PLEASE can anyone offer advise re: the following -
(I was admitted into hospital in late 2011, after suffering with increasingly worsening of mobility and electric-shock like pains in my neck going down into my body. I had become housebound and was unable to walk without considerable help.
To cut a long story short, I was given a 95% diagnoses that I had MS. I had visual problems (I kept seeing double in my right eye). I was advised this was bi-lateral intranuclear ophthalmoplecia.
I have been under the MS Consultant for 2 years now. He referred me for somatosensory Potential response tests approx 15 months ago - but in 2012 I became critically ill, and was in a COMA and spent 2 months in hospital recovering. I then had a really bad fall, & broke my right hip for which I had to have an emergency Hip Replacement in April 2013.
I finally had the planned Evoked potentials tests, about 4 weeks ago.
I have now received a letter from the MS Consultant, who has advised that I need to have the tests repeated. He has stated that they have been unable to identify ANY Somatosensory evoked responses from my arms OR legs.
He has also stated that "if this finding is confirmed then it may mean that a lumbar puncture is NOT reguired.
I am totally confused ! What does this mean? If there is NO response in either my legs or arms, does this indicate/confirm that I HAVE got MS ?
I will be grateful if anyone can advise please.
Goodness, you have been in the wars. Sorry, I have no idea about what those test findings mean, and if I were you I would talk it through with your GP to see whether he/she can explain or, of not, call the consultant’s secretary and ask him/her to find out from the neurologist for you.
Oh dear that sound very confusing! You could read it either way if you know nothing about SEP’s (like me)!!
I had them done recently - as well as an EMG I think - the doc doing them said that they were ok other than a patch over my right foot that usually corresponds with L4/L5 vertebrae damage (I’ve had problems there in the past)
While he was doing them he looked at my notes and talked to me about the investigations I was having and he mentioned the ‘Probable MS’.
When he was done I asked ‘if everything was ok - other than the spot on my foot - then would that rule out the MS?’ He said that on the contrary if it was abnormal then it would be more likely to indicate a ‘peripheral neuropathy’ cause!!
I wish I’d asked him to explain it further but I was so flummuxed by the needles for the EMG as well that I couldn’t wait to get out of there!!!
I have tried to read about it but I still do not really understand - I found this explanation somewhere:
“The basic difference is that in MS, the disease damage is found in the brain resulting in the failure of the brain to transmit correct signals to the peripheral nerves, whereas with Peripheral Neuropathy the damage is to the peripheral nerves at the ends of the electrical system of the human body and the problem is in transmitting correct signals back to the brain.”
Anyway - I think you should ask your GP to explain it if you haven’t already - or even ring the neuro secretary and ask if you can have an explanation maybe?
Other than that it’s a case of waiting for the test to be repeated and then ask for some sense!! xxxjenxxx
PS Forgot to ask! What about MRI’s? Have you had them and if yes did they show anything up? xxjenx
Very confusing and your neurologist is the only one with all the information that has been gathered! Its a pity that the letter isn’t clear.
I’m with Kizzy on wondering about MRI? Lumber puncture has been become much less important than MRI as a diagnostic tool.
As Alison suggested perhaps your GP could explain but when I asked my GP questions about about my Optic Neuritis he said that really he didn’t have the expertise and that I should ask the ophthalmologist. So perhaps asking the neurologist (through his secretary) would be best.
if there was no response detected. Either 1) there was a measurement malfunction or, the sensory signals are not getting to the procesing part of the brain.
Attempting to confirm the findings would test the measurement. If no response is found a second time then that would indicate MS and a lumbar puncture wouldn’t be required. It sounds to me (untrained in these things) that if the tests are negative, that a DX of MS is likely.