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KANSASTOM

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Hello,
I am new to this forum, but have been reading posts for the last month. I am 44 year old male with muscle atrophy in my left calf muscle and pes cavus left foot and hammertoes. Four months ago I had an emg that was consistant with ALS or Distal Spinal Muscular Atrophy, this emg was performed by a Physiatrists. After these results I went thru the usual tests (MRI and blood work). The MRI showed two herniated discs and spinal stenosis. This may explain my results for my lower body but my upper body was abnormal also. I then was sent to an neurologists who examined me for 15 minutes and looked at my emg and said I had ALS, I was surprised and stunned. This prompted me to research this disease on the internet, which I quickly learned there are alot of diseases that mimic ALS. None of the Doctors ever asked me about my family history, which I know believe was a huge mistake. I now beleive what my father and grandfather had/have was some sort of neuropathy. We always beleived it was a bad case of rheumatoid arthritis, my father is currently 74 and has disfigured hands and feet, his father was the same and passed away at the age of 89. My current Dx is ALS but I am not sure if I should get another opinion, I have no upper motor neuron signs. Does anyone have these symptoms and ALS, my leg has been the same with now progression for a year and a half now.
 

crystalkk

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Tom,

Welcome to the forum, you will find alot of great people here.

I would definately get another opinion from an ALS specialist. If you have no upper motor signs it could be nuemerous things. CMT is a form of nueropathy and is usually distally with pes cavus foot and hammertoes
There is also MMN another form of nueropathy which is treatable and there is no upper motor nuerons signs. Their are a few people on here that were 1st diagnosed ALS and got a 2nd opinion and are being treated for MMN. Where in your upper body was the abnormalities on emg. Or like you said distal muscular dystrophy.

I am not a dr. but without any UMN signs you can't have ALS it would be it's varient PMA.

Good Luck with your 2nd opinion,
 

KANSASTOM

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Thanks for your input it really helps. I think you are right a second opinion is the right thing to do. I an going to get a copy of my EMG/NCV tomorrow I need to know the specifics. I will post the results tomorrow.
 

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HI Tom,

I would go striaght to an als/ neuromuscular specalist. Go on the mda website and find a certified clinic. If you have somthing that can be treated, you would want to start.
If you have this atrophy for alomost 2 years and no weakness, that I think would be good.

My father in law has spinal stenosis (he is 73) super bad. He was in a wheel chair at one point with it. He also has bone spurs to add to the pain. Well, in his case, he has no atrophy any where on his body what so ever. Maybe it can happen, but in his case it has not.

What is pes caveat & hammer toes? sorry I am mrs. nosey! but anyone who knows please reply!

Take care Tom and let us know what develops for you!

April
 

KANSASTOM

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Pes cavus is high arches in your feet and hammertoes are bent down toes. I am not sure is these are symptoms of ALS.
 

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thank you! I have the highest arch feet! but I always have!
Hammer toes-do you mean hanging down more than normal? or bent under? I thought alot of folks toes kinda arch a little down? no? wow, I am nosey. I am not sure why I care about hammer toes!:-D
 

KANSASTOM

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Hammertoes are kinda like the toes want to curl under the front of the foot. My left side is alot worse than my right.
 

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kansastom

OK, one more question:

when you walk do they curl under and feel funny? I am wondering becasue my neuro noticed before i did that my toes dont move up anymore without help from my big toe.
I can move my toes, can you move your toes Up and down? I just dont know if they will curl becasue i cant move up and when i walk, i dont really feel them like i feel the other side. I feel like when i walk, I am using my big toe rather than all my toes.

Do you mean curl under the way als curls folks finger down?

Thanks,
april
 

KANSASTOM

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My toes are permantly bent down even when I am not walking. They don't hurt or move up I can move my toes down but not up even my big toe doesn't move up, I still have plenty of strength. Go to YAHOO and type in hammertoes I think there is a good picture on Wikipedia I know there is one for Pes Cavus foot.
 

crystalkk

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Tom is it difficult to wear shoes with your toes in that position.
 

KANSASTOM

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Yes sometimes the top of my toes rub the the inside of my shoe.
 
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