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Is this L'Hermittes and why am I not being diagnosed???

Hi everyone, I am wondering if you can give me some advice. To cut a long story short, I have been having symptoms now for 3 years. I used to run and indeed ran the London Marathon so was fit and active. I have had 3 MRIs which show "numerous lesions in cerebal white matter inc. some juxtacortical or periventicular + to the right of the 4th ventricle and a plaque on the right side of the spinal cord. C2 and C6/7. I have significant weakness on my right side and muscle spasm, weakness etc. I also have a very stiff right shoulder muscle for which I am having physio and have had this electric shock like nerve sensation for about 6 months when I put my head down. I have been prescribed Gababentin but decided not to take them because it is not really pain but a sensation which I can live with. What concerns me though is that - could it be something else? Should I ask for a chest xray? I am not getting neurotic but the fact I have only been diagnosed with Probable PPMS keeps me wondering what is missing, why cant he diagnose - I think I have both brain and spinal cord and if this is L’Hermittes , then it is another attack? Not knowing for sure is the worst thing.

I have had a clear Lumbar and bloods and nerve conduction study showed carpal tunnel syndrome which I don’t actually think I have because I don;t have any pain. Bascilly should I just accept “come back in 6 months” or should I be asking for other tests/x rays to confirm what my right shoulder pain really is?

Thanks for listening.

xx

It does sound like L’Hermitte’s which is caused by a spinal lesion, but if you are worried you should ask your GP for a proper investigation to rule out other causes - stress does not exactly make life with MS any easier!

These are the latest diagnostic McDonald criteria for PPMS (Polman et al, 2011):

PPMS May Be Diagnosed in Subjects With:

  1. One year of disease progression (retrospectively or prospectively determined)
  2. Plus 2 of the 3 following criteria:
    A. Evidence for dissemination in space in the brain based on at least 1 T2 lesion in at least 1 area characteristic for MS (periventricular, juxtacortical, or infratentorial)
    B. Evidence for dissemination in space in the spinal cord based on at least 2 T2 lesions in the cord
    C. Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index)

From what you’ve posted, you have 1, 2A and 2B, in which case you meet the criteria.

I think you need to push the neuro for an answer. It is unfair to leave you hanging like this, worrying about other possibilities. Will your GP write to the neuro suggesting a second opinion if he/she is unsure of the diagnosis or at least asking why you have not yet had confirmation of PPMS? If the GP is unsupportive, you can always straight out ask for a second opinion. You can cite the McDonald criteria as grounds - you meet them but have not been diagnosed.

Good luck!

Karen x

[quote=“rizzo”]

It does sound like L’Hermitte’s which is caused by a spinal lesion, but if you are worried you should ask your GP for a proper investigation to rule out other causes - stress does not exactly make life with MS any easier!

These are the latest diagnostic McDonald criteria for PPMS (Polman et al, 2011):

PPMS May Be Diagnosed in Subjects With:

  1. One year of disease progression (retrospectively or prospectively determined)
  2. Plus 2 of the 3 following criteria:
    A. Evidence for dissemination in space in the brain based on at least 1 T2 lesion in at least 1 area characteristic for MS (periventricular, juxtacortical, or infratentorial)
    B. Evidence for dissemination in space in the spinal cord based on at least 2 T2 lesions in the cord
    C. Positive CSF (isoelectric focusing evidence of oligoclonal bands and/or elevated IgG index)

From what you’ve posted, you have 1, 2A and 2B, in which case you meet the criteria.

I think you need to push the neuro for an answer. It is unfair to leave you hanging like this, worrying about other possibilities. Will your GP write to the neuro suggesting a second opinion if he/she is unsure of the diagnosis or at least asking why you have not yet had confirmation of PPMS? If the GP is unsupportive, you can always straight out ask for a second opinion. You can cite the McDonald criteria as grounds - you meet them but have not been diagnosed.

Good luck!

Karen x

[/quote] Why aren`t you my neuro?

luv Pollx

[quote=“MS43”]

get in the queue Poll and keep a place for me!

xxxxxmandy xxxx

LOL! I wish I was. And I wish that, if I was a neuro, I had the time and the budget to take on just the “difficult” cases and keep working on them until I got the answers.

Limbo SUCKS

Karen x