The waiting game

Hi all nice to meet you! Have read quite a few posts on here and find them very interesting and helpful. I have yet to be diagnosed. I suffered an attack in august which lasted a total of four months, it started with severe vertigo - I saw two different doctors who told me it wad just an inner ear infection that would pass in a couple of weeks (it didn’t!) my left arm went tingly and tight, was unable to use it. I also got to the point where I was so tired and couldn’t walk. Id spend the day on the sofa having to wait for a visitor so I could be helped to the bathroom! I also lost alot of weight as couldn’t get up to feed myself: was also unable to change my self Etc! Other symptoms I experienced were uncontrollable eye movements, itchy skin, unable to urinate, constipation, a dead left left, tingling in my toes, fatigue, burning sensations. I finally Saw a different doctor who sent me for an MRI and referred me to a neuro: I also went to a&e when I was at my worst, got sent home with tablets for an inner ear infection!!! MRI came back abnormal. Neuro says it looks as though I have ms but unable to diagnose yet. Have had a VEP but don’t know results: have a lumbar puncture on Monday and I am soooo scared!!! Just wanted to share my story with you all

Looks like a few of us have lumbar punctured next wk. Try not 2b afraid. I have heard a few recounts of this procedure and they have all been positive. I have mine on Monday 2. Gd luck with yrs. X

Hello, and welcome to the site

You’re very good - if I’d been unable to get up and get food, I’d just make sure I had a load of chocolate and crisps to hand every morning! Weight loss? Not a chance!!!

Try not to worry about the LP. Just to be on the safe side, drink lots of coke (not caffeine-free) and lie down as much as you can - it’ll help you avoid the “headache from hell” which a small number of people get.

Let us know how it goes?

Karen x

Thanks totallyflipped, good luck with yours too! Let me know how it goes. Thanks Karen, Will definitely let you know how it goes! Haha if it happens again Will make sure I have a stash of crisps!

Try not to worry all you people with LPs this week. Mine was very positive - no pain or headache from he’ll! I’d have one again any day. Teresa xx

Hi Teresa.

Thought you might be interested to know that Prof Giovannoni’s team at Bart’s are looking to do a study of PPMS involving LPs. If you’re up for LPs, it might get you access to trial drugs?

Have a look on

Karen x

Hi all, had the LP today and it was fine! A student done the procedure, obviously with a doctor and it honestly didn’t hurt one bit! Even the anaesthetic didn’t hurt either: I have a tattoo and I’d rather an LP over a tattoo any day!! At home now with my feet up, back aches and have cramp in my leg but that’s all! Dont know why I was so worried, think it was all the horror stories!

Great news

Karen x

Glad the LP was ok, I have one on Thursday and am a little worried but I know it will (hopefully) get me nearer to an answer.

Try not to worry (easy for me to say now!), I was petrified! Id been waiting months and was worried sick. Can’t feel any pain with the anaesthetic and if you do start to feel pain they can give you more anaesthetic! I had two lots. Let me know how you get on! :slight_smile: Kelly x

Just a quick question… Do you think I’m likely to get a diagnosis if my LP is positive and do you think I’ll have to wait till my neuro appointment in April to find out or would the neuro call me before if he has any findings??

The main criteria for an MS diagnosis are “dissemination in time” and “dissemination in space” which basically mean having more than one attack and having more than one part of the central nervous system affected. If your MRI already meets the second part but you have only had that one attack last year then it is more likely that the neuro will diagnose “probable MS” (one step down from MS). When you have another attack, the MS diagnosis would be confirmed. (The reason that they don’t confirm MS straightaway is that not everyone actually has a second attack.)

If you can remember something else that has happened to you over the years, then the neuro may count it as a separate attack and confirm MS.

If you started new symptoms anytime during the last 3 months of that 4 month attack last year, the neuro may count it as a separate attack and confirm MS. (New symptoms during the first month of an attack are counted as part of the same attack.)

The most recent diagnostic criteria are detailed in Polman et al (2011), Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. It’s free to download - just google to find it.

A positive LP reinforces the fact that it is MS that is causing the demyelination. A negative LP challenges it, but does not rule it out. I think it’s unlikely that the neuro will call you with the LP results, but they are a bit unpredictable, so nothing would surprise me! You can always call and ask for the results - you don’t have to wait.


Karen x

Thanks alot for that Karen, I get confused easily but that did make sense. Have read the Macdonald criteria but will read the one you have suggested :slight_smile: Think I’ll just wait to see the neuro in April as am getting used to waiting around lol. Lately (last two weeks) my right leg has been feeling really sensitive and I’ve been getting alot of dizzy spells, so will mention that too when I see him. Thanks again for you’re help - you are a great credit to this forum and I think alot of people would be lost without your wise words. Kelly xx