symptoms confusing - help

[yogagirl]

confused

has anyone had TOTAL LOSS of use of ONE limb for 2 years then have it spread to other limbs.

I am getting so confused with the diagnosis of my husband's disease. Any help would be great!

 

[Bliz]

Re: confused

Not saying its your husand's case but there is ALS type disease called monomelic amyotrophy that is confined to one limb and AFAIK it does not progress. Also there is one more syndrome of that kind affecting just one limb but could not remember the name now.

 

[Gentleman Jim]

Re: confused

U go girl; That's what that sounds like to me. Listen, the wonderful people here, the smart
people here, will usually not give answers to these kind of questions. They would ask you
what your nero is telling you. What tests you have taken, and the results.

Most of the time, they pick up where the docs leave off. ALS is a beast, we all agree about
that. So, tell your story if you like, but include where you are going and where you have been.

I am experienced with ALS over the years, but not medically. You have come to the right place
to tell your story. Be specific. Those here don't like games of any kind. Compassion all day,
games with this beast, never.

Jim

 

[patricia1]

Re: confused

This a guestion for dr wright .I have no experience with that .My heart goes out to you and your husband

 

[yogagirl]

HI

I'm new here - my husband has lost all use of one arm. Dr's said it probably won't progress - maybe ALS - might progress! So confusing. It's been two years - now he thinks he's getting weaker in his other arm. I'm so scared.

Any information would be appreciated.

 

[yogagirl]

Re: confused

thanks for any advice. to be more specific - we have been to 3 neuro dr's - 2 said ALS - 1 said rare disease that affects one limb. It's been almost 2 years. Now my husband thinks he's getting weakness in his other arm. I'm so scared. His brother died of ALS 2 years ago.

I know this disease and it's scaring the wits out of me to think he has it. Any advice on diet, trials, etc. would be greatly appreciated.

Also, anyone have symptoms start after taking statin drugs. This is when my husbands symptoms started. Docs say this has nothing to do with it. Thank you so much

 

[yogagirl]

Re: confused

hi jim,

thanks for the advice. no games here. just scared. i

 

[notme]

Re: confused

The only thing definite with ALS is that nothing is definite. Progression is usually rapid, but not always. It usually starts with symptoms noticed in one arm or leg or, in bulbar, with speech/swallowing.

Umn symptoms only.can make diagnosis more difficult. What has the doctor said? Als is always progressive, even if that progression is slow as it is for some.

LMN is easier to diagnose, because the EMG won't be normal. So, it would help us help you with a little. Ore information.

That said, this is also true. It can only be ALS when it can't be anything else.

 

[notme]

HI

I'm new here - my husband has lost all use of one arm. Dr's said it probably won't progress - maybe ALS - might progress! So confusing. It's been two years - now he thinks he's getting weaker in his other arm. I'm so scared.

Any information would be appreciated.

Hi again.

First, it helps us here if you keep to one thread and give any additional information in that thread. It's hard for some of us to go read all other posts.

What tests have been done? What were the results of those tests? What symptoms is your husband having?

A badly damaged nerve in the neck (or several) can cause loss of use of an arm. Even s.eeping on an arm wrong can, believe it or not. Als is only given as the cause when all other possibilities have been ruled out. Symptoms of only ONE limb showing anything wrong by clinical and other means, would not be diagnosed as ALS. It can't. For an ALS diagnosis, several areas must be involved...even if that involvement is only noted on an EMG.

Does that help at all? Edit to add that it can take time for people to read and respond. Many are responding using one finger, a foot, or their eyes.

Please read through all the sticky posts, too. They can answer many questions. So your next post, please, give us more information, please.

 

[patricia1]

Has he had a cervical mri .

Pat

 

[Bliz]

yofarigl, discuss with your doctors monomelic amyotrophy as I have written before. It is confined to one limb and it stays like that. EMG of other regions should help as it should be clean in this case.

 

[yogagirl]

Thanks everyone for your patience. I'm obviously new here and getting used to how to post, etc.

My husband has been to 3 Neros. first 2 said ALS - last one said upper motor neuron disease that only affects one limb. It's been 2 years without other symptoms (just one arm totally useless). Now he seems to be having some weakness in other arm. He's having some trouble doing things he could do before - button shirts, put things in his pocket, etc.

He's had nerve conduction studies - normal results. Cervical MRI - Normal. Blood tests - Normal. As I'm sure all of you know - life has been hell for 2 years. Now I don't know what to do or think.

Are we missing something else?

 

[patricia1]

Now the waiting game begins.
Good luck and do and continue living your lives and don't dwell on als.Even if he has it .There is no cure or real treatment .
Start your bucket list .Thats what l did while waiting five years waiting for a diagnosed
Pat

 

[notme]

It's time to see the neuro again to have his other arm checked. Sometimes ALS progresses slowly...or as already said, it could be something that has only affected one arm. If the EMG is neg on the other arm, and it has UMN signs on exam, the doctor should be able to give you answers.

What 2 docs said ALS? What was that diagnosis based on officially? What criteria was met for the diagnosis by those two neuros? Or was it a rule out diagnosis?

If he is in fact showing confirmed by doc issues in his other arm, he can find out for sure and make decisions accordingly. There are treatments and clinical trials available if it is ALS. On the other hand, if it isn't, many other conditions have cures and treatment. None of us here can see his issues...all we can do is suggest he go back to the neuro with the new complaint.

 

[patricia1]

It's time to see the neuro again to have his other arm checked. Sometimes ALS progresses slowly...or as already said, it could be something that has only affected one arm. If the EMG is neg on the other arm, and it has UMN signs on exam, the doctor should be able to give you answers.

What 2 docs said ALS? What was that diagnosis based on officially? What criteria was met for the diagnosis by those two neuros? Or was it a rule out diagnosis?

If he is in fact showing confirmed by doc issues in his other arm, he can find out for sure and make decisions accordingly. There are treatments and clinical trials available if it is ALS. On the other hand, if it isn't, many other conditions have cures and treatment. None of us here can see his issues...all we can do is suggest he go back to the neuro with the new complaint.

Really!their are treatments for als.

What are they ?