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Misdiagnosed?

First of all thank you in advance if you manage to stay with me and read this … I had a spotty virus in March 2011 which my whole family got. Two weeks after I came over squiffy at work, i didnt faint straight away but slumped to the ground. I then felt tingling and numbness spread down my left side. I was rushed to hospital and told that I had fainted and had low blood pressure. The numbness, loss of sensation and blurred vision continued on my left side and I eventually saw a neurologist. He did a head and neck MRI and it came back clear. He suggested that the virus had attacked my nervous system in the same way as MS and that it would take time to recover. Soon after i felt a heaviness in my step and began to walk with a limp. It would start a bit wobbly at the start of the day and I would be dragging my leg by the end which in turn made my hip ache as it compensated. I found myself incredibly tired and would need to nap in the afternoon as i seemed to hit a wall. The only way to describe it is that a fog descends and i lose clarity of thought and cant get my words out. It wasn’t until the autumn that i began to feel better. I had a few months when i felt much better although the sensation in my left arm never recovered fully and the blurred vision continued and would worsen as the day went on.
I had what I call ‘episodes’ on and off through the winter and it was always worse if I was tired, run down and stressed. I found myself having had leg twitching through the night to add to the list of symptoms.I was given imipramine for this by my neurologist. I started having a lot of migraine type headaches and was now feeling very depressed and at a real low. I decided to come off the meds as i wasnt sure if they were causing the depression.I had another MRI done this March, this time head, neck and spine. this also came back clear and my neurologist said that all my symptoms sounded like Atypical migraine. I had a couple of months where the MS type symptoms subsided. I was referred to my gynaecologist as I wondered if the migraines were due to hormones and am about to undergo a course of injections to suppress my natural hormones to see if the symptoms subside.
However, 2 weeks ago my symptoms came back (again after stressful period and feeling under the weather) and on Friday I felt very detached and tired and went back to bed. I can’t say exactly what happened while I lay down but felt like I was fading mentally.i napped for a while and felt better. Over the weekend i started experiences muscle spasms in my left leg.Yesterday I had a tough day at work ( I teach) and felt completely detached and disorganised. I had that squiffy feeling and my leg was bad. In the evening I started feeling sharp pains in my leg as well. Today I had additional needle like pains in my face along with usual blurred vision. My neurologist had a cancellation so im seeing him tomorrow.Surely this can’t be migraine? It ticks so many boxes for MS. I wondered if anyone else has had similar experiences? Could offer advise before I go to neurologist? Thanks so much for reading this far, Emma x

Hello Emma,

Make a list of your symptoms, stateing when and what happened and how bad they were. I'm not a medic but your symptoms could possibly be any number of things so I wouldn't presume to say it could be this or that.

Some of the things you have said could relate to MS but that doesn't mean it is.

I wish you luck when you see the neuro, do let us know how you get on.

Janet

x

Thanks Janet, will let you know how it goes. X

hello, just reading through your post,and wishing you lots of luck for tomorow,can help to have someone in there with you too,yes def with symtoms brief and to the point,youknow your body and what is going on,don't be fobbed off.

 

                              love boz xxx

angel

drs and the like are normaly unwilling to make a DX untill they are 100% certain. I got my DX after my second relapse. They did say the first time they had ideas but nothing more than that. After my DX i asked if they knew what it was the first time round and they said yes but still wanted to run more tests before they would say it was defo MS.
I hope you get the ansers you want.
James

I hope it goes ok with your neuro today .I think there is nothing worse than not knowing what is going on with your body .Limbo is a horrible place to be :( i know as im there at the mo but got my mri tmw so should have some answers soon ,i hope .

I hope your feeling better soon

Sam xx

Hi Emma x I'm undiagnosed with the docs all saying probable MS but who knows at this stage x

As for migraines I thinky you would be surprised at how they can manifest- I certainly was! I've just started doing some research into it as I have been suffering with Acephalgic Migraines during a couple of my 'relapses. 

 

I suffered what I waoul dcall 'classic' migraines from the age of 13 - 19. I would have the visual aura followed by an excruciating headache and vomitting.

I was free from these until a few years ago (45yrs oldish) when the MS type symptoms really started to kick in!

'acephalgic' basically means aura without the headache - they are very very scary - mine start as a large blind spot with a small shimmering dot - the dot then gradually gets bigger and bigger into a zig zagging, flickering arc that totally fills my vision. With it my face and down my side sometimes goes numb and I get pins & needles.

They last dead on 30 minutes - no headache - just this horrible washed out feeling for days afterwards. Sometimes I'll have 2-3 per day!

If you have the aura It's very much a neurological condition - I had an EEG after spinal injuries in an RTA 16 years ago and the guy doing it suddenly said "oh you get migraines!' - I asked how did he know that as I hadn't had one since I was a teenager and he said there is a type of abnormal 'wave' near where they diagnose epilepsy - that always means the patient suffers from migraines. He said not all migraineurs have it but when he sees it - he knows that the person gets them! 

My recent brain scan showed several lesions in the frontal lobe - migraines aparently can cause these areas of damage - so someone told me to look at this site - I'm unsure as I didn't think that the migraines could be related to all the other symptoms I get:
 
http://hemiplegicmigraine.org/
 
Hemiplegic Migraines are extremely rare but who knows eh! Basically what I'm saying is keep an 'open mind' on migraines - unfortunately people use the term to describe their severe headaches and mis the point that migraine is a very 'real' neurological disorder
If MS is ruled out for me I'm certainly going to ask to see a mirgaine specialist!!! xxjenxxxhappyflower

Hi all, thank you so much for all your advice and kindness. I went to the neurologist today. He said that you can get leg and arm pain during a migraine (will bare what you said in mind jen) but wants to do another MRI. I don’t feel like I explained myself very well and got emotional making a bit of a fool of myself( I did take notes Boz/Janet, but stupidly tried to memorise them, not good when having memory probs). I find it really hard to explain ‘the big picture’. It’s almost instinctive that I know something is wrong and never quite manage to communicate it. Think it’s because the symptoms are manageable one at a time but cumulatively it’s exhausting. Think you have to walk a mile with these symptoms before you can fully understand them. Was your first MRI clear james? Hope all goes well tomorrow Sam. Let us know.Thanks again for your support. X

Have given up trying to sleep. This is the second night of really extreme leg twitching and body jerking. You’d think i was plugged into the mains I’ve really had enough.

Hi Emma,

Mention the fact that the nightly twitching and body jerking is getting worse when you next see your neuro.

I now have a little book that I jot my symptoms down in for when I see my nurse and neuro...it's just a case of remembering to actually take it with me!!

As others have already said, symptoms like these can be related to many many things and they need to be ruled out via tests, scans etc so sometimes it can be a long haul to getting a dx of some kind. It's a really stressful and worrying time as it is so try everything you can to avoid / lessen stress where possible. Distraction can help and doing things that relax you - things you enjoy. It's a ploy to help move the worry from the forefront of our minds 24/7.  

Wishing you luck

Debbie xx

 

 

Thanks Debbie, I had been plodding along recording my symptoms for the gynaecologist that is planning to start this hormone therapy but have lapsed since my symptoms worsened. At the time I think must make a note of it and then forget so I’ll update it now with what I can remember.
Both legs are very wobbly today and I’ve just staggered downstairs ‘a la dinosaur’ to make a cuppa. You’re right though, need to distract myself. I have 3 children and work so there’s not a lot of time for moping about. I have been attending art class and I find it really relaxing though. Maybe I should start an art project at home?! (if I can find the time)
Thanks again, it’s so reassuring just to have someone listening that understands. Think that’s the hardest part, finding someone that can empathise fully. Really appreciate it xxx

That's the beauty of this site Emma - we do understand what you're going through.

It's hard to do with a family & work I know, but try to get shot of some of the 'not-so-important' chores / jobs. If you're having a real poo day then just do what you really need to do. Everything else can wait. Pacing yourself as much as poss is more important. Things like limiting the amount of times you troop up & down the stairs helps - minimise as much as you can whenever you can. Grab as much rest as you can too (ha ha!) but it's just as crucial hence minimising stuff where you can.

I love the term 'a la dinosaur' by the way....LOL....I have names for some of my less than eloquent and graceful moments.... happyIt's one of the ways I try to stay chipper thumbsup

Debbie xx

Misdiagnosed?

I'm reposting this following Pip's request to Newbies....

First of all thank you in advance if you manage to stay with me and read this ... I had a spotty virus in March 2011 which my whole family got. Two weeks after I came over squiffy at work, i didnt faint straight away but slumped to the ground. I then felt tingling and numbness spread down my left side. I was rushed to hospital and told that I had fainted and had low blood pressure.

The numbness, loss of sensation and blurred vision continued on my left side and I eventually saw a neurologist. He did a head and neck MRI and it came back clear. He suggested that the virus had attacked my nervous system in the same way as MS and that it would take time to recover.

Soon after i felt a heaviness in my step and began to walk with a limp. It would start a bit wobbly at the start of the day and I would be dragging my leg by the end which in turn made my hip ache as it compensated. I found myself incredibly tired and would need to nap in the afternoon as i seemed to hit a wall. The only way to describe it is that a fog descends and i lose clarity of thought and cant get my words out.

It wasn't until the autumn that i began to feel better. I had a few months when i felt much better although the sensation in my left arm never recovered fully and the blurred vision continued and would worsen as the day went on.
I had what I call 'episodes' on and off through the winter and it was always worse if I was tired, run down and stressed. I found myself having leg twitching through the night to add to the list of symptoms.I was given imipramine for this by my neurologist.

I started having a lot of migraine type headaches and was now feeling very depressed and at a real low. I decided to come off the meds as i wasnt sure if they were causing the depression.I had another MRI done this March, this time head, neck and spine. this also came back clear and my neurologist said that all my symptoms sounded like Atypical migraine.

I had a couple of months where the MS type symptoms subsided. I was referred to my gynaecologist as I wondered if the migraines were due to hormones and am about to undergo a course of injections to suppress my natural hormones to see if the symptoms subside.


However, 2 weeks ago my symptoms came back (again after stressful period and feeling under the weather) and on Friday I felt very detached and tired and went back to bed. I can't say exactly what happened while I lay down but felt like I was fading from consciousness.i napped for a while and felt better.

Over the weekend i started experiences muscle spasms in my left leg.Yesterday I had a tough day at work ( I teach) and felt completely detached and disorganised. I had that squiffy feeling and my leg was bad. In the evening I started feeling sharp pains in my leg as well.

Tuesday I had additional needle like pains in my face along with usual blurred vision. My neurologist had a cancellation and hes booked me in for another head MRI.The last two nights i've had  extreme twitching and body jerks resulting in me getting up at 4am.

Surely this can't be migraine? It ticks so many boxes for MS. I wondered if anyone else has had similar experiences? Could offer advise? Thanks so much for reading this far, Emma x

 

Hi Debbie,

Took your advice and have delegated housework to husband and the children today so all done much faster. Should have done some school work but sat in the garden whilst the kids ran riot.

I wrote a letter to my neuro last night with my whole medical history from the last 15 months, ( war and peace!) so that he is fully in the picture.
Came away feeling like I didn’t communicate very well at the appointment.

Feeling bit better and having friends round tonight for a quiet one. Hope you’re having a good one. X

MRI done, results next Wednesday!

That's great news Emma - not long to wait at all!!

Hope you're feeling a bit better than you have been?

Debbie xx

Hi Emma 

Thanks for the re posting,I have read it now.

It is safe to say something is causing you to have these problems even if it isnt ms.

Its a very quick turn around for your results,so hopefully you will soon know.

If the neuro does say it isn't ms don't forget to ask him what he is going to do to establish what it is then.

I do know that many people on here know alot about migraines so it might be beneficial to do a seperate post asking for info on their presentation of symptoms,on here and everday living.

Hope today is a good day

Pip