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dp1969

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Joined
Apr 23, 2010
Messages
46
Reason
PALS
Diagnosis
06/2010
Country
US
State
CO
City
Denver
I am new to this forum and wish I never heard about it!

I am 40 yrs old Married with three beautiful daughters; Abby 13, Hannah 10, and Gracie 7.

I was diagnosed with Monomelic MND in December of last year. Physician was a real charmer..."congrats you have MND, not ALS. Can't use your arm/hand and it WILL progress, can't tell you when so enjoy what life you have left". Hopefully some day he will get his:evil:!

Similar story as all those I have read...right arm/hand weakness & atrophy started in July of 2008; had a c4/c5 fusion done in early 2009 and symptoms continued to progress. At this point I have lost almost full use of my right arm/hand.

Since diagnosis in December I have started to get fasciculations throughout; mostly in my left arm. I am also noticing spacticity in my legs and increased weakness in my left arm. Obviously I am scared, concerned, angry, etc. etc.

Does anyone know of studies that track fasciculations (amount, location, timing) to ALS progression?

Also, any insight into helpful ways to slow progression are appreciated. I am on massive supplements (Vit B, E, and anti-oxidants). As well as an organic and gluten free diet.

Thanks,

Dan
 
Hi Dan,

Were you diagnosed with monomelic amyotrophy? If so, the outcome should be much better than ALS. I can refer you to specific studies on fasciculations/progression but from what I learned since my partner's diagnosis there seems to be very little consensus on why they occur, what they indicate and in what way their presence relates to progression. Benign fasciculations can occur in healthy individuals. My parner's are stronger when he is stressed out.

Regards, Dani
 
Hi Dan, I'm sorry about your recent progression...MMA is a focal condition; I suggest you consult a well trained neuromuscular specialist for a differen. diagnosis. It could be so many other conditions presenting with symptoms you describe...
Re: your question on fascics... I reviewed a number of publications suggesting that fascics do not play a predictory role in progression of MND.
Following are a couple publications that talk about prognostic value of fascics in MND.

"Fasciculations: what do we know of their significance?
Desai J, Swash M.
Department of Neurology, The Royal London Hospital, UK."

"Strength, physical activity, and fasciculations in patients with ALS.
Mateen FJ, Sorenson EJ, Daube JR.
Department of Neurology, Mayo Clinic, Rochester, Minnesota, USA. [email protected]".

Should you wish to review these, you can find them on Pubmed.
Best wishes,Erica
 
Congrats on not having ALS, I know that doesn't help though. AS far as the fasciculations, there are no studies and everyone has a different version, (read all the posts here as I did). Mine are benign, and I almost thought they were gone, but today I wore shorts, and watched them flicker about my feet and calves nearly few seconds.
 
relating this thread to the one about doctors. Months ao when I said to a hospital doctor that I could feel fasciculations all over, she replied "Oh, no; you do not feel them. You can just SEE them." And she was there to help make a diagnosis!Their diagnosis: all in the mind!
GRrrrrrrrrrrr
 
Thank you for your kind responses. I asked if it was monomelic amyotrophy...I was told it was MND; meaning he has no idea. I did see another neuro ho apparently did a fellowship in neuromuscular disease and he agreed with the diagnosis of MND. I think that is why I am so concerned with the fasics I seem to be developing.
Thanks again,

Dan
 
See them but not feel them ? What garbage! My neuro has said he sees them when I am not feeling them, but I can definitely feel them. That was the main reason he told me I had slow progressing ALS not PLS. I don't know that I have read or heard anything that convinces me that fasics are an indication of progression. Mine come and go, do not keep me awake or wake me up, but they do seem to be related to stress and anxiety. I feel them mostly at those times, and when I first got to bed, and my body is beginning to relax. I pretty much just ignore them.

Hang in there, Dan. I hope you do not have ALS, but I would try not to dwell on it, and enjoy your family and live a normal life as much as possible.

Peace and prayers,

Pam ;)

"Relax. God is in charge"
 
Hi Dan-- you mention that you were seen by a neurologist who did a fellowship in neuromuscular disease, but have you been seen by a neurologist who specializes in ALS and related neuromuscular diseases? If you are concerned about this actually being ALS and not monomelic amyotrophy, a form of motor neuron disease which, from what I have read, typically strikes males, starting between the ages of 15-25 (if my reading is correct), then you should try to see such a specialist as soon as possible.

There is an MDA/ALS certified center right there in Denver... have you been there?

MDA/ALS CENTER AT THE UNIVERSITY OF COLORADO
(303) 315-7221
(303) 315-6796 FAX
E-mail: [email protected]
Steven P. Ringel, M.D., Director
Health Sciences Center
4200 East Ninth Ave. Box B-185
Denver, CO 80262

I really hope you have something other than ALS. Peace and all best wishes to you and your beautiful family.

Sandra
 
I can feel and see mine so, I'm changing mine from fasciculations to spasms.
 
Sandra -

Thanks. Dr Ringel (who is listed in your reply) is the one that gave the monomelic MND diagnosis. I see him again next month and will futher discuss Monomelic anyotrophy.

Regards,

Dan
 
hi dan i was wondering if they had you do an emg test to determine als out that i think would be the thing to do ihope and pray the outcome is good hang in there miracles happen everyday
 
Web can definitely FEEL them and we can all SEE them! He says that they are annoying. He is now beginning to have spasms but I do not know if it is in area's that were having fasciculations prior and no longer fasciculating. There is absolutely increased fasciculations when he is stressed or fatigued. It does seem that when he no longer has fasciculations in a muscle that he then has atrophy and also a loss of sensation in that area.
 
Jeff P -
Thanks. I have had multiple EMG's (and nerve conduction studies); the last was in January. It showed abnormality in the right arm/hand, but "near normal" on the other appendages. It was done prior to having the fascic's I am experiencing now. The dr stated that from what he found there was no way it could be MMN; I assume no conduction block.
Dan
 
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