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Long road already...advice?

Hi I’m new to all this! It’s a long story but please can you help Last June (2012) I started having a very ‘heavy’ feeling in my legs and had fallen a few times, I was very tired (not sleepy) all the time! I went to my gp who although lovely gave me no idea of cause. Four days later I had a bad fall which resulted in me banging my head, I went to the dr and she admitted me to hospital suspecting guillen barre (apologies for spelling) Ae transferred me to the neurological department where they suspected myasthenia gravis! I had every blood test going a spine MRI,lumbar puncture etc after a week in hospital they decided it wasn’t mg I had two follow up appointments where I reported new symptoms of dizziness and an occasional tight pressure (on my bra line) I was told not mg go away (politely) September through to jan I felt more my old self I was still very tired (not sleepy) and the feeling in my legs lessened but was still present! Then in January everything returned only this time a host of new stuff to accompany it… I get numbness and tingling in both arms and legs, a feeling like water running in my left leg, burning patches, what I can only describe as little spiders with static electric legs on my face legs and arms (not at the same time) I have a sudden need to go to the toilet (but not every time) my left leg has suddenly jerked a few times, and finally I keep forgetting words! I saw the neurologist who did some very quick tests on me… Reflexes normal fall to the left with eyes shut struggle to walk heel toe, struggle heel walk toe fine! Result booked in for MRI of brain! Needs to investigate ms…to say it was a shock is an understatement You are the experts what do you think??? Thank you for your time

Forgot to say…I caught a few door frames with my left shoulder, still get dizzy, have falls and tight feeling in chest but also arms! Apologies just well…frustrated and confused! Thanks again!

Hello and welcome :slight_smile:

Neurology is complicated by the fact that loads of different conditions can have very similar symptoms, so while your symptoms are consistent with MS, they could still be due to a variety of different things, some of which are relatively easy to treat. In other words(!), it does sound quite MS-like, but there is still a good chance that it is something else - hopefully your MRI will reveal all and you won’t have too long to wait for some answers.

It might be worth asking your GP for some help with your symptoms. Sensory symptoms can be helped a lot with neuropathic painkillers like amitriptyline, pregabalin, gabapentin and dizziness can respond to stemetil. Some GPs are reluctant to prescribe anything without neuro approval so be prepared to call your neuro’s secretary and ask for help.

Other than that, the best medicine in my experience is rest. So no doing the housework! :slight_smile:

Karen x

Just had a light bulb moment when I read your comment about door handles - I have been doing that for ages and thought I was just clumsy. I’ll mention it when I next see my neurologist.

Good luck with your MRI results x

Thanks for your kind responses! I guess I’m not great at admitting my body has changed! I want the old one back or at least know what I’m dealing with! I’m a very positive person and can deal with anything, as long as I know what I’m dealing with and don’t feel like I’m wasting a doctors time!

I feel exactly the same. I even said the same thing last week to my friend. I also said if I had a broken arm and my arm was in plaster everyone could see, because you appear to look OK on the outside people assume you are OK on the inside. Hopefully we will both have the answers we need soon. I’m still waiting for a formal diagnosis, I have been ‘ill’ since August 2011 doctors suspected a stroke. Stroke was ruled out and I was referred to a neurologist. First neurologist said it was migraine, even though I never get headaches, or have suffered from migraine in the past. He was not very nice and made a comment about me not having had children (which was by choice), he said “just think if my your parents had of thought the same you would not be here today”. I was so shocked I couldn’t reply. When I told my husband what he said he was absolutely furious and came in with me the next time I was the neurologist. The neurologist was OK when my husband was with me but still insisted it could be migraine or even a stroke. After many heart tests the stroke clinic and the heart specialist discharged me saying it wan not a stroke. I then asked the be referred to another neurologist. The one I see now is a MS specialist and he is really lovely. I have had 3 MRI’s, 1 lumbar puncture and numerous blood tests, and it’s still not confirmed. My neurologist isn’t looking for anyting else as the other tests he did ruled out everything but my MRI’s are still not conclusive. I have an appointment next week so hopefully he can diagnose. I also only joined the forum yesterday.

Mary x

Hi Snowdrop and Shilly, I agree with what you said about knowing what you are dealing with. My first episode happened 3yrs ago and I was told stroke to begin with, this was later ruled out and the neuro told me he suspected silent migraine (no headaches) anyway he put me amitriptyline and sent me on my way,took this for awhile,then came off it. Was pretty much symptom free for awhile, fast forward to Sept 12 and symptoms were back,investigated again for stroke loads of tests,including heart ones, again told it wasn’t stroke, but I am now waiting to be seen by another specialist for a second opinion as the specilist I’m under is unsure what it is.

Like yourselves I would just like to know what is happening to me, I know my body isn’t functioning properly would just like to know why.

Nat x

Hi…sorry to bother people but I would appreciate some reassurance! I was teaching today when I got a small circle of blurred weird vision in my right eye, this quickly got bigger and was accompanied by zigzag bright lights in a circle. I couldn’t read the board or see the children properly, I had no headache but my the top of my socket behind eyebrow hurt. I went to drs at lunchtime where the dr looked in my eye and said migraine! It has gone but I don’t feel quite with it…if that makes sense and the pain on my socket remains. I’ve never had a migraine before although my daughter suffers very badly with them (sick and takes to her bed) mine didn’t seem the same! Just wondering if anyone else has had similar. Still waiting for MRI appointment almost 4 weeks on! Many thanks sorry for whining :slight_smile:

Hi…sorry to bother people but I would appreciate some reassurance! I was teaching today when I got a small circle of blurred weird vision in my right eye, this quickly got bigger and was accompanied by zigzag bright lights in a circle. I couldn’t read the board or see the children properly, I had no headache but my the top of my socket behind eyebrow hurt. I went to drs at lunchtime where the dr looked in my eye and said migraine! It has gone but I don’t feel quite with it…if that makes sense and the pain on my socket remains. I’ve never had a migraine before although my daughter suffers very badly with them (sick and takes to her bed) mine didn’t seem the same! Just wondering if anyone else has had similar. Still waiting for MRI appointment almost 4 weeks on! Many thanks sorry for whining :slight_smile:

Hi Snowdrop, It might be the aura people get with migraine,and you can have migraines without a headache. When I was younger I used to get migraines with headache (due to the contraceptive pill) I would know one was coming as I used to get the bright spot and strange vision,I would then take migraine tablets and that tended to work.Before knowing this was migraine I used to have to do what your daughter does and take to a darkened room,(I have had to be driven home from work it has been so bad) 24 hours later,apart from feeling abit groggy I would be fine. If you still don’t fee right,go back to the doctors and see someone else for a second opinion,after all that’s what they are there for. You know your body better than anyone,and you know when something isn’t right.

Hope this helps abit

Thanks :slight_smile: Not sure how I posted it twice!

I hadn’t realised you had until you said LOL