Multiple Sclerosis - The Diagnosis!
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- Опубликовано: 6 сен 2024
- Multiple Sclerosis (MS) - The Diagnosis!
(VIDEO 5)
In this video I talk about my long awaited diagnosis! Investigations into my symptoms started roughly around Feb 2012, but the hospital didn't reach a diagnosis until some 15 months later in May 2013. It was however prolonged, because of my disc decompression surgery, MS does take a long time to diagnose.
I also talk a little bit about Steroid treatment which ultimately helped considerably with a lot of my symptoms.
Early Symptoms started 2007:
1. Numbness.
2. Burning.
3. Tingling, humming, buzzing.
4. Skin sensitivity or Altered Sensation.
5. Squeezing sensation especially in the Legs.
All of the above across my Feet, Legs, Hands, Tummy and Back.
New Symptoms starting Feb 2012 (Major attack)
1. Weakness.
2. Spasticity.
3. Abnormal Gait (walking as if drunk).
4. Extreme lower back weakness.
5. Severe Chest Pain.
6. Anxiety.
7. Tremors
If you've enjoyed this video and you feel that if may help another person in some way, please consider SHARING it on your social media - Thank you.
Don't forget to check out the other videos in my MS Vlog Playlist.
• (MS) My Life with Mult...
I don't know how prevalent this is but when I was diagnosed in 2001 and had to have the steroid infusions, my Primary doctor warned me that I would be prone to broken bones and broken teeth. For the last couple of years now my teeth have been breaking off .Now I'm in the process of having the parts left extracted and a partial made . Take extra care of your teeth and be careful not to fall.
Hi Doris, thanks for this. As well as the Steroids, I’m also on different ‘protector’ meds because of the steroids side effects, specifically brittle bones. I take Alendronic Acid which strengthens your bones and teeth. Thank you yes, I take very good care of my teeth, and I’m also very aware of my risk of falls. The last thing I need at the moment is a hospital stay with a broken bone. I really appreciate your message and concern. I hope all is as well as can be with you Doris. Very best to you.
Hello Neil: Wow! It's amazing that you diagnosed yourself like I did via research of symptoms on the Internet.
Yes! When I initially went to see my GP back in 2007, I remember him saying something to the effect of "That's a pretty good bunch of trapped nerves you've got" I always thought it was something more, so I did my own research and it wasn't long before alarm bells started ringing.
Thank you for sharing. I am starting at the beginning to hear your story. I thought for years I was dealing with MS but my MRIs are all clear. Hubby laughs they are not seeing any brain matter either. Lol. But the Hemiplegic Migraine diagnoses is similar but not the same damage wise. Keep learning, keep laughing and never give up.
You have a good speaking voice Neil, which makes what you say interesting. People want to listen to those who speak well, and who are genuine in what they are saying.
Thank you Dean 👍
Neil, I commented last week on your video about not wanting a spinal tap and now I'm finally watching the early videos you made! So interesting comparing stories with other MSers. You were diagnosed on my birthday, 2013 and I was DX nearly 18 months later on October 14, 2014. I've been told that I have no visible scars on my spine, but the lesions in my brain are too numerous to count.
That said, during a relapse in spring 2015 (6 months after DX and on my 1st DMD) my right leg would give out on me with no warning whatsoever! Just as you described--as though someone hit me in the back of the knee with a bat or club. So that was the 1st & only time thus far to have the 3 day high dose steroid IV you also had described in this video. That made wide awake the following 3-4 nights, but after that I felt like a million bucks (amazingly well!) for about 2-1/2 months. :( Them I slid back down to my "new normal."
I'm always very, very tired/fatigued, trouble word finding, cognitive issues & though I'm still able to walk unassisted, I'm a lot slower. Another interesting comparison--Copaxone was my first DMT (didn't work) and Rebif is my 2nd and I've had no new symptoms or disease activity on MRI for nearly 3 years! Old symptoms stay, but I'll take it. Be well & God bless, Neil!
Thank you Jennifer. I was also on Copaxone and felt it did nothing apart from hurt like hell when I inject. I did a video on this “I stopped taking Copaxone”. The very first time I had steroids was when I was diagnosed (on your birthday in 2013😊) It took about ten days but I remember CLEARLY how I started to get my balance back. It was an absolutely phenomenal feeling, I remember so well. The effects lasted a couple of years if I recall. Thank you for sharing your experience Jennifer, very interesting indeed. It’s really good to compare our different experience.
I really like your point about the neuro docs needing you to detail dates and symptoms of your relapses. I started a pain diary 2 years ago and have somewhat of a timeline for the docs. After watching your videos I am going to make it even easier for them to follow.
This is so helpful because of the time and distance space factor for a diagnosis of MS.
Could you create a video for the undiagnosed or newly diagnosed with tips to help them toward reaching a diagnosis? In hindsight you may think of something to help us present our history to the specialists in the best way possible. Thank you
for vlogging!
Thank Vicki, yep I remember the 'grilling' my neurologist gave me at the time with regards to timeline. Now, it's interesting you mention the "distance space factor" because that is something they kept on repeating over and over during the course of my hospital visits, but to be honest I didn't quite understand it. In fact, I'm still not quite sure but have a rough idea that it means a relapse is considered to be new symptoms with a certain amount of time between the previous symptoms, or something to that effect. Perhaps you could clarify.
As for the video, great idea and I've added to my list of video ideas.. I'll see what I can do :) Thanks.
I've watched all your videos up to this one. I'm still going through the stages to find if I've got MS. Last time I went for an MRI the 2 large lesions I have on the brain hadn't changed from earlier scans. Things have changed in daily life but I've got to be careful not to relate every scenario to MS. My legs buckled a while ago. They felt like they'd expanded and I couldn't lift my feet off the ground. This made me really think "Is this it? is this what it feels like?" I've been to see The neurologist at the QMC in Nottingham. He's now made an appointment for a full spine and head MRI. All sorts of things have happened over the past 4 years. Some lasting just a few hours and many lasting for days or weeks. Either way I'm having to prepare myself for what could be bad news. At the moment I don't know if I've got it.....I don't want it or want to tell myself I've got it but the gut feeling is somethings wrong.
(only part of this reply may display on a phone or tablet, I've noticed this happens with lengthy responses. A PC or Laptop should be ok)
Hello Karl, thanks for your interest in my videos I very much appreciate that and hopefully you're able to relate to them and find them useful.
I couldn't agree more, its so very easy to put every small ailment down to MS and this is something I often say to people when they say to me "It could be your MS". I mean yes IT COULD BE, but it could also be something completely unrelated.
Like you, I also used to suffer with my right leg buckling at the knee.. this was so BAD and extremely distressing when trying to walk, I also had foot drop. I still have considerable disability, but my leg buckle and foot drop did get better once I'd had IV Steroid back in 2013 for 3 consecutive days (1 hour a day)
The expanded feeling you talk about, I think I know what you mean.. both of my legs feel like this to some degree but ESPECIALLY my feet. If feel a little bit like having a force field around my feet, or they have been set in plaster casts yes? This is also a feeling of numbness, for me it never goes away but I'm used to it now.
The QMC in Nottingham, I know it well as I live in Long Eaton :) I've had all of my treatment at the Royal Derby Hospital however. I remember seeing a Neurologist at the QMC back in 2007, I think his name was Dr Whiteley, he was good but a bit old school. It will be interesting to see what the MRI shows up, good luck with this.
With regard to a diagnosis, having an analytical mind I'd pretty much diagnosed myself I just needed the hospitals to confirm it for me. It was a long old journey however that took over a year (last count was 8 MRI's), it was a relief though to be honest because finally after several years I'd got an answer to all the strange sensations that had been going on since 2007.
I'd be very interested to know how you get on Karl, all the best - Neil.
Neil, I can relate. If I eat at a fast food or “quick burger place” I have a “rough night” with stomach issues too. --
I was diagnosed with CIS in 2012.
Neil when I met you it made me really happy cos I'd been in a dark patch for months, Then I met the gorgeous Teresa and I was doubly happy, you 2 are crazy nuts and I love that about you, you do so much for all your subscribers, sometimes just listening to you helps and Teresa is an angel, love you both and so glad you both do this Chanel cos your like morcombe & Wise 🤣😂🤗👍 I have great respect for you both & Neil your a massive help, more than you know, you put people at ease even when ya goin through hell yourself, Your 2 very special people,
Love always from Sue xxxxxxx
Thank you Sue, both Teresa and I have read your message and it's so kind and lovely of you to say so. Much love to you also. xxxx
I just want to tell you how much I enjoy your videos. Your honesty and intelligence is so refreshing.
Thank you, that's very kind of you, and I appreciate it. I'm super pleased you're enjoying my videos and gaining some insight from them. I'm guessing you found the other ones in the play list then ;-)
your videos have been tremendously helpful. I amjyst beginning to address the possibility of MS with my doctors. Everything you have talked about so far I too have experienced. I used to be able to walk 8-10 miles in a day. now i can't walk two blocks. I am diabetic and are trying to blame my problems on that. it is going to be a battle I can tell. right now I am raking cymbalta and gabapentin. keep the videos coming. so helpful.
Thank you for your very encouraging and lovely comment.. its feedback such as yours which inspire me to do more videos.. I really do appreciate it. Yes, I too used to love walking and now I really miss it because like today I've found just pottering around the house challenging. You've definitely got something going on if you're unable to walk two block when comparing it to the 8-10 miles. Hopefully you're getting yourself checked out?
When you say you're trying to blame your problems on being diabetic.. it doesn't sound crazy because I do something similar, it just makes us feel better.. human nature, and there nothing wrong with that if it makes you feel better.
You say you're diabetic, there is something called diabetic neuropathy which can in fact cause similar symptoms to MS .. I'm talking about sensory symptoms, touch and feel that sort of thing. Prolonged high blood sugar levels can damage the nerves especially in the feet, this can lead to the weird sensation and numbness. Hopefully you are managing your sugar levels ok, but you will need to get this ruled out by a Doctor.
Great to hear from you, stay in touch.
Regards - Neil.
The last year I have been having difficulty walking also. I used to walk for miles. My doctor just puts it down to my fibromyalgia which I have had for over 30 years, but never had trouble walking. About a month ago I woke up in the night with severe numbness and tingling in my hands and all the way up my arms. This lasted for about 24 hours. Now I am left with the numbness and tingling in my hands. My doctor said it is “probably” carpel tunnel. It keeps me up half of the night and is so severe during the day. I have an appointment to see a neurologist in 3 months time. Don’t know how I will manage all that time. I am thinking of just going to the hospital emergency and hopefully they may give me an MRI. Thanks for your post. Hope you are having a “good” day. Hugs❤️🇨🇦
Thanks Pamela, you're Doctor sounds like they need a lesson or two in bedside manner instead of seeming to just fob you off. They should know that tingling in the hands can be caused by multiple different things, and not just carpel tunnel (and I'm no Doctor). It's important to remember that this isn't necessarily something sinister such as MS. It could be something like a disc pushing on a nerve in your Cervical Spine, an MRI would show this. I think your idea to go to hospital emergency is a good one, it would help put your mind at rest. I do understand, my pain had me up and walking around the house the other night. I hope you have some success in figuring out the cause to your tingling hands.
Thank you Neil. I find your voice to be very soothing, as I'm down and out right now.
Hello Jennifer, I’m so terribly sorry to hear that you’re feeling so down at the moment. May I ask why this would be? I am however pleased to hear you find the video (my voice) soothing, thank you for this. In later videos both my wife and I are speaking, you may find these beneficial also. I do hope you start to feel much better very soon. 💕🙏
@@NeilBradleyMS My health is deteriorating, the current issue being pneumonia. Last year, before COVID was supposedly here in the U.S., I had a full-blown case with 5 weeks of pneumonia, leaving me more vulnerable to infection. I do believe my health concerns began with numerous tick bites around 2011-2012, averaging about 100 bites/ year. I must say that my job as a self-employed landscaper/ yard maintenance person is to blame. Currently, my sister, whose name holds my mortgage since 2003, is forcing me to sell my house, which would basically leave me with nowhere to go. brief history: I was a nurse for 13 years, until I moved to Portland, Oregon to be with the groovy hippy people. I still have those friends, but I made friends also with the meth people, & smoked meth for 6 years, until I called my Mom, who was a retired M.D. to come & get me (July 29, 2000). That day, I quit the meth & cigarettes cold turkey, no patches or programs. I hated myself. Now, life is still a struggle, but my sister kicking me out (she's a psychiatrist in Denver) is the end of me, I'm afraid. I hope you are feeling well Neil, and thank you for letting me air my grievances. peace.
Dear Jennifer, thank you for sharing your story. I too had Pneumonia for several weeks back in 2009 (I think) it leaves it’s mark and a weakness I feel. I’m sorry you too are poorly with this at the moment, hopefully you’re on meds to combat the symptoms infection.
I’m not sure if you’re aware but tick bites can also carry Lyme Disease. The symptoms of which are very similar to MS I believe.
I can see how you life currently is a struggle, and it saddens me greatly that your sister whom obviously was willing to help you in the first place, now wants to inflict heartache and conflict by forcing you to sell up, where does this leave you!. Obviously I don’t know the finer details but I hope you can resolve things with her. Being a psychiatrist clearly would yield a comfortable income, where as you at the moment are poorly and need help.
Since being so ill myself, money means nothing to me and I say this because to enjoy having money you need your health. I’m in constant chronic pain pretty much 24/7, even as I write this message on my phone, I’m waiting in the car whilst my wife shops for groceries.. my legs are humming and buzzing, plus my walking is non existent, it’s just a shuffle, not to mention the pain that goes with it all the time. I’ve only been up an hour and I’m exhausted already.
I know how it feels to want an end to the pain and anguish, but you’ve got to hang in there. A solution will come. 💕
@@NeilBradleyMS I never expected such a heartfelt & personal message. I'm emotionally sensitive, so it made me weepy, but I think in a good way. Just to know someone far away whom I've never met would take the time to even try to understand my complex issues. I am on antibiotics, but pneumonia is slow to heal. Thank you Neil. You are a really good person, & it makes me sad that you are going through such a rough spot in your life. God bless you & your wife also for taking care of you. You definitely deserve her love & care. And yes, I will hang in here & get to a better day. Peace, love & eat flowers.
Neil. I have Secondary Progressive MS. My Neurologist says that I had RRMS for probably 15 -25 yrs. The Leg Jumping You referred to in the previous video, is technically call Restless Leg Syndrome.I take Primidone at a rate of 50 mg in tablet form. I take 2 tablets In the AM and 2 tablets in the pm and it is very effective. I also take Ropinirole at the rate of 50 mg in tablet form. I take 1 1/2 tablets in the AM and 2 tablets in the PM. I don't know if you have gotten these medications or if they are available in the UK, but they have been a great blessing to me. Consider Yourself lucky that it only took from the earliest date of 2012 to 2013. I had many of the symptoms, 20 years be for an official diagnosis of SPMS in late 2013. I have had many MRI's and some show more lesions and some don't. But my physical symptoms continue to worsen. My Dr. says it is because I was not treated for RRMS that I now have SPMS. Hang In there Neil! Really enjoy Your Videos!
Hi Linda :) Thank you for your kind words, I'm so pleased you're enjoying my videos.. Keeps me motivated to keep them coming.
Ah.. so you have SPMS very interesting, I understand this to be like the second stage to RRMS which the majority of people get diagnosed with first. I'm actually going to make a video about this soon because, although I'm diagnosed with RRMS, I don't relapse! My symptoms remain unchanged, no better and no worse. When I mentioned this to the hospital they still say its RRMS, but I'm not so sure. I've literally had no new definite symptoms for three years, I've had flare ups where existing symptoms get worse and then calm down.
Yes, the leg jumping.. fortunately for me that doesn't happen very often and so I feel I don't need medicating for it just yet. But, I appreciate you letting me know you thoughts on this thank you.
Wow 20 years, that is a long time to be having symptoms without a diagnosis.. must have been very difficult for you. My very first sensory symptoms started in June 2007, but after a year or two they calmed down but never completely got better. Then in Feb 2012 it all kicked off again but this time with disability (drop foot, knee buckling, drunk walking).
Really appreciate your input Linda, lovely to hear from you, take care - Neil.
Hi Linda and Neil. I was misdiagnosed with vasculitis 15 years ago (after having 3 neurological blips in 3 years) and now am about to be diagnosed with MS. I've not had any blips for 15 years so I guess I will be diagnosed with Spms ? This current flare up is pretty bad and affecting lots of places simultaneously. I know I cannot expect an improvement in these symptoms and things will progressively get worse...... But how quickly do things get worse? Could I go years and years before anything worsening? Thanks
Hi Mark, thanks for the message. I’m sorry to hear you’re going through this. Honest answer, nobody really knows how quickly it can develop. However, it can be slowed down with what’s called Disease Modifying Therapy (DMD’s). Once you get a diagnosis, I have no doubt you’ll be given the choice of some treatment which will help you significantly in the long term.
@@NeilBradleyMS Thanks Neil. Just came across your channel a few days ago and am going thru all the videos. You are a great help and comfort. And there is just something about you and your wife that makes you very likeable and easy to relate to. It helps you are British like myself
Thanks Mark, really appreciate it! I started the channel back in 2016, and tried my best to make regular videos. It’s also a way of documenting the progress of my illness. Super pleased your going through the videos, I really hope they help you. Here if you need to ask me anything.
Hi Neil, I thought I recognised that lovely accent of yours, then you mentioned Nottingham! I am originally from Mansfield, living up in Yorkshire now though. I am finding your videos very informative, currently going through the MS diagnosis process myself. Keep them coming, they are very helpful. Thanks.
Hey Katie, that's a very 'Kool' comment and I really appreciate it. Yep, I actually live in a town called Long Eaton.. you'll probably have heard of it having lived fairly close by. Very interesting to know you're going through the same process, its took me over a year to get my diagnosis. How are things with you, if you don't mind my asking what sort of symptoms have you had to contend with and how far into the diagnosis process are you?
I'm so pleased you're finding my videos helpful, I will indeed keep them coming.. in fact I've just uploaded a new one about five minutes ago :)
Best Regards - Neil.
Going through this ecact same thing without the ms diagnosis. C4 c5 fusion last aug no change in symptoms except worsening and ortho surgeon showed me lesion on my cervical spine that no one else will acknowledge, now im homebound cant get out to appt and they send in physical therapist. I also have lupus and last hospital stay doctor treated me like a drug seeker and im so lost.
Hi Phaedra, thank you so much for sending your message. My wife and I have just read it and our hearts go out to you. We honestly feel your pain, please know that we understand what you're going through. Similarly to you (if you watch my first video) I had surgery to remove a disc bulge, but once recovered my symptoms still didn't go away! My surgeon also spotted a lesion in my cervical spine and I always remember him saying "I can fix your disc bulge, but your real problems are there" (and he pointed to the lit up area on the MRI scan at my cervical area).
Being treated like a drug seeker by a Dr must be devastating, and I can only imagine how this has made you feel. The thing is, I do understand because when we're in SO MUCH pain, you just want that pain to go away. And, if you find a drug that helps do that then that's good. It's similar for me now, I have a very strong and powerful drug which helps me with pain a lot and I continually want to take it every day because it take the pain levels right down. But on the other hand the Dr's are saying, it's not good for me long term, and I know this but what other choice do I have. I have days where I just can't function because of pain, and I'm sure you know how this feels too.
There are many days I too feel lost, and just don't know what to do with myself. I really hope you start to feel much better very soon, we're always here if you need to message back. - Neil & Teresa.
Thank you
Sharay Richburg You’re welcome, hopefully my video has helped you in some way. Take care.
Hi Neil, I was told I had the early onset of alzaimers before they said Ms I had 4 consultant's and a professor looking at my mri scans I have leasions in front right of brain and back left and also down my spine mostly at the bottom and middle of my spine, sometimes when ive injected rebif I get sharp ice cold pins and needles in my head in the same area the damage is in, when I was properly diagnosed I went alone (silly) walked out the hospital and had a massive pannic attack, was helped back into hospital and called Dave To come and get me as he works not far from there, everything was a blur, I remember the taxi driver talked all the way home and I just wanted to scream at him to shut up, the whole experience blew my head. ( It Sucks), Neil! I just managed a quite shortish comment instead of a book lol
Sue,,,,, 5 cats x
Hello Sue 5 Cats :)
Woh, that sounds like a pretty terrifying experience. There are so many difference diseases these days that a similar to each other, and I'm sure you can appreciate the Doctors have a pretty touch job getting the right diagnosis. Sounds like you had a good guy on the job though, especially if he was a Professor.
You'd have probably scared the taxi driver half to death, seeings as he was driving its probably a good job you kept your kool :)
Hmm, definitely quite short for you Sue ahaha.
Neil. x
Hi Neil...I've not been diagnosed with MS but I'm presenting with many of the symptoms. My doc thought my numb feet, legs and buttocks (sorry if TMI!) was due to a bulging disc. This was ruled out with a sacral MRI. I'm going to ask to be referred to a neurologist. I've got those building up twitches when I'm relaxing - numbness, weakness, tightening and burning almost like sun burn feeling as well as cold water ones. My short term memory is shocking too!
Thank you for sharing your journey xxxxxx
Hello Karen,
I remember when I initially went to the Dr many years ago when I first started presenting with symptoms of numb feet, I remember his words "that's a good set of trapped nerves you have there". I suppose until you've had a scan that's all they've got to go on really. A bulging disc can indeed be very responsible for all these kinds of symptoms because it can be squashing the nerve, and yes its important to rule this out, only then can they start looking into what else it can be.
Ahh Karen, I can totally relate to all the numbness, weakness, tightness and burning I really can and I do know where you're coming from there. Sun burn is often how I too describe it, its hard for people to understand though.. have you noticed the blank looks you sometimes get. My legs pretty much all of the time feel like they've been set in concrete or dried wax, the tightness sometimes is un-bearable.
Oh I see, the disc was actually ruled out (sorry must have mis-read that bit) hmm.. yes once you've been referred they will start the investigation process. Try and prepare yourself for a bit of a wait though, it took over a year to diagnose me and lots of hospital trips.
Look after yourself Karen, and good luck with your investigations.. please feel free to pop back and let me know if you wish. I'd be very interested to know how you get on.
Best Regards,
Neil.
Neil Bradley good evening...hope you are well xx I've had to MRI results back...no herniated or bulging discs, just wear n tear. So now for blood tests and I've been referred to a neurologist for another MRI....brain this time. It's good to be taken seriously xxx
Good morning Karen.. well its a nice sunny one here in the UK, bit on the cool side though :)
At least now you can rule out a herniated disc causing mischief.. good luck with the investigations, it may well be a bit of a long old journey but hang in there because to have a diagnosis for all the "strange" goings on is worth it, even if its not what you want to hear.
Best Regards,
Neil.
@@karenmetcalfe4557were u diagnosed with something
I had lesions in my brain and spine and had the "possible" diagnosis. Then had to go get the spinal tap. I had cloudy vision in one eye years ago he thinks was the first symptom but I guess cos I didn't have a lot of noticeable things he's still questioning it. 7 months now, 8 by the time I go back in, and I hate the fact it's getting worse as I wait to find out the cause.
Spinal tap, ouch! Brave! I’ve not had to have the tap thankfully, they diagnosed me from my scans, symptoms and history. MS is notoriously hard to diagnose, but you’ve definitely got a lot of neurological symptoms going in there. It took over a year to diagnose me, it’s the history that’s important and helps with the diagnosis. So if you can jot as much down with dates before a visit to the hospital, that should help a lot.
Neil Bradley I've had the leg numbness that went away, a cloudy/gray vision issue (eye doc didn't see anything weird) and these current issues and that's been it. Neuro said the vision thing may have been a first attack.
My tap wasn't as bad as I thought. The pinch of the numbing shot was the worst but tolerable. What bugged me cos it felt odd was him pushing around back there. No pain but just felt weird. They were all nice and joking with each other and that put me at ease. The one woman would rub my arm to keep me calm.
I thought 1 tap was it but I've read yearly mris and taps are some times needed if you have MS. That wouldn't be fun!
I can't walk at all, but I can get around and walk with my walker. If I go without the walker, I lean on walls and funature. .I'll use a scooter when I go out. It'll be going on 5 months that I haven't gone out. Due to this pandemic. I guess I'm in the best spot. I don't drive since my diagnosis in 2014. The dr recommended I don't.
I’m so terribly sorry to hear that you can’t walk at all. I also “furniture” walk by holding on to the nearest thing or a wall. Some days however (like today) I’m a little better and don’t have to. Usually it doesn’t last though.
Thank you so much for a detailed, yet direct story of your MS.
I am 33 and just got diagnosed yesterday, having had way less symptoms to speak of so far. it's now november, and in april i had my first real symptoms that alarmed me, (two episodes of heavy pain in one side of face, that lasted 1-2 hours each, numbness in side of face for a month, and some tingling... and now the eletric rush thru my legs when i bend my neck.)
Went to doctor and all, they couldn't find any.. I went again, and other doctor got me appointment at the neurological department, where i got scan about 1-2 months ago. And yesterday diagnosed.
I wasn't surprised at all, because I had read my journal online from the scan, which is possible in my country. ... tho... still quite a shock, and been quite down at periods... now maybe its more and more slowly sinking in what i might face.. I did have to ask the neurologist "are you sure", and so on..... but he sounded very sure.. and maybe felt the need to reinforce to me, that this is serious. I had 8~ quite visible leisions, which I too easily could see. A few more tests.. spinal thing and blood, and i guess i am on meds.
Hello there, and thank you for your message. I’m terribly sorry to hear you’ve had an MS diagnosis, all of these symptoms must have come as a terrible shock. I know they were for me. It sounds like you’ve been thoroughly tested. The tingling shooting pains you get when you tilt you neck is called “lhermitte's sign”. I’ve done couple of videos on this if you want to know more. Remember, you are not alone. There is a very active community here online, and I’m here if you ever need to chat. Take care.
@@NeilBradleyMS Thank you Neil. I am kinda over the shock, and more in a state of "do i really have this?", hoping they still can find it to be something else.
But I also see that as pretty unlikely. Odd.. funny.. sad thing is that one of cousins only a year older than me got diagnosed half a year ago, but I never thought we would have the same.
I read about Ihermitte's sign about a month ago after reading my e-journal and researching MS, so yeah, that also led me to think it probably was going to be MS. Will see your video on it, and have been looking into support groups.
I am sad to have seen that it's been more downhill for you, I only had started seeing the videos from the start, so that shocked me to watch some of the newer, I hope you stay positive too and take good care too. I saw you worked in IT, programming, I am too in IT, if you want distraction from MS maybe you could do some more tech videos, but id also understand if you gotten tired of all IT, sometimes I know I can be ^^ and just want to do all else, but its still cool.
Really good video thank you,
Thank you Franc, glad you enjoyed.
Hi, thx for sharing. Well appreciated.. I've been seeing a neurologist for almost a yr, I should have gone with my gut and seen a new one as he has the worst reviews.
I have had all of the above symptoms .related to ms. I do have several white spots on my brain and spine. This doc says to me. It would suggest MS. Then when I ask him about ms , he says why would I think it's ms😕. He wouldn't do an MRI as I've had one done 10 yrs ago😡.. Well thx to my gp. He's getting things done. Question is, have you or anyone you know been told they're just white spots. Even though I'm told by docs white spots are in fact lesions .
Hi Debbie, and thanks for your message .. a new Neurologist does sound like a good idea especially if your current one isn't prepared to do a more recent scan. A lot can happen in ten years can't it! And this is something a decent Nuero should know. I'm no Dr, but I do know a lot about MS and as a rule you are quite correct, the white spots usually mean lesions, or scarring especially if you have other neurological symptoms as well. I've also learned that some, not all Dr's really do not like us doing our own research which is now readily available online, I think they feel somehow we're telling them how to do their job. I've never come across anybody that has just been told their white spots, no. MS is difficult to diagnose because there is no definitive test, it's a case of ruling things out. If they were looking for MS with you I would expect them to be doing a full MRI body scan (Brain, full spine), blood tests and Lumbar Puncture. I'm super pleased your GP is helping you get this all sorted out Debbie, good luck. I love to hear back from you to see how you get on.
Hi Neil, hope you're having a good day😊..
When I started to listen to your video. The first thing I noticed was your symptoms are exactly like mine. I'm so glad you explained how you first started noticing the changes. Its totally how I have been for a while. 2 yrs ago I was having more problems with my speech. This neurologist only commented on all of my symptoms seem fine now. 😡. ( that was 2 yrs ago)
I just saw him a few weeks ago. I do the heel to toe test for him, which I couldn't do not even one step. His report was, very mild hes says 😠. And because I questioned his comments. He told my doc I was quite nervous. I'm not a nervous person at all.😖. Pray they figure this out soon so I can be treated and start feeling better. All the best. 👌
Did you have the dye (Gadolinum) when you had your scans MRI.
Hi Rae, I’m just going to through your message. Thank you for taking the time to watch my videos. I always have the dye but only when they scan my brain.
Sounds so much like me, I seemed drunk when I wasn't.
I feel like I'm drunk like that too! My eyes have been really weird to. It's like they have a mind of their own!! 🥴
neil first beterson then copaxone now rebif for years im thinking tysabri or ocrevus
Hi Dee Dee, yes Tysabri or Ocrevus are some of the newer and better MS medicines. They are infusions which you have at hospital so there is no need to take anything daily.
hi neil hope you doin better..my symtoms hav been goin on for 3 weeks and similar to yours and i started taking vit b12 and vitb6 and hands getting little better,,im 58 and i been a runner for 35 years and i get a tingle patch on my back that comes and goes,,my left thigh tingles and is numb but w my research i thought it mite be a nerve injury cuz i ran hills the nite before and my hams were real sore,,im not sure how long i should wait to go to the GP? Thanks!
Hey Danny, thanks for the comment and yeah I'm doing ok thanks. The symptoms you are experiencing could well be related to a trapped nerve or something to that effect. For example, a disc pushing on the sciatic nerve can cause tingly symptoms in your legs but absolutely no pain in your back. If your symptoms haven't gone away in a few days, or at least showing signs of calming down then I would go and see your GP imminently. At least by doing this you will get peace of mind and you won't be worrying all the time. I hope things improve for you, let me know how its goes. Regards - Neil.
Hi Neil, thanks for sharing. If you don't mind me asking, how many scans did you have before being diagnosed?
I have very similar symptoms to yours. My right leg and foot constantly feel like someone has been over them with sandpaper and I get sudden electrical pain in my foot that makes me stop and remove my shoe, even when we are out shopping. I can't drive long distance as my foot goes to sleep. I also have a problem with balance and just like you, my right knee just gives way.
I have had two MRI's but only on my brain. I didn't know you could get MS on your spine.
Hi Jan, MS is a disease of the brain AND spinal cord. I’ve had symptoms since 2007 but they got better, until they returned in 2012 which is when I started having scans. I’ve had a lot, all MRI and of my Brain and full spinal cord. I was diagnosed in 2013 when they found lesions in my thoracic spinal cord, I’ve never had any in my brain. Although I’m a bit of a mystery at the moment because I’ve recently have a full set of scans (brain and full spine) and they’ve come back clear. I also had a Lumber Puncture which also came back clear. This is documented in more recent videos.
I’m very familiar with pretty much all of your symptoms Jan, they’re pretty hard to deal with aren’t they. My balance started out a bit wobbly here and there. But now a few years later, it’s practically non existent. The muscles in my back used to balance feel as though they are frozen, literally they are so stiff. This effect my ability to walk completely.
I hope this information helps somewhat Jan, if you have any other questions for me please just fire away. Take care.
@@NeilBradleyMS Thank you so much Neil, what you have said is a real eye opener. I now need to watch your other videos. Oh, and its
time for me to ask for a spinal MRI.
You're more than welcome Jan .. The irony is you shouldn't have to ask, the Dr should know to do a Spinal MRI especially if you're having Neurological symptoms in your feet and balance issues. Good luck, and I'd be interested to hear how you get on.
We're your mris done with or without contrast to find lesions
They were done with Contrast.
Neil, Are you JC ‘positive’ ? Are you taking any DMD now?
I’ve never had the blood test Kevin, so I don’t actually know. I used to inject Copaxone for two years, but I stopped as I could no longer cope with the injection site reactions. I actually did a video on it quite a while ago.
I see you were taking lemtrada? What else have you taken ? Tecfidra? No infusion meds?
I’ve only taken one DMD and that is Copaxone which is injectable. I did this for about two years. As I’m now SPMS I’m no longer eligible for he majority of DMD’s.
Neil, Hi Why is SPMS outside of the DMD’s suggested treatment schedule? Is it across the board 100% noneffective?
Neil, I have ‘CIS’ /MS and I just to say that your exact diagnosis seems to straddle two types and call me annoying but why not try a DMD?
I know this is an old video but I have the same knee buckling problem. I am scheduled for an MRI on the 9th of October and also a sleep study and EEG. Did you also have the EEG and sleep study? I am pretty sure I have MS as I can hardly walk at this time. But I will know for sure soon enough. It’s the not knowing that bothers me. Anyway. Thanks for all the information. It does help others with these same symptoms.
Hello there, and thank you for the message. It sure is the not knowing, I totally get that. I remember feeling relieved when I got my diagnosis, only thing is now I’m in no mans land again because they no longer think it’s MS I’ve got (see later videos). No, I never had a sleep study but I’m pretty sure I’ve had a few EEG’s. I’m sorry to hear you can hardly walk, that makes two of us. Just going to the kitchen for me is a challenge, the stairs take forever. I’m glad you found the video helpful. Best regards. Neil.
Neil Bradley thank you. I agree, it’s the not knowing that is making me crazy right now. I will keep watching and learning from you. 😊
Thank you, always here if you need a chat. I wish you well.
Neil Bradley I wish you well also. ❤️
Hello, what kind of MS do you have? Primary Progressive or Remitting Relapsing kind?
Hi There, and thanks for the comment.. I was diagnosed with the most common type of MS Relapsing Remitting MS back in May 2013.
Neil Bradley Ti be honest' I am glad to hear that. Very manageable form of MS. Have a great sunday.
Thanks, and you too. :)
what happen too u with knees walking same here
My knees are very weak and wobbly, because of this they buckle and give way all the time. I have to be so very careful.
I understand I started wobbly legs knees weak
I lived third floor yes with the pain on the knees carrying my walker was so scared
I can well understand your fear Dee Dee. I wouldn’t be able to carry the walker up the stairs. I think you do very well.
Have u received my message about Facebook
My friend I too have MS. I do wonder about your spirituality. Are you a believer I God? Tell m how I can contact you personally. I am on Facebook as Rick Kelly.
Hey Tommy, thanks for the comment and I'm sorry to hear you have MS. I'm interested to know how your symptoms present themselves and when you diagnosed?
Did u have to have a lumbar puncture?
Noooooo! I was way too chicken to have one of those! How about you?
Thing is, I was showing many other classic symptoms of MS and that was enough to diagnose me without the need of a Lumber Puncture. I still think it could be on the horizon though.
I've not had any extensive tests yet. My neurologist gave me the bad news 4 weeks ago. And im currently waiting for a appointment with the ms clinic in Southampton.
The MS Clinic will look after you, they were excellent at the hospital I went to in Derby. I guessing your form of MS is RRMS (Relapsing Remitting), they will more than likely talk to you about DMD's which are Disease Modifying Drugs which will help reduce the rate of relapses you are having.
+Neil Bradley I don't know what form of ms I have atm. But I wish they would hurry up as I do not like feeling like this. I have vertigo atm too. Today had been horrible. Got up earlier to go to bathroom and came over all faint.
Hmm, that is not good at all and I feel for you.. I do like our NHS as the care I've received has been excellent but the downside of course is, we do have to wait several weeks for our appointments. Pretty sure your GP might be able to help with the Vertigo, might be worth a visit to get something to help with the symptoms. I'm currently waiting for my annual appointment to come through from the hospital, it usually August time, but hey we'll be in September soon. I'm thinking of chasing them, it gets later each year.
Dr. Whitley.........yeah I saw him. Very arrogant man. Made me feel like I was a putting it on and wasn't worthy to walk through his door.
Well.. you got it in a nut shell there Karl, to be honest I was checked out at the QMC back in 2007 when all my symptoms started. Dr. Whitley diagnosed Transverse Myelitis (inflammation of the Spinal Cord), he did make me feel very un-nerved and his bedside manner was appalling. I suppose what I'm trying to say in a very nice way, is yes Arrogant. In fact, that's why when in 2012 I had a major relapse I didn't want to go to QMC.. my Dad had recently had excellent treatment at the Royal Derby so I decided to go there. I've never looked back.
A lot of these symptoms match what Lyme disease does to you. It appears to be the most undiagnosed, missed serious disease out there.
Thank you Kathleen,
Yes I agree with you the symptoms between MS and Lyme disease are indeed very similar and it does boil down to having a good Dr diagnose you. However a Dr is only as good as the information that is given to him/her, I can appreciate that diagnosing Lyme can be a tricky one.
Regards,
Neil.