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Oct 3, 2007
Chapel Hill
Back again with another question as my sister is having a new symptom.
She's had ongoing pain/weakness/atrophy in her right arm that worsens with exertion or extended use. But recently she's woken up with numbness in her left arm and hand. No weakness, just numbness that resolves.

I've read that ALS does not include sensation changes, but it seems that people here have different experiences than what we can read about the disease.

What is your experience with numbness, if any?
Thank you.
I am not diagnosed I am one of those doc's can't figure it out. I experienced numbness that would come and go, those are now the areas I have the wasting. I don't experience the numbness now like I did in the beginning, although my feet have seemed to have just lost some of the feeling. I have lot's of the sensory involvement which is not typical of als. Hope your sister can find some answers? How old is she? Mya
Hi JessHart,

I have DX of either MMN or Atypical ALS. The Doc is not sure, because I have some symptoms of both. I have had numbness from my left foot to the knee since 2003 Jan 12, but I fell hard on my tail bone in December on black ice off a porch and landed on my tail bone on the ground. I had a back operation in March 2003, but it did not change the numbness. When I walk the numbness travels to the top of my leg. Just information that may or may not be helpful. Best Wishes, Peg
Hi peg,
how are the treatments working?

Hi jess,
My feet go numb when I am walking for a while, or when they are really cold.
Hi Crystalkk,

The treatments certainly give me more energy. They do not change the atrophy much but I can type better. with more control.

My feets would cramp a lot in the cold especially after a long day. It made it very hard to walk. Since I am not working this does not happen anymore, at least I don't remember it last winter. I have been off work for one year now. Take care, Peg
hi Peg,
Just curious, how long have yoy been getting the teatments.
If you can type better your probably not as weak.
It sounds like it is working.
What do the drs say about the atrophy, If it is MMN and the atrophy is bad will you be able to build the muscles back up.
Where are you atrophied?
Jess, my husband's legs are numb 24/7. He describes it as feeling as if his feet were encased in cement blocks. He has to make great effort to put one foot in front of the other (he has no diagnosed yet).

Thanks everyone for sharing you experiences. It's so nice to know we aren't alone out here. My sister is about to turn 30. She had foot drop about 2 years ago but it seemed to get better and was diagnosed as compartment syndrome. She still can't run or symptoms return. Then her right arm atrophied and became weak. Now there is something wrong with her wristl. The shoulder was blamed on thoracic outlet syndrome, now the PT is telling her she might need surgery on her wrist. This is just crazy. She keeps getting new symptoms and they keep diagnosing each thing as if it weren't related to the others. It seems impossible. And now surgery?

I am so sorry for everyone out there going through this. We don't even have a diagnosis but our lives and emotions are so affected. Be strong.

And thank you for sharing.
Hi Jess I feel for your sister and family. Has your sister seen a mnd specialist? It's ridiculous they are not putting all of her symtoms together, it's called they probably have no clue but don't want to admit it. It's so frustrating. maybe we should have a new section where medical doctor's could come and learn a few things from people who are going through these illnesses and learn from us instead of their text books. I don't understand the strength test, o.k. I can pass it, but ask me to walk up a few flights of stairs and see how I do, get me to lift weights and see how fast my muscles fatigue. I just don't understand. My friend said that's why they call them practicing doctors:)
She's getting worse.

My sister told me tonight that she has new symptoms of weakness in her legs and arms. She said, well it can't be ALS because women don 't get that. She's 30, of course she would think that. She said, well whatever this is it won't kill me. I just listen and agree then get off the phone and cry my eyes out. It isn't fair. I don't want this to happen to her. I just can't believe it. How can this happen to young, healthy, good people? It's unbelievable, like a horror movie. I'm so sad. And I'm so sorry to lay it on anyone here but I know you are all going through similar things yourselves.
Hi Jess,
So sorry to hear about your sister. What tests has she had done, normal or abnormal? Has she had an EMG yet?
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