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mally

Member
Joined
Jul 6, 2010
Messages
13
Reason
PALS
Diagnosis
06/2010
Country
UK
State
England
City
Birmingham
Hi

Just to add to the confusion about my diagnosis, I received a copy of a letter to my GP yesterday from my specialist. He diagnosed me with lower motor neurone disease but his letter states that "the situation is far from clear" as I have some suggestion of LMN dsiturbance both clinically and on EMG but there are some features that do not fit this particluarly the amount of muscle strength I have left in proportion to the degree of muscle wasting. The EMG shows changes of denervation which are not very marked but are widespread and seen in all four limbs. Anybody else affected in this symetrical way? I also tested quite high for myasthenia gravis and he has started me on mestinon for this. He also notes that my IGM paraproteins have risen considerably over a period of 3 months and has asked my haemotologist to look at this. Does anyone else on here have an IGM paraprotein? (an abnormal protein that is related to Waldenstroms Macroglobulinaemia, an indolent lymphoma). This paraprotein can be related to CIDP but apparently I have tested negative for this.

I would appreciate anyone's comments and suggestions with this. I have been recently diagnosed and really struggling at the moment.

Mally
 
mally, I know a lot of people that suffer with CIDP ( via this forum CIP / CIDP - Forums ) struggled for quite some time for a diagnosis, and some with a LOT of CIDP symptoms sill don't have a diagnosed.

Wish you the best, and if you can find a more specialized neuromuscular doc it might be worth your time.
 
Hi ktmi

Thanks for your input and the good wishes. I'm going to suggest another opinion next time I see my neuro. I really would like to see someone who has more experience in this area.

Mally.
 
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