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GP said unlikely to be ms!

Hi All, To cut a long story short I have had various neurological symptoms since June 2012 (thinking back there have been odd symptoms over the last couple of years). The last couple of weeks I seem to be worse and having new and worsening of symptoms. I had an MRI scan of head 4 months ago which showed two lesions (Don’t know where in the brain). I have since had an LP 3 weeks ago, I phoned my GP today to see if they had results as my appointment with neuro isn’t until middle of may. Apparently one of the surgery’s doctors had a quick look at my results (apparently there was alot to read) and said it looks unlikely i have Ms, I said did it not pinpoint to anything else to which they didnt really say as want me to go into he surgery to go through it with me. Does anybody know what else could be wrong and is it right they can from the Lp results say its unlikely to be ms? I need to know whats wrong with me as its seriously affecting everything and everyone in my life. Sorry to ramble on. x

Hi :slight_smile:
Not sure if I’m the right person to be commenting on this post as I’ve only been recently diagnosed myself (Feb) but I can speak from personal experience.

When I first had my MRI done, I had swelling and lesions on my brain and my neurologist said ‘I normally would be telling you that you have MS but you are too physically fit in clinic, which is a good thing because MS would completely turn your life upside down’.
Next time I go to clinic after my LP he says ‘This is the last thing I thought I’d be telling you and there is no easy way to tell you, but you have MS’.
It definitely felt like he brought me to believe everything would be ok, to then turn it on its head. I guess they had to rely on what I was like in clinic on that day as well as MRI scans/LP results so maybe a bit deceiving!

I’m not sure if it’s different for everyone but they seemed to know from the results of my LP that I definitely had MS and any thoughts or theories on any other conditions were put to rest.

I’ve found previously that my GP wouldn’t want to discuss my results as my neurologist understands what the scenario is better and they conducted the tests, not the GP. I know that the wait for the neuro appointment is frustrating (believe me!), but don’t feel disheartened. Your GP probably doesn’t want to give you the wrong idea about anything if he/she can’t figure it out from your neuros notes.

My neurologist might have freaked the life out of me at 22 years of age saying if I had MS my life would change completely, but at the end of the day I am the same person I was before and it feels better knowing the reasons for some of my odd behaviour or feelings I’ve been going through.

I can’t offer advice about alternatives of what your LP results could mean, maybe others more experienced could offer better advice?

All I would say is don’t despair or feel down, as soon as your medical professional feels confident they will communicate what they have found to you and don’t be afraid to ask questions as whatever it is - you need to know what’s happening or how it could affect you.

I hope you get the answers your looking for :slight_smile:

Rachel

A positive LP supports a diagnosis of MS however, while a negative LP makes MS less likely, it does not rule it out. Your GP cannot draw any conclusions from the results whatsoever.

Karen x

There is a “Barts MS Blog” on the web and the prof on there says that he does not believe that ms people with a negative lumbar puncture have true MS. If you go on and type in “negative OB bands” you can read it yourself.

Moyna

Interesting, this. Moyna; I went on the Barts blog and the differing views did get me thinking, so thanks for the suggestion. (I really would like to know what sort of methodology the use for arriving at the stats listed.

With me, I had a spinal MRI showing numerous lesions, ditto my brain. However, my LP was clear.

I’m 43 and have had symptoms for the past 6-7 years. Starting with difficulty walking and keeping balance, shortly followed by drop foot and spasticity, to not being able to run to struggling with grip and movement in my left hand and arm. Has been getting steadily worse over the past 3-4 years and, within the past 6 months (since first neuro appointment) I have been dropping things with my left hand and getting electric shock type sensations at the tips of my finger when I type or swipe my kindle. Kind of textbook ppms.

In short, clinical history matters as much as MRI and LP. To arrive at a dx they have to consider all three and tick at least two, from what I can gather.

I’ve got a new neuro apt with an MS specialist in a couple of weeks and am bracing myself for a PPMS dx, even though my LP was clear.

Chin up though, as whatever happens there is a lot of support out there.

There is a basic fact about ALL tests: a 5% error margin. Even if we accept Prof G’s supposition (and ignore the fact that, no matter how good he is, no one is free from the influence of their own beliefs), a negative result cannot rule anything out. (Equally, there is a 5% chance that positive results are false.) Irrespective of the LP, if your history, brain MRI and spinal MRI are consistent with the McDonald criteria for PPMS and alternative diagnoses have been ruled out, then logic dictates a diagnosis of PPMS. If we take the pragmatic view, the most important thing is having alternatives ruled out, for one simple reason: there is no treatment for PPMS and so the only risk for the patient with regard to misdiagnosis is the lost opportunity to perhaps have been treated for the actual condition. However the upsides are considerable, not least of which is being able to tell people (and officials) what is wrong. LPs are not a definitive test for MS. A negative result should make a clinician look harder for an alternative explanation for a patient’s symptoms, but it cannot rule out MS. Kx

Hi, my journey to diagnosis (or not!) took 14 years.

PPMS was strongly advised as a possible dx. I lost mobility very quickly.

Over the years I`ve had 4 MRIs, 2 LPs, 2 EMGs, a VEP, and oodles of bloods. Everything came back normal.

Last year, I was finally told I definitely do not have MS.

I havent got a complete diagnosis, but one called Spastic paraparesis/cause unknown. It may turn out to be hereditary. If you want to know more, google the condition.

luv Pollx