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johnporter

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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

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john

prior to diagnosed 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 diagnosed als. sometimes this is a difficult disease to diagnosed. i wish you the best and hope your tests continue to be negative, as you are aware this is a mean disease.

cartman
 

CindyM

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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

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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

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Happy New Year

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

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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

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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

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john

happy new year to you and all who read the forum

cartman
 

johnporter

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Cartman,

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

John
 

mlsbishop

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04/2008
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I too have a diagnosed dejur of bibrachial amyotrophy, I say dejur because this is my fourth diagnosed since 92. I've gone from essential tremors to ALS to MMN ( had IVIG and Cytoxan) and finally this diagnosed. Both shoulders, arms and hands are affected. I still have some triceps on the right and enough left in me left shoulder to raise my arm and hand almost to shoulder level. I am unable to open or extend my fingers, but I can grip fairly well. I'm walking at least 30 minuets 5 days a week but I've noticed some peripheral numbness in both feet and toes. I was diagnosed diabetic two years ago so that may account for some of the numbness. I guess the docs may come up with a new diagnosed anytime.
 

abbas child

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Feb 29, 2008
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Hi mlsbishop. Wow, sorry you've been through the gamut with the diagnoses. I'd never heard of your current one--but I expect someone will post with information. Meanwhile, I just wanted to welcome you, congratulate you on walking your 30 minutes X 5 days per week (great!) and hope you do find the forum helpful. And may your progression in whatever this is be slow...

Ann
 

mlsbishop

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Thanks for the welcome, Ann. I have not found much on this diagnosis either and hope some information may come to light through this forum. Interestingly enough I found a reference to the same symptoms on a veterinary site sometime back, they called it 'Coon Dog Syndrome". Some of my friends may have been right about me for years.

Mike
 
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