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JessHart

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Hey. I'm here with the same question as everyone else. Except this is about my sister. She is 29.

Last year she was diagnosed with compartment syndrome in her leg. She had some buckling and pain. Never fell, but had to give up running because of weakness.

Within the past 6 months she also began to have trouble with one arm. She has some pain and weakness, with a noticably weakened grip. She also has shoulder subluxation. THe weakness in her hand and arm seems to come and go, getting worse with more use.

She has been to all kinds of docs and is currently seeing a physical therapist who believes she may have damage to the nerves in her arm. They don't seem to be relating the leg weakness to the arm weakness which surprises me.

She has no reports of twitching which I realize from this forum is pretty common with ALS.

I guess I'm wondering if ALS can begin unilaterally and without twitching?

I haven't told her to look into ALS as a possibility and wonder if I should?

Thanks so much.
JH
 

Jamiet

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Look into charot marie tooth disease.
 

Sandy Loam

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Be careful here

Hi Jess,

I haven't told her to look into ALS as a possibility and wonder if I should?

Please let me preface everything that follows with the fact that I am not an expert.

However, in my humble opinion..................NO!

You obviously care for your sister, so why throw her life into a state of emotional turmoil greater than what she is already copping with today.

There is a very good reason why the following statement exist. "ALS three letters that will change your life forever"

If her condition is ALS, the notorious symptoms will begin to surface, it is strickly a matter of time. If it is ALS, the dye is already cast, so to speak and in that ALS is incurable, the only benefit she will have is an eventual Dx so that she can then start planning her life differently.

The emotional terror that accompanies those three (3) letters is simply not a reasonable trade off...........again in my humble opinion.

Out
Sandy
 

CindyM

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Hi Jess. I couldn't agree more. DO NOT TELL! First of all, you accomplish nothing accept adding her to the ranks of the fearful. It is not like she can start treatment and get better. So what's the rush? Let her docs sort this out. You might arm yourself with information in case your fears are confirmed, but no need to upset her amy more that she already probably is. Cindy
 

JessHart

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Thanks.

Thanks. And I agree with the idea that I should not mention it, EXCEPT... my sister is in her first year of grad school and will come out with 100K in debt. Plus she is stressed out and unhappy a lot of the time. If it is ALS, would she want to live her life differently for two whole years of it?

I guess I have to leave that up to God.
 

JessHart

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So...

So, does it sound like it could be ALS?
 

CindyM

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Somebody said on another thread, do not cross any bridges before you ge to them. (I think that was Sandy) Anyway, it is good advice. We have members her who have had ALS for 10 years or longer. And many of us have been trying to get DX's for a couple of years.

There are a lot of conditions that mimic ALS and the others are treatable. I beg you to sit tight. Regards, Cindy
 

JessHart

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Okay.

Thank you Cindy. I won't say anything to her.

I will try to put it out of my own mind. If you all here don't mind me asking, would you include her/us in your prayers? This has been a hard time as I know it has for so many people here.

Take care you all and good luck.
JH
 

ltr

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You and your sister will definitely be in our prayers. You sound like a great and supportive brother and I wish you were my brother! I hope your sister is a fighter and gets to the bottom of what is going on with her. I would hate to see her going untreated for a condition that is making her miserable, if it is treatable. Good luck.
 

JessHart

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Thanks again.

Hey ltr. Thank you. I cried quite a bit tonight about what my little sis (I'm her big sis,not her brother:) has been going through. And I guess a little about what the people here have gone through.

I have to say that knowing you are all around makes it easier to stay silent and to accept if this is her fate we will get through it and be stronger because of it.

I am amazed by the strength and caring of people here. I know ALS takes a terrible toll on the body but from what I can see, it grows the spirit in immeasurable ways.

Thank you again
Jess
 

ltr

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I don't know why I said brother.....of course you are a caring loving sis! :-D
 

Jeliota

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"I guess I'm wondering if ALS can begin unilaterally and without twitching?"

Quite frankly, that's the way it usually starts. But there are so many things that this could be other than ALS that what really needs to happen is a referral to a neurologist. There are things that mimic ALS that can be treated, but if you ignore them long enough they can cause permanent damage.

Don't even mention mention ALS. There's so many other things it could be (and probaby is) that there is not reason to get her fear up. Just tell her she needs to see a neuromuscular specialist so she can get better.
 

JessHart

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Thanks.

Hey Jeliota. Thanks for your advice. My sis has been to several neuros, orthos, and other specialist and they just have no clue what is going on. She keeps going to neuros who say it's muscular and orthos who say it's neuro. She has pretty much been abandoned by the docs at this point who believe she has compartment syndrome in her leg and thoracic outlet syndrome in her arm. It just seems strange, that's all. So I did a little research on my own (the evil internet) and thought it sounded like maybe ALS. But you are all right that there is no reason to trouble her with this, and also no reason to trouble myself with it. If her symptoms progress, she will be taken back up by the medical community and until then she will just deal with no diagnosis, no running, and an occasionally swollen/painful/weak arm. It's just the way it has to be. I don't want to know if she has ALS right now either, so I'm dropping it from my mind and handing it over to God. There is nothing else to be done.

But thank you again.
I will update you all if ever anything more happens.
 

CindyM

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Please do, Jess. I hope they find answers for her soon! Cindy
 

JessHart

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One more question...

Can ALS symptoms spontaneously resolve? I am asking because my sister no longer experiences foot drop since she gave up running.

Thanks.
 
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