A question about ALS

[johnporter]

Hi my name is John I am 40 years old, I am under investigation for a muscle wasting disease. Although the current theory is I have a rare Muscle Dystrophy. I am not so sure as there is no family history of this disease but there is a family history of ALS on my Mothers side, in which my uncle and his son past on due to the illness.

My muscle biopsy showed the fibers of different shapes and sizes and some had quite patchy staining. I had some polyphasic motor units on the EMG and reduced amplitude interference pattern. The MRI of head and neck where clear, the above test where done six months ago, now they want to do the tests again, EMG, MRI, blood tests and now a lumbar puncture.

I would like to ask a question on ALS when muscles start to Atrophy do they feel different to other muscles in the same area and is this like numbness but under the skin, you still have feeling on top of the skin?

I have been told by a number of Neurologists that numbness is not a part of ALS?

Many thanks

John

[cartman]

john

prior to dx of als i told my neuro that there was a feeling of numbness in my toes and the bottom of my left foot. prick tests showed i had a reduction in feeling in my legs which spread to my lower and upper body. over time i could observe the muscles lose shape and over time just disappear and looked and felt flat. it took numerous tests over a 3 month period at the university to dx als. sometimes this is a difficult disease to dx. i wish you the best and hope your tests continue to be negative, as you are aware this is a mean disease.

cartman

[CindyM]

Hi John. I am also awaiting a DX. I used to term the sensation I have in my hands and feet as numbness but then a Doc pointed out that my small (and now most of my large) muscles fasciculate. Now I think that what I once thought of as numbness is really those tiny muscles going off deep under my skin.

But I have definitely lost sensation, as well. They can run just about any test on me - pins, needles, small electric currents- none of it bothers me very much. And when I am cooking I have to keep a close eye on the knife. If my weak hands shake and I cut myself I won't notice until I see blood on the cutting board. My hubby jokes that we are going to ban all sharp instruments from the house!

[johnporter]

Thanks Cartman and CindyM for the information and the kind words. As numbness and fasciculation increases across my body so does the weakness, I am showing signs of subtle muscle wasting in hands, arms, across the shoulders and the legs and feet.
Thanks again for the replies. I am so glad I found this site.
Take Care
John

[sharona]

I pray that everyone here has a Happy New & That 2007 bring us all better health & some answers for a cure to this disease. God Bless

[Mark]

Hi John:

I do not have ALS but rather a variant of progressive muscular atrophy called bibrachial amyotrophy which currently means I have severe atrophy and weakness of the shoulder girdle, arms, and hands. I can't say that I have noticed any different feeling from the atrophied muscles compared to normal muscle except for the fasiculations and of course profound weakness. It took me about a year and a half and four neuromuscular specialists to come up with a diagnosis that someone had some confidence in. Good luck to you.

Mark

[johnporter]

Thanks Mark for the reply, I was told it could take six months plus for the muscle biopsy to come back with a result to rule in or out Muscle Dystrophy (That’s the back log of work that they have got!). But I get the feeling from the Neurologists that she is not convinced and that’s why they want me to take the tests again.
Thanks again
John

[cartman]

john

happy new year to you and all who read the forum

cartman

[johnporter]

Cartman,

Happy Year to you too and all who read this. Thanks again for all your help.

John