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Vasculitis or MS or what?

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Old 12-11-2007, 03:38 PM   #1
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topsy123 HB User
Question Vasculitis or MS or what?

Being in Limboland as Im sure alot of you will realise is not a nice place to be. However, I think im progressing slowly with my neuro, towards an answer. Lymes has been investigated and they don,t think so, however they didnt think MS until this week. Every time I have walked in to see the Neuro, he says oh you look well, and usually I am. My symptoms come and go. Very frustrating!..I have had full blood count done, thats normal, B12, Folate and ESR essentially normal. However at the end of the letter it stated Vasculitis clearly indicated. So does that mean I have Vasculitis, or is it clear, I would of thought with the above tests being normal I shouldnt have Vasculitis. My neuro has never refered to that statement in that letter and never brought it up. However, my partner decided to video me when Im really bad, and show it to the neuro, in the hopes it might help with getting a diagnosis. He really wasnt interested up until the point we insisited he looked at it. He started watching it and suddenly became intrigued. The video contained small films of me walking, and having spasms. He said if he didnt know me he would instantly say I have Parkinson's because of the shuffling gait. But how can it be when my symptoms come and go. He asked me for a copy of the video to show another consultant and said he now wants another MRI, another Lumbar Puncture, (have already had one, and its positive for oligoclonal bands in the CSF) A BRAIN WAVE, whats that? can someone explain?...He is also now reffering me to a MS specialist. My first MRI showed a lesion on the brainstem wich sometime later dissapeared, so he now says the MRI is normal. I am somewhat confused as to whats going on here, and concerned about the mention of Vasculitis. Surely If I had it he would treat it, so am I barking up the wrong tree, or misreading what he wrote. Why do I need another LP when Iv had one already and its abnormal?...Why now would he send me to an MS specialist, when after all these years he said oh no I dont think its MS. The only abnormal things he finds when he examines me at the appointment is I cannot walk heel to toe, I just fall over!...Yet last month was a killer. I started getting chronic back pain in my lower back. Every time I put my head down to look down it would send an enormous electric shock feeling through my torso. My legs were buzzing with nerve pain and burning up, especially in bed. I had this sort of brain fog, couldnt think clearly, light sensitive, slurred speech, my whole thought process slowed down, (felt like I was drunk)..I had nausea and was sick a few times, couldnt walk very far atal, getting up the stairs was like climbing mount Everest, dizzyness, especailly If I pushed my self to walk to far, shuffling gait, my arms just ached and ached. Couldnt drive cause I felt like I was gonna pass out, felt like I also couldnt get enough air into my lungs at times and muscle spasms, the list goes on....I had a whole month of that, yet now I feel better again, still got bad back though. So, now Iv rambled on and on, can anyone tell me, does this sound like Vasculitis?....Do you think my neuro now suspects MS?..I appologise for this thread being all over the place, im confused and desperate for answers and advice.....Thank you......

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Old 12-12-2007, 06:44 AM   #2
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mitch512u HB User
Re: Vasculitis or MS or what?

It is good that you will be seeing a MS specialist.

'o' bands in your CSF, electrical/shock sensation when you look down (L'hermett's sign (sp)), lesion on your spine, the gait and balance issues. I had all of these sx's and was dx'd with MS. I still flunk the heel/toe walk.

Never heard of a 'brain wave' test. Perhaps it is an 'evoked potential test'.

Be proactive, ask your Dr. what he suspects.

Good luck to you,

Old 12-12-2007, 05:12 PM   #3
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taosdaphne HB User
Re: Vasculitis or MS or what?

Vasculitis is at least as difficult to diagnose as MS, and comes un many forms. My partner has it,and it manifests mostly on her skin,but also attacks blood vessels--underlying cause of pulmonary emboli which then produced a heart attack that nearly killed her. We also know someone with vasculitis of the brain. Unlike MS, it can kill you.

I would reommend checking out NIH and Johns Hopkins web sites. Hopkins is prob the best center in the country for this condition. Like MS, it's an infammatory autoimmune disease, but instead of attacking nerves it attacks the blood system and ultimately organs.

Old 12-13-2007, 02:03 AM   #4
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Bearygood HB UserBearygood HB User
Re: Vasculitis or MS or what?

topsy, I don't know much about vasculitis but the good thing I'm reading here is that the doctor is interested and paying attention to you. I think that you should call the doc's office to see if you can get clarification on the letter.

Re: the LP, maybe you can wait on that test until you get to the MS specialist -- they might not think you need another one but I would certainly go ahead with the new MRI now. (Hopefully they will do this bothy with and without contrast and ideally, include the c-spine at the same time.) The electrical sensation sounds like L'Hermittes sign.

Make sure to get copies of everything you have to get to the specialist!

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