MS-Like Symptoms & My New Cane
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- Опубликовано: 15 апр 2019
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I'm a SAHM of 4 boys, living with a chronic illness. I also have a special needs child who suffers with ADHD, anxiety and High Functioning Autism.
My name is Meredith (aka Meri) and I'm a stay at home mom of 4 boys (including twins). I also suffer from an autoimmune disease called Sjogren's Syndrome, which makes each day a little more challenging. I am also the mom of an ADHD ODD, Asperger's child.
Like most of you out there, I'm just a regular (crazy) chic trying to survive as a mom. I'm far from perfect, but I do my best to get through each day while keeping everyone alive. I also share what works for me for managing the day to day madness of being a family of 6.
Please feel free to leave me feedback. I love to hear from everyone!
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Hey girl, I know you’ve been going through a lot...but let me just tell you that your hair looks fantastic
Thank you so much!!! You're the best :-)
PLEASE KEEP MAKING THESE VIDEO'S! YOU'VE HELPED ME AND YOU ARE BRING AWARENESS TO SS!!!!! THANK YOU, FEEL BETTER SOON!
Thank you so much! Encouragement is always good :-)
My Doctor said that I was a medical mystery too. Ugh! I was also told that I was the healthiest, sickest person they have ever seen. I love your cane. I have a purple one with gel grip handle.
I'm also a sufferer of chronic pain, specifically nerve. You should watch the documentary Under Our Skin. You probably have Lyme disease but tests always come back negative so you could have it but never know. you should watch the documentary it explains everything and also why the doctors treat people like us so badly. It's happening to all of us.
I've got lupus. Sjogrens hasn't been diagnosed, but I have that too. I also have trembling, it started in my hands and is now in my arms too. I get nerve pain in areas of skin, mostly my arms and legs, where the surface area hurts a lot if lightly touched. This usually also goes deeper into the muscle and hurts. These patches last for two days before going away, and it usually pops up again. When I have a really bad flare, I get more of these at the same time.
I'm a 30yr old mother of 5, and I just want to say thank you so much!!!! I'm going through the EXACT same things. I've been going to the doctor for years, but they're very dismissive. So ive found things to help myself. Try black seed oil, Irish sea moss & tumeric supplements. Also drink as much coconut milk/water as you can. I always feel at my best when I'm on a vegan cleanse. I hope this helps💜
Wow. This sounds just like me. I have Sjogrens and get tremors and internal tremors all the time. So glad I found u. I thought I was crazy.
MY MOM USE TO THINK SHE HAD MS AND TO BE HONEST I AM STARTING TO THINK IT WAS, AND WITH ME. I USE A ROLLING WALKER WITH A SEAT.
I have definitely learned a lot from your experiences. I too am very fatigued and my muscles feel like I have run a marathon with walking 30 minutes a day. I’m finally going to the MD next week and I fully expect to not be taken seriously like yourself. Your videos let us know we are not alone. Please keep us posted on how you are doing and hope you start to feel better or at least get some kind of concrete information on your symptoms
Thank you so much. Its nice to know I am helping somehow. Stay strong.
Your videos are an incredible resource - thank you! I have an assessment with the rheumatologist next week as I've dry eyes and mouth, various neuro issues and now a really tight chest, so it'll be interesting to see what they think. Ps. your hair is amazing - both longer and short!
I am so sorry that you are going through all this. I feel the same way. You are not alone.
*hugs*
I wished you lived closer to Baltimore so you could visit the sjogrens clinic. Maybe you could check it out. They have a RUclips channel. John's Hopkins sjogrens clinic, dr julius Birnbaum and dr Thomas grader-beck. Its amazing and they have the latest research on it too. Depending on your treatment it's like a spa sometimes
Did you get the muscle test with the needles to test nerve damage and muscle damage? Also, sjogrens is treated differently in Europe than in the United states. Do you get ocular migraine? As well
I’ve had sjogrens & ME for several years. I’m having lots of MS-like issues and get the results of my MRI. Prayers for you and your family!
Thank you. My MRI was negative for MS, but i did learn that Sjogrens can often mimic MS, including developing lesions.
My doctors always say ‘Stay off the internet!’ I’m sure it’s just because we can find out more and diagnose ourselves while they don’t have a clue, and that’s because we actually care about what’s wrong with us
I've heard that too. The fact is Doctors failed me for over 15 years so I have no choice but to be on top of my own health. Even getting the initial diagnosis was because I initiated the testing based on my symptoms. You are right, doctors have too much pride. If they had to live with out symptoms, they would care more too.
Oh I know what you mean. I do my own research regardless of what they say. I have diagnosed a couple of things with myself and I was correct! We are the only ones that truly care about what is going on with ourselves
@@SurvivingasMom do you know your diagnosis or suspect it?
Yay!!! I was able to see video on day you uploaded...notifications are working! I was inspired by you & bought a walking stick that I named Bridget because I’m having balance issues as well. I have three girls and they all call the stick bridget...it makes it a little less heavy if it has a name.☺️ Hope your visit with dr goes well! Lots of love ❤️💕❤️
That's great! I should name mine too. :-P Thanks for the tip :-)
I love watching your videos I'm in the process of testing for sjogrens and I can relate to you so much
First of all I would like to say, "YAY"! that I can comment now! when I started watching you about 3 months ago, I couldn't comment but wanted so desperately to tell you that our stories seem to be similar and that you should check into the IgG, IgA and IgE standard food panel done through US Biotek, if you haven't already. And once you have the results, avoid those foods that it shows to cause a reaction in you and you should start to, theoretically, feel better as I did. (I am not a doctor, just sharing my experience). I have had Hashimoto's for 6 years now and have been symptom free by eating this way but still having to take levothyroxine. Last year I forgot that I Couldn't eat broccoli and started eating broccoli again and now have caused myself to have Schmidt's Syndrome or poly-glandular autoimmune type II with Hashimoto's, vitaligo, Addison's, autoimmune POF, Raynauds phenomenon. I have been diagnosed with those. I however feel 99% certain that I have Sjogren's S., And possibly M.S. or lupus. Just like with the ones before that no doctor would listen to me except Holistic M.D.'s. and that is spendy! They usually don't take my insurance. It is sooooo frustrating to try and get REAL MEDICAL HELP!!
I have been battling these new autoimmune diseases for over a year now and still I am not to the bottom of it. I just feel so daunted, trying to figure all of this out basically alone, and while feeling like going through a world war 3, zombie nightmare in my body and feel like I might pass out and die at any moment. Crazy to the bystander, maybe, but I bet you understand that statement more than anyone would want to. And the headgames!! Don't get me started there....
The video before this one is so me with the m.s. like symptoms and/or the polyneuropathy. Exactly.
My hope is that we both get to the bottom of these afflictions, and soon! Do you have any tips on getting a S.S. diagnoses?
May love be at your side, all the days of your life.
Sincerely, Angie D.
P.s. When Addison's is affecting me I feel like I might pass out so I have to fall to the floor to keep from passing out...... maybe you have adrenal insufficiency as well?
It shouldn't be this hard to figure out, to be able to live a productive, gainful life......... At least we can choose love
My feet went from feeling like something was stuck to the bottom of them, to burning and searing one year later. changes from week to week...yes, nervous system is very screwed up....got the ischemic, white matter on the brain as well. shortness of breath when in a flare, ...OMG!!!! SWEATING AND FREEZING! I wish we could talk over a cup of tea! YES YES TREMORS!!!! As I watch, you are describing my symptoms!....I'll stop writing now! So much the same. YOU are the only person I've heard of with these same symptoms...YES! I'm "a mystery " too, MAYO CLINIC said "sometimes we just don't know what wrong" after a long expensive trip...
Vlrissolo sounds like u have neuropathy and dysautonomia. Must see autonomic neurologist
@@monkeybearmaxthanks, I've been though. just saw a rheumatologist again after about 15 years yesterday ! the docs have been passing me around but not working together. Was diagnosed w SS years ago but they simply spoke of dry eyes and mouth, which I didn't even mention since it had gotten much better 5 years earlier .I was put me on a med whos 1st side effect was body aches, the reason I was there plus fatigue. they said stop taking it and that was the end of it. Just in the last 6 months, and with your video's I realized how complexed SS is. 9 vials of blood and a urine sample were taken yesterday. wish me luck. many of these test have already been done and were positive, yet no diagnosis, so no treatment. Hashimotos and hypothyroid have been complicating matters but that good now. wish they'd listen to me, the patient more!!!! only from my headache neurologist...thank you!
Vlrissolo you have seen an autonomic neurologist with an autonomic lab? There are only about 8 in the country with proper testing equipment.
@@monkeybearmaxI'm still waiting on the SS blood tests to come back! These docs have been passing me around and the thyroid situation has complicated any diagnosis. I WAS diagnosed with SS 15 or more years ago but I cannot recall what tests were done then. I was diagnosed in an office visit, that, I remember. I had never heard of SS and it was explained as causing dry eyes and mouth, but I went there for weakness, body aches and fatigue. I was put on some med that causes body aches! lol, I called back and was told to stop taking it, and nothing more was done. since then I've been getting and worse. I agree there is an autonomic issue going on, but these symptoms are new by comparison. my hair started falling out (at least 1/2 gone) foot problems in the last 3 years. the sweats have been going on for close to 20. I live in " The City of Medicine"!!!! just a run around nightmare! Just got my CBC back, but not the connective tissue tests. CBC seems ok but for a few minor things. Rheumatology has not yet remarked on those issues....sorry, this has been a very long drawn out nightmare!!! Thanks
Vlrissolo if u have autonomic issues ur insurance will most likely approve ivig but autonomic neuros seems to be the only ones that prescribe it can reverse some of the nerve damage and also helps other ss symptoms.
Walking sticks work better than canes for me. They're more secure.
Also you will get pains your body is getting used to using a cane when walking. Make sure you are using the cane properly
I think I'm using it properly. Thank you :-)
Have you had a genetic test done by any chance? I was diagnosed with MS when i was younger but my doctors noticed that i had physical features of marfans. I had a genetic test done and it turns out that fbn1 gene has a mutation (a substitution mutation) that (so far) has not been studied in that exact gene location. All they could tell me is that there's evidence that the mutation causes the body chemistry to have negative effects and may or may not cause the MS lesions. I am a medical mystery too but it's understandable when you realize how many people don't have access to doctors. Keep the research up and keep fighting!
I don’t understand why RUclips does that. You look great! My daughter was just diagnosed with primary sjogrens and POTS with a small amount of neuropathy. She’s 34. I hope her symptoms don’t worsen, but that’s what makes these illnesses so insidious. You just never know. You may want to try support stockings and even something that goes way up around the waist. I heard that helps with neuropathy symptoms that sounds like what you may be having.
I'm sorry to hear of your daughter's problems. Please encourage her to join support groups, as they have been SOO helpful to us all. Hopefully her illness doesn't progress too much. Thank you for the suggestion and for watching. :-)
I was told I have Sjogrens by my ENT. But it hasn't shown up in my blood at at bone doctor. It is frustrating they think I'm crazy, what do you think?
Cindy Giboney lip biopsy is gold standard
about 40% of blood test have false negatives. Look into the lip biopsy or ask your doctor about the Sjogren's blood test done by IMMCO Labs. Thats how I finally got my positive diagnosis.
Cindy, surviving as mom is 100% correct. That’s how I found out I had it also. It doesn’t show in normal routine blood work. You have to have a specific test done for autoimmune disease (ANA) if you haven’t done so already. I also agree with the lip biopsy. Good luck!
Any help on hair loss with sjogren. Doctors tell me sjogren doesn’t cause hair loss. I am Not convinced. Soooo frustated. I have lost at 50% hair density over the past 4 years . Not getting bald spots. 😞
Wow those stabbing pains are something else, they just come out of nowhere!!! And oh my gosh I just started getting these tremors too about a month ago but it only seems to happen at night when I'm falling asleep or I wake up in the middle of the night feeling it in my chest. I get leg weaknesses, numbness, burning, pins and needles all of it. I know just how you feel about the cane. I keep struggling without it limping around in agony because on top of having sjogrens I also have advanced degenerative joint disease otherwise know as Osteoarthritis in multiple joints but worst in both knees and will be having knee replacement surgery soon. I finally decided to use the cane and stop making things harder on myself just because I was afraid to look old or pathetic...fact is I limp around so bad I don't know what I was trying to hide.
So sorry to hear it. Stay strong :-)
Great video Meri! So frustraring how many symptoms we can have and Drs are basically useless, yet it's so easy to research. I don't think they are in denial, I think its their pride. Anyway, I experience so much of what u described and you are right, the facebook group overwhelmingly does too. I think you're brave to use the cane, Im not so brave. They'll be scraping me off the floor of Costco one of these days, then maybe I'll learn my leasson!
I felt exactly the same, as far as pride. I initially refused to get a cane, also saying I needed to be falling all over the place first. Then, I realized that I was avoiding doing things due to my fear of falling and feeling unstable. Now I'm happy I got it. The first week was weird. Still weird sometimes, but I'm getting used to it and prefer to always have it just in case. That's why I got a fancy cane, to help minimize the insecurity of needing a cane. Our own pride will always be an obstacle with this disease.
I get the same leg pain. It was one of my first symptoms. Gabapentin helped some but not all/always.
Good to know. Hopefully my doctor can give me something to help. The pain and itching are just unbearable at times.
With me it sometimes feels like someone is gripping the muscle. Not like a spasm. Its Its something different
@@SurvivingasMom have you been tested for Myasthenia Gravis too? If you've taken Flagyl or Fluoroquinolones (Cipro, Levaquin, etc), adverse reactions also mimic MS, MG, Sjogrens, ALS, etc. Doctors can never figure that out either.
Why did he even say it's only ok if you need it :/ did he doubt it? I'm struggling with the same. I ordered mine today and have had all the same thoughts as you
hi ethan
thanks for videos i just got diagnosed with sjogern's
So sorry to hear it. Stay strong.
Do you also have RA? It usually goes with Sjogrens for some reason. It would explain some issues. Funny…my brain MRI showed those lesions too but it’s not MS!! I have SS and RA and either explains all the pain and symptoms but I don’t know which is which. Are you going to do more videos? :)
Please talk about Rituxan infusion, it helps you or not ??? and the side effects of it
Not much to say. I get infusions every 5 months. 2 doses 2 weeks apart. After about a month, I start to feel better. When it works fully I feel totally normal and healthy. I have energy and feel like I can do anything. 4-5 months later, I start to slow down and have more bad days. That's when it's time for more.
Lots of possible side effects and serious complication risks, but minimal issues for me so far.
You’re telling my story! I had to start using the cane a few months ago due to the exact same muscle weakness and weird pain. I also have muscle twitching in legs, and hands and arms. They “ suspect” SS. 🙄🤦♀️
Sounds like possible SS. Also sounds like MS, which SS can mimic. I've been tested for MS but was negative. I still wonder though...
I truly hope and pray that you get some answers soon! Please be sure to let us know. I have been diagnosed with Sjogren"s, Lupus, and Rheumatoid Arthritis...but I am having a lot of the same leg problems as you. My rheumatologist is sweet, but she doesn't seem to take me seriously sometimes. My hair loss has been so much lately that I am going to have to buy a wig. The dermatologist gave me some drops to put on my scalp and some pills to take at night but they may take up to 6 months to work....if they work at all. And one of the main problems I see is that I cannot take some of the meds the docs want to subscribe because I am afraid they will hurt me more than help me in the long run.
Doctors LOVE to prescribe meds. If I took every medication that I was prescribed, I'd be a mess. Although I don't always take my meds as I should so I'm a bad example. Get a gorgeous wig if you need it and try to make the best of it. I'm sorry you are going through this. Stay strong.
I also need to hold on on things for grounding. I totaly understand the muscle fatigue... I have that a lot. It is so hard to explain something you feel inside... "You're a mystery me dear." I would've flip out of my mind if someone would have told me that. Nice cane!!! I've heard there is a way to allowed comments in a bulk for all your vids.
Thank you! I have to look into the comments thing some more :-)
Do you take Plaquenil? Are the infusions a biologic?
you've got incredibly nice teeth. I follow you're videos and have SS as well
My balance is gone, I walk like a drunk...and I don't even drink.
Okay I mentioned this before but if you have neurological symptoms like this or neuropathy or dysautonomia and u have sjogrens consider ivig. I have just been seen by autonomic neurologist and bc of neuro involvement I qualify for ivig which for some is more effective and less toxic than the chemo and can reverse the neuro issues. l also started low dose naltrexone and it is helping decrease fatigue and pain. Too soon for total assessment. Sounds like u have small fiber neuropathy - u need skin biopsy to confirm and qsart sweat test. U need to go to an autonomic
lab not a regular neuro. Good luck getting a rheumatologist that knows about any of this stuff. Ur symptoms are normal for sjogrens
I've asked my rheumy about IVIG in the past and she said its not more me. Same with naltrexone. Although, that was before my neurologic symptoms started. She may feel differently now. I'll mention it next time I see her. I am actually working on setting up a skin biopsy. Thanks of the info :-)
You look very pretty! I'm glad you're not wearing the nose ring. I just really don't like them on anyone. That said, I think you look great! You're a great mom despite your pain.
You look very pretty today! I need your attitude! 💜🦋👍🙏🙏🙏
I m so glad I have found you! I m in terrible shape! Prayers for you
try LDN, it works wonders!
I've asked many of my doctors. None will prescribe it.
Do another brain and also have a spine MRI. Make them do a lumbar puncture too.
Oh finally i can make a comment. Im going to go to Cancun Mexico to get umbilical cord stem cells for autoimmune and fibromyalgia at i think world stem cell center. They are going to do 350 mesicimal stem cell. They are going to inject it into my spinal fluid so it can get into the brain for inflammation. And they said it will help with the nervous system. Then they are going to do the rest as an iv. It might take more than one time. But i have to do something. I have no one else to take care of me if it gets worse. You can get them injected in you back to help repair the discs
You look nice with the exception of that nose ring. It doesn't do anything to help you! I don't like them on anyone! Hope you're feeling better soon. What are you doing to stop your hair from falling out?
Mark Culley rude.
@@holdendmb just giving my opinion on nose rings! I think they look disgusting on everyone!! No disrespect to her.
um...ok...? Not doing anything about my hair. Just waiting for it to stop falling out. Its usually only temporary.