. Thank you for sharing Thomas!!
It's really hard at first and scary, yes....but it can be managed and you still have time to live life! Take seriously recommendations for exercise to slow progression and I believe that finding your mental health ninja to fight back depression, worry, and fears. I went to a therapist to help me process my diagnosis and it was one of the best decisions I have ever made 🥰
i was recently diagnosed with Parkinson’s disease May 2021. About two years ago or so i noticed some changes, i just could not put my finger on it. Slightly hunched over and walking funny because my balance was off. My joints ached and snapped like twigs making loud echoing noises in the room , stiffness and pain. Last fall i noticed a slight tremor in my left hand. Symptoms progressed by March the tremor became worse that’s when i started doing research and discovered what was going on with me. In May i got my diagnosis. The medications are helping, i do feel better, but still have some joint pain and stiffness, tremor is a lot better. When having an “off” episode i feel like I’m in severe pain and frozen, my tremor becomes worse. Although people in my family noticed some things in my walking and speech, such as slurred and stuttering speech, i did not tell them about the tremor. Know body even suspected Parkinson’s disease, not even me. At first I thought I might have MS or MD, I even thought ALS. I’ve had three Doctors officially diagnose me with having Parkinson’s disease. I’ve been off work since May, I’m trying to get back to my job but my doctor has put return to work restrictions which my company can not accommodate. I’m working with the state Vocational Rehabilitation to see if i can safely return to work without restrictions. I will be filing for SSDI this month. I’ve never had this much depression and anxiety my entire life. God has a sense of humor.
I am very sorry to hear about your struggles but know that it can get better! When I was diagnosed I decided to find a therapist and specifically a cognitive behavioral therapist to help me work through what my diagnosis meant for my career, for finding love, and to help me process all of my fears. It was one of the best decisions I've ever made!! It's an investment, and you have to be patient and find the right therapist for you. I tried someone else while I was on her waiting list and it wasn't a good fit. The way that I see it, the diagnosis is a big deal and naturally one will feel anxious and depressed, but you absolutely can work through it and believe it or not, live happily with Parkinson's. It's not easy but something just clicked in me regarding my own depression...I was done being sad, and life is short, so I decided to do everything I can to keep things in perspective...take it day by day to not overwhelm myself...and make the most of every day. Also, stress as we know is a killer and finding a healthy state of mind will no doubt make you healthier overall. Hang in there, be kind and patient with yourself, and work thru the work stuff, you will get thru it!!
@@ParkinsonsWigglesProject very encouraging words, I’m greatly appreciative. I know I’ll be okay, I’m struggling but I’ll make it. It’s just sad to see a guy like me go from being happy, to the tears of a clown. God sure does have a sense of humor
@@ParkinsonsWigglesProject Your video and this comment are very helpful to me. I actually took a screen shot of you and your comment and put it in my “notes” on my phone under the title, Stay Strong. I’m 46. I realized I have PD at 45 but symptoms started at 40 or earlier. My mantra is “Golden Years Now.” No more postponing adventures and joy; I’m squeezing as much in while I still can. Thank you for your new channel. You are relatable and inspiring.
@@Rosie_Apple_Delight Thank you for your kind comment and I am happy to hear that something I've said in someone's notes under "Stay Strong" : ) That's wonderful!! Indeed you must be strong and treasure and find joy everyday, it's there for all of us, even those of us who have Parkinson's. Please stay in touch to share you journey and wisdom that you learn along your way!
I had Covered California, which came about after the Affordable Care Act was passed. Being self employed this was a great option!!! So thankful for it!!! At the time I believe visits to my primary care doctor were $25 for the copay and specialists ranged from $40-$75 depending. I would say over that 7 month period 12/13 diagnosis - 6/14 finally confirmation, between $450-$600 in copays. Somewhere in that range, it's been a while but I think this is a good estimate.
I have tremors in my left hand and I drag my left foot when I get tired and now my left eye twitches. My husband says my mood is more unpredictable and I seem to be bothered by loud noises and chaos more. But right now I feel like it's kind of just my imagination, even though it's not. I'm 39. I don't know if I want to go to the trouble of worrying about it. The only symptom that I don't like is the lack of motivation, energy and muscle stiffness and pain in the morning.
Thank you for your video. I am trying to get a diagnosis and really struggling with getting answers. I have been detreating since August 2019 and have seen over 15 different doctors with several different diagnosis. I started having severe headaches in 2019 that were unlike my regular migraines. As well as severe fatigue, vision issues, rigidity, stiff muscles and the worst neck, head and shoulder pain. I started sweating from my hands and feet like crazy and can't control my temperature. My right arm no longer swings when I walk and my right leg doesn't move much when I walk. I scream in my sleep and roll all night long. I have constant stomach pain and nausea. My movements have become very slow and small. I haven't noticed my hand writing changing that much or my smell going away. I am almost completely homebound and might have to quit work as a director at a college. I recently ended up at UT southwestern in Dallas and saw a neuro-ophthalmologist. She thinks I may have a leak in my spinal cord that might cause all of these symptoms. However, she also thinks it could be PD or a form of parkinsonism as I also have autonomic disfunction. i.e. can't control my sweating or my BP. They did a blood patch in my spine to see if it helped the symptoms with no change. I am curious if you have and headaches, sweating, or other symptoms as I do?
Sorry to hear about your troubles getting a diagnosis Kevin! Have you discussed with your doctors seeing a movement disorder specialist? I highly recommend seeing one as they specialize in Parkinson's....I saw two MDS and one said it was a stress induced tremor and the other confirmed the very first diagnosis I got from a neurologist which was PD. During my diagnosis my left arm stopped swinging unless I focused on swinging it, I had the foot dragging, an intention tremor, and a change in my writing . I acted out some of my dreams, like kicking my husband but it was so infrequent that I didn't associate it with PD. I didn't have any headaches but that doesn't mean anything because each of us has our own PD story and symptoms. It sounds like you've been very patient and I recommend keep being patient and determined and get a referral to a movement disorder specialist! Let me know how it all goes and hang in there : ) and thank you for sharing your story with us in the Parkinson's community with your comment!!
The Neurologist mentioned me seeing a MdS at some point but they are so focused on trying to help the headaches as they are liyterly around the clock. I also have cogwheel in my right arm. I have all the symptoms of a spinal leak and the signs of PD. I am so ill, I just can't wait for months or years to try and figure this out. Thank you for your response.
@@kevinsomers8923 I would ask see a MDS, now in my experience it ended up kind of throwing me for a loop but it worked out in the end. Every situation is so different and personal. We want to make the right decisions regarding our health, and remember that you can and should advocate for yourself if you think seeing an MDS is the best decision for you. You can be respectful of your current doctors and advocate for yourself. Hope that makes sense and that you find relief soon!!!!
I agree with you and I am going to ask for a MDS as well as the other testing they are planning. I just feel like I am running out of time. I so appreciate your advice and support. ❤️
@Kevin Somers. I am 32 and have all the same symptoms, Kevin but I also have brain fog, swallowing problems, and other small issues as well. My tremor is slight and seems to be worse in the morning and speech problems. I get very weak and tired in the heat (don't know if pd does that) but I've been searching for a diagnosis for a year and a half now. I have a cervical MRI coming up but so far my head MRI and other tests have all been negative. I'm sorry to hear you're struggling. I would say the hardest part is being young and doctors not understanding or believing me even when they see it with their own eyes. They keep running tests when I ask for them but they're at a point now where they just say idk what it is, must be psychological. I hope you get a diagnosis soon. I keep saying the same thing, that I can't go another year or more begging doctors to listen and help me. It is rough. It's lonely especially when people don't understand that just walking or talking with them is draining and not even having an explanation for them. Best of luck to you. When you get a diagnosis would you update us?
I think neurologists are vastly under utilizing the DaTscan. A DaTscan doesn't confirm Parkinsons, but it confirms that you have a dopamine deficiency in the brain. There are about 5 diseases related to dopamine deficiencies in the brain, with Parkinsons being the most common. My first neurologist ran all the tests you had done (wiggle your tows, let me see you walk, tap your fingers) and then guessed I had PLS, a precursor to ALS. She never told me about the DaTscan, which would have ruled out PLS/ALS. I was freaked out by the PLS diagnosis as the outcome is much worse than Parkinsons. My second opinion neurologist immediately said "get a DaTscan". The DaTscan confirmed my dopamine deficiency and ruled out other possible diseases such as MS or PLS. He then pretty confidently said I had Parkinsons. The DaTscan is expensive, as it cost me about $4500 (almost all of my insurance deductible for the year), but well worth it.
Wow, I would have been freaked out too!! I wish I had taken up my doctors offer because in the beginning they (scans) can be justified, they are soooooo expensive! Thank you 🤗
Hi there. I haven't seen a GP in years so I'm currently yet to be diagnosed but i'm pretty sure this is what has been wrong with me over the past few years. I have ways of copping with the symptoms but I have all the symptoms. I don't like medicine or doctors so i'm going to just try to keep going but its past two am and i'll be up till at least seven, I wish there was somebody awake to talk to. hmm. anyway thanks for your story its very interesting it has certainly made me think. not very clearly but that's nothing new. ha ha anyway thanks for your post.
Thank you for your comment! I have had bad experiences with doctors but know that there are great doctors out there, who yes may be a challenge to find but they are out there. Also if you have Parkinson's from my experience you are going to need a great doctor!!! Have you heard of Parkinsonism? Until you are diagnosed you may be "pretty sure" that you have PD but until it's official you won't know for certain. I wish you the best on your journey to getting the right diagnosis! And keep us posted!!🥰
For the best part of 16years iv been thinking my spine has been the cause of all my symptoms eg very unstable blood pressure mussel pain and weekness cramping hands and legs and did not think much about the right hand tremmer over the years iv seen so many doctors found I had spinal stenosis in my neck and have been told can't be causing the mussel loss and tremmer as on wrong side getting a dat scan I'll see what happens ow and the neurologist sent me a 2 page letter still trying to understand some of the medical terminology
Hi Kevin! The medical terminology is totally overwhelming at first, hopefully your neurologist will go over what all of it means and a dat scan will help as well. I try for every appointment with my neurologist to have questions written out and to be as organized as I can. Otherwise I forget to ask important questions.
@@ParkinsonsWigglesProject hi thanks for responding my memory is let's say bonkers I forget wher I put stuff all the time and not remembering name's of new people IV started lists for shopping lol or I always come back with out something
Great things Dr Madida on RUclips has being doing for mankind, I undergo his Parkinson disease treatment plan for weeks and my Parkinson Disease was completely reversed.🎉
Hello, i am 24 years old and notice my first symptons at 2020, i have tremors in my left hand and legs, i did the dat scan with normal results, but i think that i have young parkinson disease, my tremors its getting worse day by day. Sorry for my english its not my native language.
According to the Parkinson's Foundation if your DAT scan is normal it means you don't have Parkinson's. I am not a doctor!! But I wouldn't worry about YOPD. There are many other reasons for tremors. If you can find a Movement Disorder Specialist to see, they specialize in Parkinson's, this is an option to explore as you try to figure out what is the reason for your tremors. I know it's not an easy time so I wish you the best on your journey trying to find the answer 💕www.parkinson.org/understanding-parkinsons/getting-diagnosed#:~:text=A%20DaTscan%20involves%20injection%20of,person%20does%20not%20have%20Parkinson's.
If you watched my diagnosis video I put myself through some extra trouble by wanting a second opinion, but I wanted to be certain. The first neurologist told me right away, and was confident. Once MS was ruled out for me by a MS specialist a Stanford, I knew. And with the Levodopa test and how quickly I responded I really knew it was PD. I have heard from many women that doctors have said their symptoms are in their heads. I think young women especially can find getting a diagnosis more challenging. But not always!!
@@mobi4138 Walking is mine when I am off. I bought a small hot tub years ago that I can't live without!! Have only a standing shower but there's nothing like a hot soak for the muscles!!
@@ParkinsonsWigglesProject Do you have reduced blinking? Just watched a video by Dr. Steve McGee where he says he diagnose bradykinesia by counting eye blinking. 🤔
@@bash547 hmmm, my eyes blink normally, I think 🙃 but since everything slows down I could see that helping with diagnosis but usually there would be other symptoms as well I would think, like reduced arm swing, but I’m not a doctor so!?
I wonder in the doctor’s community, do they provide feedback when a doctor provides the wrong diagnosis? I know nobody is perfect, but the second doctor could had wasted a lot of your time and money if the specialist didn’t question why you needed his or her treatment when the first doctor and the specialist felt you had Parkinson’s.
You would think they would provide feedback, but my guess is no. It's unfortunate but I do understand that diagnosing can be tricky...but it was clear. Thank you for your comment ❤️
Hi Jennifer, thanks for this channel! I thought the “light was at the end of the tunnel” when I got in front of a young-ish MDS back in April this year (…after 4.5 years of progressively worse symptoms & countless specialists, including a sleep-wake neurologist). After 2 months of tests & a follow-up yesterday that didn’t feel as nearly professional as my initial consultation, I’m realizing my journey continues. I’m upset & frustrated! I’d watched this particular WP video back in March & was glad to do so again. Thanks for reminding me it’s rarely simple, especially when we’re young women.
Hello! I wish I could say the journey is easy but it’s not. Finding a cognitive behavioral therapist for me was a game changer. I connected with her, and she spoke a language that helped guide me to find acceptance…and as the years have gone by I understand my body more clearly than I did in the beginning. I hope that you find your good place of being with Parkinson’s and finding the right doctors, and building your support system takes time, you will get there 🦋💜
@@ParkinsonsWigglesProject Thanks for the quick reply! I do have a new therapist who’s worked with HD patients. She is wonderful! My own Mind Ninja 🧠🥷☺️
Your story sounds so similar to mine. While I've had small symptoms for years (shaky left hand and arm, slightly slower left leg when I walk), with the persistence of my girlfriend to go get tested, I just got officially diagnosed with "early on-set of Parkinsonism" four days ago after getting a DAT Scan. I found it interesting that the neurologist said to come back in six months unless new symptoms appear.
Maybe I'm being too optimistic, but I like to think that's a good sign when the doctor didn't seem overly concerned about it.
I've told two of my best friends about it, but I'm hesitant to tell my mother because I don't want her to worry herself sick over it. I'm also VERY hesitant to tell my boss...so far the symptoms haven't affected my job thank God, but I don't want to start getting watched like a hawk at the workplace.
Anyway, I'm almost 51, but I can recall symptoms dating back years ago, so there's no telling when the condition actually set in for me. Getting diagnosed has caused me to start seeing a whole lot of things in life through a different lens though. For instance, it makes me love and appreciate family and friends more than I have before.
Yay for the persistent girlfriend! And be optimistic even if things get tough, it's better for the brain. I am not sure about telling your boss....you will know when the time is right. It took me years to go public, I told only close friends and family. I feared telling the man I rented the building for my pub....worried he wouldn't want to renew the lease if he knew. I found my fears to mostly unwarranted but there are people who aren't going to understand. Trust that you will know when it's time and that you shouldn't feel like you have to share it until you are ready. It's so true about the awakening to the importance family and friends, and for me how short life really is. But we still have time to make the most of it!🥰
@@ParkinsonsWigglesProject Thank you for the warm and thoughtful reply. And yes I agree: yay for the persistent girlfriend! Ironically just earlier today she apologized for doing it because I got bad news. I think somewhere deep down she's blaming herself for me getting the illness, but I think she's just thinking emotionally and not logically...which to be fair we're all prone to do at times. I tried to ease her mind about it...not sure if I was successful...
Anyway, what makes my girlfriend's reason for being so persistent extra interesting is that she claims she got the urge to do it from a vision she had late one night...not a dream because she was still awake...but a vision that came to her. She said that she heard an unidentified male voice say the word "Parkinson's" and then she saw my face. I haven't seen enough of your videos to know where you stand spiritually, or even if you're spiritual at all, so make of that what you will.
And thank you for the assurance on when or if I should let others know. I'll definitely have to take things on a person-by-person basis.
You've got a good thing going here ma'am, and you're also a very well-educated and a very likeable person to boot. May God bless you in all your endeavors.
Thanks so much and...Subscribed. 😎👍
@@LouGojira2 Dreams/Visions are experienced by an individual and while they can be shared, they can't be proven. Nonetheless it doesn't make them not real for the person who has them. You girlfriend clearly had a sense and an answer came to her. She absolutely shouldn't feel guilty, because like any health issue, it's always good to begin treatment sooner than later. It will take time to reassure her but you can manage PD and live a good life while it progresses. We all progress differently but there are things you can do that are "neuroprotective, like exercise, diet, and I am a big believer in mental health and not letting stress get to you! Exercise is one of the best things you can do for PD!! Thank you so much for your kind words and subscribing and sharing your story with others!! We learn from each other 🥰
I've had incredible trouble with a bad chronic pain in my chest for just over a decade, over time it's gotten worse. And now I've got the beginning symptoms of YOPD. It's difficult to see the symptoms sometimes and it's hard to tell though the other problem. I've got an extremely good neurologist helping me. Thank you for explaining how it happened for you. After being ill for so long I often just overlook or ignore things because I'm worried about coming across as a hypochondriac and losing a good dr. After seeing how it happened for you I'm going to start to pay more attention, Thank you.
So sorry to hear about the chronic pain and new YOPD symptoms! It's super important that we communicate our issues with our doctor to try and catch what we can as soon as possible. Easier said than done but have a "extremely good neurologist" is a great start to finding out what is going on. Thank you for sharing your story!
Hi Jennifer, thanks for this channel! I thought the “light was at the end of the tunnel” when I got in front of a young-ish MDS back in April this year (…after 4.5 years of progressively worse symptoms & countless specialists, including a sleep-wake neurologist). After 2 months of tests & a follow-up yesterday that didn’t feel as nearly professional as my initial consultation, I’m realizing my journey continues. I’m upset & frustrated! I’d watched this particular WP video back in March & was glad to do so again. Thanks for reminding me it’s rarely simple, especially when we’re young women.
Goodness I wish it was simple!! As you are discovering, it's not. Saying hang in there is enough when I know how frustrating trying to find the answers can be, but patience and perseverance and finding the right neurologist/mds is what it will take. Best wishes to you on your journey!
Thank you very much for sharing this! Just subscribed to your channel. So, I got my diagnostics 9 days ago... it all started (and so far it is the only symptom) with an annoying tremor around my left hand thumb. As I'm left handed and also use the mouse left-handed, that was quite a bad inconvenience. My first neurologist was more convinced that it could be some kind of muscular imbalance, and so I sticked with physiotherapy and chiropractics, but did not obtain any improvement. He then referred me to a motor disorder specialized neurologist that in 10 minutes found so many triggers for the tremor and then asked me like "do you want to make an exam and know the answer or do you prefer to wait?" and then I knew it... after a DAT-SPECT scan, the confirmation came and so I'm mentally processing it since then. Thank you for sharing your experience!
Thank you so much for sharing your experience! It's tough to hear that it's impacting your left side, because you're left handed. I have to say that I think all the people I know with PD is the opposite, but now I am going to start asking and actually may do a video on the subject to see what kind of comments come in. It sounds to me like you got referred to a great MDS which is always great to hear! You have Parkinson's is something no one wants to be told....you look young as well...hang in there and find a YOPD support group if you are under 50, it's so important to know others with the disease! 🥰
like your RUclips video I was diagnosed at in 2004 at age 30. I would like to share more about my diagnoses but will have to write something in a little more detail soon, just wanted to say Hi.
Hello and thank you for sharing! In the beginning I kept a lot to myself...there were people I could talk to for sure, but as of late, now that I have been opening up about it, I find it quite helpful. So yes, you should absolutely write something :)
I am in the process of getting a diagnosis for left sided weakness and tremors. First neuro saying anxiety but similar to you I can’t wiggle my toes or curl left foot. Movement is limited. This video is helpful in understanding the process of getting a diagnosis and knowing some symptoms.
It's not an easy time when trying to figure out what the hell is going on with our body. Some women encounter the it's in your head doctors, so be patient if you do. Thank you for your comment and sharing your story with our Parkinson's community. Sending love your way on your journey to finding the answer!! ♥
Thank you for sharing your PD story. My journey with PD started about 2013 (today is 2024 and I am 77 years of age) when my sense of taste and smell was much reduced, perhaps 80%. I ignored it for a year, thinking it may be due to medications I was taking or that it would just be temporary. About a year later I decided to do a Google search for the cause. The internet response was it's usually due to some sinus issue - or it could be Parkinson's! Oh that's interesting. I looked for the top ten PD symptom list and determined I had several of those issues. Over the following years PD would add symptoms to the list. They all come and go, some lasting only hours, some weeks or months.
My older brother sent we siblings information that he had not only prostate cancer but also Parkinson's which was diagnosed at the Mayo Clinic. A couple of years later brother Jim died of cancer but was quite deep into his PD motor symptoms. The major difference between Jim and I is all of my symptoms are non-motor, even today months after a skin biopsy returned positive for PD I still do not have visible motor symptoms. But they are coming.
For the next years I researched PD, flip flopping the certainty that I had it or not. About 7 or 8 years into the process I finally decided to see a movement specialist who said, "You don't have Parkinson's but you have something". Then the pandemic hit and I cancelled all of my doctor appointments. three more years went by. I had the DatScan and then the skin biopsy (about Sept 2023). Both were positive for PD. I was elated. After about 10 years of tracking 25 symptoms I finally had an answer. It may sound silly that I was so pleased that I finally had an answer roughly 10 years into the disease.
I was a little angry because I had so many symptoms (which strengthened and weakened individually over time). But the common thinking was you must have this short list of motor symptoms to be declared diagnosed with the disease. Hogwash. Without the DatScan and skin biopsy I was pretty certain I had PD. They say by the time you are diagnosed you are about 50% into the disease. Well I expect things are changing. The medical community is slowly giving up on the "clinical diagnosis" because we now have a test.
So here I sit today. Void of any outward symptoms. No pain. No tremor. Not taking any meds. But I think I've had hand tremor for just a few seconds weeks apart. My real challenges are I have MCI, constipation, REM sleep disorder, slight balance issues, taste and smell issues, incontinence, fatigue, apathy (not normal for me), anxiety (also not normal for me), and a dozen more.
For the past year I've done an exercise program lasting 50 minutes per day. I go to the gym seven times each week when possible. Exercise has had a dramatic effect on me. I can do squats which I haven't been able to do for 40 years.
Thank you for sharing your story John!
watching ALL your videos
thank you dear lady
Thank you for the support!!
Hey Jenifer I’m 21 years old and from February 2023 I have tremors in my left arm when I’m relaxed and I’m moving little bit slower than usual I don’t know what to do?
Hello! Two things....make and an appt with your primary care doctor and don't worry yourself!! Stress and worry will not help. While it can happen it is very rare for someone so young to have PD. Talk with your doctor and see what they have to say 🥰
Hi. Diagnosed 23 Feb this year. I love your videos. I thought it was the end of my life that day of diagnose 😂 Greetings from Belgium
Hello &. Thank you so much!! I know the feeling but promise, as much as we don't want to hear those words, having Parkinson's is not the end. I thought so too, but was wrong. A big challenge yes, but not the end 🥰
How do you feel now? I am newly diagnosed and that is exactly how I feel.. like my world is ending. I am terrified. Does that feeling ever go away?
Jennifer, thanks for sharing your story. Talk about a run around.
Thank you Rick!
Great introduction, I'd never guess you have PD and you know how good PWP are at spotting other PWP!
Yes we are! I just met with a new client and my wiggles were crazy! He didn’t care 🤗 I should make a video with the symptoms I struggle most with next. Editing and timing when I record is key. I have good and bad days…today the dyskinesia is bad. Thank you so much for watching the video and commenting!! 💕
Here’s one of my other videos, can you see it? ruclips.net/video/LXNY_kx6azw/видео.html
@@ParkinsonsWigglesProject I most certainly can- thanks!
Fortunately in the UK we didn't have a lot of exposure to Mr. T!🤣
@@SF-cg6kn The man is terrifying!! Like Beetleguise I don't even want to say his name!! Indeed you're very fortunate :)
Have you tried PEMF therapy? I had a brain injury that gave me parkison's symptoms. Best thing that helped was PEMF therapy (with a very powerful PEMF machine). Made a huge difference.
I had to look up what a PEMF machine was...but it's really great to hear it "made a huge difference" for you! Thank you for your comment! ♥
@@ParkinsonsWigglesProject These machines are typically found in chiropracters offices, heals all types of injuries. In my case the PEMF coils were placed on back of head/neck--worked like a charm.
Great intro! I was diagnosed in 2013 at the age of 37. My story is very similar.
Thank you Jeremy! :)
@@ParkinsonsWigglesProject I love your honest yet positive outlook. I try to take the same approach with the videos that I do.
@@JeremyMcdonald Thank you and I will check your videos out! The mind body connection I believe is very strong, so finding the good is essential! 🤗
How old were you when you started noticing these symptoms? And did they ever do a DATScan when you were seeing all these neurologists? Thanks in advance. Going through something similar….
Hi Issac! I was 38 when the motor symptoms became clear. Once I saw a movement disorder specialist (MDS) at Stanford and she had confirmed what the first neurologist' diagnosis, and I had tried carbidopa/levodopa that the multiple sclerosis specialist had prescribed and it made all of my symptoms essentially disappear I knew and agreed that it was Parkinson's. The MDS offered the scan but I felt it wasn't necessary. Looking back I would have said yes. Hope that helps! 🥰
I'm 65 have been struggling with fatigue, joint pain and tremor. Sometimes shaking vigorously. My gynae referred me to our neurologist whom couldn't find anything. I had to see the neurosurgeon for my neck and lower back and when he did the nerve test saw my tremor and told me I have PD. He is not addressing the tremor but my neck and back. What now
Find/get a referral to see a Movement Disorder Specialist. They are neurologists who focus on Parkinson's disease. Depending on where you live they can be in short supply. I drive 1 hour and 45 minutes to see mine, but it's worth it. I know it's a challenging time, hang in there ♥
Your story is so similar to mine. 1st doctor (a general Neurologist) said PD without a doubt. 2nd opinion (MDS) said drug-induced. 3rd opinion (Top MDS at Rush Chicago) said probably MSA or Corticbasal Syndrome. Too many different opinions!!! Finally started on Sinemet and DaTScan. It was PD. It is amazing to me how different each doctor saw my symptoms. It took a full year of various doctors, tests, lots of $, and major anxiety to figure it out.
I’m from Chicago, sounds like you’re near the big city as well! I wish I knew going into it how challenging it can be to diagnose YOPD. It’s stressful, time consuming, and expensive. Thank you for sharing your experience!! 💕
Danna, if you are willing, could you describe how your symptoms started and progressed over time? I have no right arm swing, severe pain in my neck back with headaches, excessive sweating, scream in my sleep, cogwheel rigidity in my right wrist and arm, shuffle when I walk, stooped posture, slight tremor in my right thumb and first finger, nausea, very stiff and ridged, lots of pain in my feet like cramps as well as depression and anxiety. I take no mediations, so mine shouldn't be drug induced. Thanks so much.
My left foot does too… but I haven’t been diagnosed. I start to wonder, both my parents had it. So I’m curious what the symptoms are. If I fit, or is there a better way to figure it out.
I would recommend not self diagnosing as tempting as it is....Figuring it out is a journey. The first neurologist like I say in the video was right, he knew it was YOPD but it was my wanting a second opinion that drew it out. At the time that is what I needed to do to come to terms and agree...we don't have the benefit of hindsight when we are in the midst of our search for the answer. You will find yours! The Michael J Fox Foundation is a great resource to see what the symptoms are. Just know that each of us truly has our own experience with PD. For example my tremor is not present, maybe 1-2% of the time if that, but I have gait issues. Someone else could have the opposite, dominant tremor and no gait issues. This adds to the challenges of getting a diagnosis, and especially for YOPD. Thank you for sharing Thomas!!
Oops I was not finished but now don’t want to overwhelm my self or others😊
I'm in that position now! It's scary thing
It's really hard at first and scary, yes....but it can be managed and you still have time to live life! Take seriously recommendations for exercise to slow progression and I believe that finding your mental health ninja to fight back depression, worry, and fears. I went to a therapist to help me process my diagnosis and it was one of the best decisions I have ever made 🥰
i was recently diagnosed with Parkinson’s disease May 2021. About two years ago or so i noticed some changes, i just could not put my finger on it. Slightly hunched over and walking funny because my balance was off. My joints ached and snapped like twigs making loud echoing noises in the room , stiffness and pain. Last fall i noticed a slight tremor in my left hand. Symptoms progressed by March the tremor became worse that’s when i started doing research and discovered what was going on with me. In May i got my diagnosis. The medications are helping, i do feel better, but still have some joint pain and stiffness, tremor is a lot better. When having an “off” episode i feel like I’m in severe pain and frozen, my tremor becomes worse. Although people in my family noticed some things in my walking and speech, such as slurred and stuttering speech, i did not tell them about the tremor. Know body even suspected Parkinson’s disease, not even me. At first I thought I might have MS or MD, I even thought ALS. I’ve had three Doctors officially diagnose me with having Parkinson’s disease. I’ve been off work since May, I’m trying to get back to my job but my doctor has put return to work restrictions which my company can not accommodate. I’m working with the state Vocational Rehabilitation to see if i can safely return to work without restrictions. I will be filing for SSDI this month. I’ve never had this much depression and anxiety my entire life. God has a sense of humor.
I am very sorry to hear about your struggles but know that it can get better! When I was diagnosed I decided to find a therapist and specifically a cognitive behavioral therapist to help me work through what my diagnosis meant for my career, for finding love, and to help me process all of my fears. It was one of the best decisions I've ever made!! It's an investment, and you have to be patient and find the right therapist for you. I tried someone else while I was on her waiting list and it wasn't a good fit. The way that I see it, the diagnosis is a big deal and naturally one will feel anxious and depressed, but you absolutely can work through it and believe it or not, live happily with Parkinson's. It's not easy but something just clicked in me regarding my own depression...I was done being sad, and life is short, so I decided to do everything I can to keep things in perspective...take it day by day to not overwhelm myself...and make the most of every day. Also, stress as we know is a killer and finding a healthy state of mind will no doubt make you healthier overall. Hang in there, be kind and patient with yourself, and work thru the work stuff, you will get thru it!!
@@ParkinsonsWigglesProject very encouraging words, I’m greatly appreciative. I know I’ll be okay, I’m struggling but I’ll make it. It’s just sad to see a guy like me go from being happy, to the tears of a clown. God sure does have a sense of humor
@@WECOOK1969 The highs and lows of this wonder called life, take care!! : )
@@ParkinsonsWigglesProject Your video and this comment are very helpful to me. I actually took a screen shot of you and your comment and put it in my “notes” on my phone under the title, Stay Strong. I’m 46. I realized I have PD at 45 but symptoms started at 40 or earlier. My mantra is “Golden Years Now.” No more postponing adventures and joy; I’m squeezing as much in while I still can. Thank you for your new channel. You are relatable and inspiring.
@@Rosie_Apple_Delight Thank you for your kind comment and I am happy to hear that something I've said in someone's notes under "Stay Strong" : ) That's wonderful!! Indeed you must be strong and treasure and find joy everyday, it's there for all of us, even those of us who have Parkinson's. Please stay in touch to share you journey and wisdom that you learn along your way!
May I ask what medical insurance you had and how much out of pocket expenses you paid for all your doctors visits?
I had Covered California, which came about after the Affordable Care Act was passed. Being self employed this was a great option!!! So thankful for it!!! At the time I believe visits to my primary care doctor were $25 for the copay and specialists ranged from $40-$75 depending. I would say over that 7 month period 12/13 diagnosis - 6/14 finally confirmation, between $450-$600 in copays. Somewhere in that range, it's been a while but I think this is a good estimate.
@@ParkinsonsWigglesProject Thank you for sharing your information
I have tremors in my left hand and I drag my left foot when I get tired and now my left eye twitches. My husband says my mood is more unpredictable and I seem to be bothered by loud noises and chaos more. But right now I feel like it's kind of just my imagination, even though it's not. I'm 39. I don't know if I want to go to the trouble of worrying about it. The only symptom that I don't like is the lack of motivation, energy and muscle stiffness and pain in the morning.
Have you been diagnosed with PD or just have the symptoms you mentioned?
Hi jen good stuff 👍🏼👍🏼👍🏼
Thank you!! 💕🥰💕
Thank you for your video. I am trying to get a diagnosis and really struggling with getting answers. I have been detreating since August 2019 and have seen over 15 different doctors with several different diagnosis. I started having severe headaches in 2019 that were unlike my regular migraines. As well as severe fatigue, vision issues, rigidity, stiff muscles and the worst neck, head and shoulder pain. I started sweating from my hands and feet like crazy and can't control my temperature. My right arm no longer swings when I walk and my right leg doesn't move much when I walk. I scream in my sleep and roll all night long. I have constant stomach pain and nausea. My movements have become very slow and small. I haven't noticed my hand writing changing that much or my smell going away. I am almost completely homebound and might have to quit work as a director at a college.
I recently ended up at UT southwestern in Dallas and saw a neuro-ophthalmologist. She thinks I may have a leak in my spinal cord that might cause all of these symptoms. However, she also thinks it could be PD or a form of parkinsonism as I also have autonomic disfunction. i.e. can't control my sweating or my BP. They did a blood patch in my spine to see if it helped the symptoms with no change. I am curious if you have and headaches, sweating, or other symptoms as I do?
Sorry to hear about your troubles getting a diagnosis Kevin! Have you discussed with your doctors seeing a movement disorder specialist? I highly recommend seeing one as they specialize in Parkinson's....I saw two MDS and one said it was a stress induced tremor and the other confirmed the very first diagnosis I got from a neurologist which was PD. During my diagnosis my left arm stopped swinging unless I focused on swinging it, I had the foot dragging, an intention tremor, and a change in my writing . I acted out some of my dreams, like kicking my husband but it was so infrequent that I didn't associate it with PD. I didn't have any headaches but that doesn't mean anything because each of us has our own PD story and symptoms. It sounds like you've been very patient and I recommend keep being patient and determined and get a referral to a movement disorder specialist! Let me know how it all goes and hang in there : ) and thank you for sharing your story with us in the Parkinson's community with your comment!!
The Neurologist mentioned me seeing a MdS at some point but they are so focused on trying to help the headaches as they are liyterly around the clock. I also have cogwheel in my right arm. I have all the symptoms of a spinal leak and the signs of PD. I am so ill, I just can't wait for months or years to try and figure this out. Thank you for your response.
@@kevinsomers8923 I would ask see a MDS, now in my experience it ended up kind of throwing me for a loop but it worked out in the end. Every situation is so different and personal. We want to make the right decisions regarding our health, and remember that you can and should advocate for yourself if you think seeing an MDS is the best decision for you. You can be respectful of your current doctors and advocate for yourself. Hope that makes sense and that you find relief soon!!!!
I agree with you and I am going to ask for a MDS as well as the other testing they are planning. I just feel like I am running out of time. I so appreciate your advice and support. ❤️
@Kevin Somers. I am 32 and have all the same symptoms, Kevin but I also have brain fog, swallowing problems, and other small issues as well. My tremor is slight and seems to be worse in the morning and speech problems. I get very weak and tired in the heat (don't know if pd does that) but I've been searching for a diagnosis for a year and a half now. I have a cervical MRI coming up but so far my head MRI and other tests have all been negative. I'm sorry to hear you're struggling. I would say the hardest part is being young and doctors not understanding or believing me even when they see it with their own eyes. They keep running tests when I ask for them but they're at a point now where they just say idk what it is, must be psychological. I hope you get a diagnosis soon. I keep saying the same thing, that I can't go another year or more begging doctors to listen and help me. It is rough. It's lonely especially when people don't understand that just walking or talking with them is draining and not even having an explanation for them. Best of luck to you. When you get a diagnosis would you update us?
I think neurologists are vastly under utilizing the DaTscan. A DaTscan doesn't confirm Parkinsons, but it confirms that you have a dopamine deficiency in the brain. There are about 5 diseases related to dopamine deficiencies in the brain, with Parkinsons being the most common. My first neurologist ran all the tests you had done (wiggle your tows, let me see you walk, tap your fingers) and then guessed I had PLS, a precursor to ALS. She never told me about the DaTscan, which would have ruled out PLS/ALS. I was freaked out by the PLS diagnosis as the outcome is much worse than Parkinsons. My second opinion neurologist immediately said "get a DaTscan". The DaTscan confirmed my dopamine deficiency and ruled out other possible diseases such as MS or PLS. He then pretty confidently said I had Parkinsons. The DaTscan is expensive, as it cost me about $4500 (almost all of my insurance deductible for the year), but well worth it.
Wow, I would have been freaked out too!! I wish I had taken up my doctors offer because in the beginning they (scans) can be justified, they are soooooo expensive! Thank you 🤗
Hi there. I haven't seen a GP in years so I'm currently yet to be diagnosed but i'm pretty sure this is what has been wrong with me over the past few years. I have ways of copping with the symptoms but I have all the symptoms. I don't like medicine or doctors so i'm going to just try to keep going but its past two am and i'll be up till at least seven, I wish there was somebody awake to talk to. hmm. anyway thanks for your story its very interesting it has certainly made me think. not very clearly but that's nothing new. ha ha anyway thanks for your post.
Thank you for your comment! I have had bad experiences with doctors but know that there are great doctors out there, who yes may be a challenge to find but they are out there. Also if you have Parkinson's from my experience you are going to need a great doctor!!! Have you heard of Parkinsonism? Until you are diagnosed you may be "pretty sure" that you have PD but until it's official you won't know for certain. I wish you the best on your journey to getting the right diagnosis! And keep us posted!!🥰
@@ParkinsonsWigglesProject Thank you.
For the best part of 16years iv been thinking my spine has been the cause of all my symptoms eg very unstable blood pressure mussel pain and weekness cramping hands and legs and did not think much about the right hand tremmer over the years iv seen so many doctors found I had spinal stenosis in my neck and have been told can't be causing the mussel loss and tremmer as on wrong side getting a dat scan I'll see what happens ow and the neurologist sent me a 2 page letter still trying to understand some of the medical terminology
Hi Kevin! The medical terminology is totally overwhelming at first, hopefully your neurologist will go over what all of it means and a dat scan will help as well. I try for every appointment with my neurologist to have questions written out and to be as organized as I can. Otherwise I forget to ask important questions.
@@ParkinsonsWigglesProject hi thanks for responding my memory is let's say bonkers I forget wher I put stuff all the time and not remembering name's of new people IV started lists for shopping lol or I always come back with out something
Great things Dr Madida on RUclips has being doing for mankind, I undergo his Parkinson disease treatment plan for weeks and my Parkinson Disease was completely reversed.🎉
Hello, i am 24 years old and notice my first symptons at 2020, i have tremors in my left hand and legs, i did the dat scan with normal results, but i think that i have young parkinson disease, my tremors its getting worse day by day. Sorry for my english its not my native language.
Im also have foot pain and sleeping problems, i woke up every time and i cant mantaining my sleep, i have face tremor, in my libs and eyes…
According to the Parkinson's Foundation if your DAT scan is normal it means you don't have Parkinson's. I am not a doctor!! But I wouldn't worry about YOPD. There are many other reasons for tremors. If you can find a Movement Disorder Specialist to see, they specialize in Parkinson's, this is an option to explore as you try to figure out what is the reason for your tremors. I know it's not an easy time so I wish you the best on your journey trying to find the answer 💕www.parkinson.org/understanding-parkinsons/getting-diagnosed#:~:text=A%20DaTscan%20involves%20injection%20of,person%20does%20not%20have%20Parkinson's.
@@ParkinsonsWigglesProject thanks for you support 🙏❤️
Some patients are often misdiagnosed and given an MS diagnosed its stead of pd. Illusions aren't always present in the brain scan for an MS diagnosis
If you watched my diagnosis video I put myself through some extra trouble by wanting a second opinion, but I wanted to be certain. The first neurologist told me right away, and was confident. Once MS was ruled out for me by a MS specialist a Stanford, I knew. And with the Levodopa test and how quickly I responded I really knew it was PD. I have heard from many women that doctors have said their symptoms are in their heads. I think young women especially can find getting a diagnosis more challenging. But not always!!
Iam 42 diagnosed with Parkinson two years ago
Hello! How are you doing?
@@ParkinsonsWigglesProject some days good other bad days my rigidity and muscles pain is my biggest problem
@@mobi4138 Walking is mine when I am off. I bought a small hot tub years ago that I can't live without!! Have only a standing shower but there's nothing like a hot soak for the muscles!!
@@ParkinsonsWigglesProject I appreciate your advice thank you very much I will do it
You didn’t have bradykinesia at that time? Edit: Nevermind, small handwriting & no left arm swing are symptoms.
:) Yeppers! I described it as weakness on the left side of my body as well.
@@ParkinsonsWigglesProject Do you have reduced blinking? Just watched a video by Dr. Steve McGee where he says he diagnose bradykinesia by counting eye blinking. 🤔
@@bash547 hmmm, my eyes blink normally, I think 🙃 but since everything slows down I could see that helping with diagnosis but usually there would be other symptoms as well I would think, like reduced arm swing, but I’m not a doctor so!?
Blood type diet🎉
I wonder in the doctor’s community, do they provide feedback when a doctor provides the wrong diagnosis? I know nobody is perfect, but the second doctor could had wasted a lot of your time and money if the specialist didn’t question why you needed his or her treatment when the first doctor and the specialist felt you had Parkinson’s.
You would think they would provide feedback, but my guess is no. It's unfortunate but I do understand that diagnosing can be tricky...but it was clear. Thank you for your comment ❤️
Hi Jennifer, thanks for this channel! I thought the “light was at the end of the tunnel” when I got in front of a young-ish MDS back in April this year (…after 4.5 years of progressively worse symptoms & countless specialists, including a sleep-wake neurologist). After 2 months of tests & a follow-up yesterday that didn’t feel as nearly professional as my initial consultation, I’m realizing my journey continues. I’m upset & frustrated! I’d watched this particular WP video back in March & was glad to do so again. Thanks for reminding me it’s rarely simple, especially when we’re young women.
Hello! I wish I could say the journey is easy but it’s not. Finding a cognitive behavioral therapist for me was a game changer. I connected with her, and she spoke a language that helped guide me to find acceptance…and as the years have gone by I understand my body more clearly than I did in the beginning. I hope that you find your good place of being with Parkinson’s and finding the right doctors, and building your support system takes time, you will get there 🦋💜
@@ParkinsonsWigglesProject Thanks for the quick reply! I do have a new therapist who’s worked with HD patients. She is wonderful! My own Mind Ninja 🧠🥷☺️