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Wally044

New member
Joined
Oct 10, 2008
Messages
7
Diagnosis
03/2009
Country
UK
State
North Yorkshire
City
Skipton
Hi All
Ive had 12 months of pregressive atrophy in hand and now starting towards wrist and arm. Fascit in hand and arms as well as through legs. Had 2 MRI but nothing to show. tumor etc. Also 2 EMG and nerve studies which show Lower motor nerve comunication to hand missing. So I take this to be abnormal. Now the last time I spoke to the Neuro I asked him if it could be MND he just dismissed my concerns and I am now awaiting a Lumbar Punch result and genetic blood test. Am I barking up the wrong tree in being woried its MND or should I press im further.:?:
 
Hi there,

When my partner was first tested (EMG/NCV tests) his results were inconclusive and had to be repeated a few months later.

Are they going to do further EMG tests? Have they detected any abnormality through EMG testing in any other part of your body? It seems that whatever damage to nerves supplying muscles you have is localised, and perhaps they are waiting to see if it progresses further. There are many reasons why abnormality can be shown by EMG testing, and maybe at present the clinical picture is not clear enough to provide any kind of diagnosis.

EMG tests detect lower motor neuron involvement only, while physical examination can provide pointers of any upper motor neuron involvement such as brisk reflexes, Hoffman and Babinski sign and so on.

Regards, Danijela
 
I had facics, psw, and fibrillations in my left leg and left arm everywhere, this is also the side that is weaker..... A year later they now say that the EMG is normal.... and they have no concern as to speculate what caused this previous abnormal EMG or muscle wasting. They wont even consider MND unless it shows in places that have no visible signs and if you only had a small area that showed problems, MND wont even be on there radar.
 
Hi Danijela & Sammantha
Your posts have informed me and perhaps the 3rd Nerve study and results will give some answers.

Many thanks, Ian
 
Hi Ian,

unfortunately, there seems to be quite a bit of waiting around with all neurological conditions. Blood tests and lumbar puncture ought to give a clearer picture, and can confirm as well as rule out a number of possible conditions.

It is important to maintain a positive attitude and hope for a quick resolution.

All the best,
Danijela
 
Hi Danijela
Had an interesting few months since last communicated. The 3rd EMG confirmed LM damage, so no change there. Then neuro called me in to give me an IVIg treatment, old me he had diagnosed Lewis Sumner syndrome. Ok i thought at least there is a treatment. However a few weeks ago i had another meeting after a follow up IVIg treatment only to be re-diagnosed with MMN. I just wonder how many alternatives this man can come up with :) Hope now lies in my own GP who has lost confidence in the neuro and is calling for a second opinion. Trying to keep positive. :)

Ian
 
Wally, there are a very few people on this forum who are familiar with CIDP... Laurel's husband has the MADSAM variety (Lewis Sumner)... She has talked in the past about how her husband's symptoms presented, I believe he was originally diagnosed with MND.

I've heard it is hard to distinguish between the two. Incidentally, my own neurologist is the daughter of the Dr Sumner (of Lewis Sumner syndrome)...
 
Wally, you know both CIDP and MMN are both manageable. We are pulling for you.
 
Wally my husband is the fellow who has CIDP--MADSAM (Lewis Sumner). I think many who have MADSAM wind up being diagnosed with MMN. I know with my husband he doesn't fit all of the MADSAM or MMN criteria. Often times they will diagnose MADSAM and somewhere along the line they will prescribe steroids. If the person gets really weak and has a bad response to the steroids they often are then diagnosed MMN. I think there is much controversy over the criteria for diagnosing so don't be too hard on your neuro. You do know that you will need ongoing treatment with IVIG don't you? i.e. monthly usually at 1 G per kg. of your weight.
Laurel
 
Hi Ian,

thanks for the update. I am pleased that you have a diagnosis (or two to start with :)) and I am glad they are ruling out MND. As the others already said both conditions can be managed/treated and are a better outcome than MND. Looks sunny here today (Bolton) so maybe we will venture Clitheroe way (we like walking around there). Wishing you all the best, Danijela
 
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