Old 07-06-2010, 11:13 AM #1 (permalink)
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Default Trying to understand

Hello

Recently diagnosed with lower motor neuron disease and looking for any help and support anybody feels they can give me. I can't tell you how I feel but I suppose most people on here have been through it.

There's loads of stuff I don't understand and would appreciate any ideas people have on it. My neurogolist says I don't fit the pattern for motor neuron as I have 'slight' damage in many muscles in my body. I have also tested quite high for myasthenia gravis but doesn't that happen sometimes anyway with some people with mn? Being treated with mestinon at the moment-can't say I notice a great difference through my strength does vary throughout the day. Does anyone else have that? Sorry to ask so many questions-just trying to get my head round things.

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Old 07-06-2010, 12:40 PM #2 (permalink)
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Default Re: Trying to understand

Mally,

Sorry you have to be here, your story is a little confusing...If you tested high for the antibodies for MG then doesn't it mean you have MG?
I never heard of anyone having the antibodies and not having MG, (but I am not a dr). What are your symptoms? Have you seen a nueromuscular dr. or is it just the local nuero that you are seeing.
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Old 07-06-2010, 01:33 PM #3 (permalink)
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Default Re: Trying to understand

Crystal

Thanks for the reply. Good to hear from you.
I have had symptoms for a couple of years or so, maybe more, that I just put down to the aging process (I'm 57) and have always been of slight build and never the strongest person. I noticed some weakness in my legs though I can honestly say that there was no deterioration over that 2 year period from when I first noticed it. There were some problems in my wrists and arms too-finding it more of a struggle to lift heavy things but not to any significant degree.

To cut a long story short, I was referred on from several specialists to a neurologist who is supposed to be the specialist in my area with motor neuron disease.I had a lot of tests as he could not find enough physical signs to suggest a diagnosed of mn
He has now said that I have a lower motor nueron disorder that is A typical as there is 'slight' denervation in many muscles in my body. He has also said that there is a mismatch between the muscle atrophy and the amount of strength that I still have.
And then he found very raised enzymes for myasthenia gravis.

My symptoms have increased over the last 6 weeks or so to a feeling of generalised weakness. I have muscle atrophy especially in my arms and across my shoulders. I have very few fasciculations that I am aware of-not at all some days. I get odd buzzing sensations in my hands and feet and around my lips especially at night.

I've really gone on here-don't mean to be a bore. Make any sense to you?

Mally
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Old 07-13-2010, 07:38 AM #4 (permalink)
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Default Re: Trying to understand

Dear Mally

If you have muscle wasting (atrophy) than the test that will determine if PMA is the EMG, where the doctor/technician does a needle pricking (that is what I call it) test and it will let them know if you have or have not activity going on.

Also, not sure if the UK has a ALS clinic where they treat all types, including, PMA, and see it everyday. We had stuck with one neurologist for a year (went the IVIG route)
and finally went to ALS clinic and that is where we found out it was PMA

God bless you.

Patty

husband fell and passed away 6/22/09
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Old 07-13-2010, 01:04 PM #5 (permalink)
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Default Re: Trying to understand

Hi Patty

Thank you for your reply. I really appreciate your time in responding. We don't seem to have the same facilities over here as you have in the US. I've read a lot on here about the Mayo Clinic that everyone seems to have a great deal of respect for. We don't have anything similar here though I would really like to get a second opinion from someone who, as you say, sees it everyday. My consultant is a general neurologist with an interest in motor neurone.

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