Status
Not open for further replies.

ama672

Active member
Joined
May 29, 2009
Messages
39
Reason
Other
Country
US
State
IL
City
Evanston
Hi forum,

After 7 weeks of progressive symptoms and four neurologists and two internists attributing my symptoms to a bulging disc/pinch nerve, I was told by my neuromuscular specialist (he also originally thought I had a pinch nerve), that I have ALS. The EMG detected abnormalities in my shoulder, triceps, forearm, and neck.

Right now, I have the following symptoms and would like some advice as to how to go about accepting/living life. I don't want to live anymore and am looking for a quick way out. My family is still in denial mode right now and my mom has not talked in the past 20hours as she has "lost it." I'm only 26, so I don't know if my symptoms will progress slow or not.

My current symptoms/conditions include: left arm weakness, shoulder weakness, sore muscles, twitching, cramping, left hand atrophy, shortness of breath, balance issues, and raspy voice.
 
AMA672, I wish I could give you quick answers, but unfortunately I cannot. But please do not feel alone. We have been going through the same thing you are for the past year with my husband (who is 39). He has most of the same symptoms as yourself, but instead of shortness of breath, he has slurred speech. It sounds like he may have had a stroke. Unfotunately there is not a lot of research on young patients, as we are finding out. But they do say that it is a slower progression in younger patients. I wish I had something to say that could make you and your family "all better." But please hang in there.

I feel like I am not being much help to you, but I felt a pull to write you back. I just signed up on this forum myself about 5 minutes ago, looking for that same support. I think being able to talk to other people that are going through the same thing, and REALLY understand how you feel is something anyone dealing with this needs. Sending you my prayers.
 
Thanks. I'm numb right now. For the last 12 hours, I've been sitting in my bed and staring at the window.

I am I gonna live like this going forward.....
 
Hi AMA672,
I'm sorry to hear that you too have this diagnosis and yes, you will "live going forward." There is a lot of living to do with or without this disease or any other disease. You are young, but for encouragement I'd like to tell you that we know someone who was diagnosed younger than you and is now in his 40's and still going. He has been living and so will you.

Hang in there! Come back to the forum to keep us posted on how you are doing and for great advice from the folks here. They truly helped us through the last two years and they will help you too.

Take care.
Pam B in Va
 
If you haven't been seen by an ALS specialist then you need to to see one, I recommend the MDA clinic. In a earlier thread you said your EMG was normal, is this now a different location?
 
hi, I don't post much anymore, I am still in limboland, have had all tests done and the only thing that shows so far is that I did have Lyme at one point, but my Gp and my rheumy disagree as to wether or not it is chronic Lyme. I live in Indiana, but I went to Illinois for most of my testing. I see you are from Illinois. Where did you have your Emg done? It seems like quite a leap from 2 clean emg's and a pinched nerve one week to having als the next. Did you see an als specialist? As you probably know it is quite unusual do have clean emgs and have als. If you have not been to an als specialist, I suggest you do so. What I fear is that if you are not completely sure you will scare other members on this site into thinking they have als and the Emg is basically useless. Did they diagnose you with another Emg or clinically? I myself had figured after being cleared by emg that I am alright for now , so I have decided just to sit it out and wait and see. Hope you will take others advice and see an Als specialist, even if you feel you have to go out of state to do so. Wishing you the best, Margaret
 
Ama672,
What made him change his mind? I have seen your recent posts, and I thought the doc said that due to no abnormalities in biceps and other areas, he would not say ALS.
 
You know what, I just read over all of your posts and when you initially came on here, you said you had right arm weakness and then in another post, that changed to left arm weakness. You also said you had no UMN symptoms. Then you had a clean EMG and then you got another one in a matter of 2 weeks and it was dirty. You then go on to say that the last neuro you saw said you had a pinched nerve after that neuro did your EMG and said you don't have ALS. Now a week later you say that same neuro is telling you that you do have ALS. On top of all of that, you say your EMG was abnormal in one limb. You cannot be diagnosed with ALS when only one limb shows signs and symptoms and you cannot be diagnosed with ALS without UMN symptoms. I'm sure I'm not the only one on here that is having a hard time believing what you're saying.
 
ama672,

Please see an ALS specialist, like Wright said you can't be diagnosed with ALS just with abnormalities in one limb.
 
...and just 7 weeks of progression.

These Dr's are QUACKS if this is truly what has happened!
 
taken for a ride

Wright: good catch on the right arm vs left arm thing. It was right arm until the 4th post! I'm amazed you can hold your temper; if ever there was a case where it was justified, this is it. I'm actually losing mine, so I'll sign off...

-Tom
 
You can't be serious. Now its FOUR neuros? Since when? A few days ago it was two. You saw two more neuros in the space of....I don't know...3 days?

Gosh I hate to write this but I feel like you are a fraud. God forgive me if I am wrong, and am being nasty to someone genuinely ill....BUT I DON'T BELIEVE YOU.

Lydia
 
You know, some of the "worried people" who come on here are truly emotionally disturbed, I think. I agree that these posts seem deliberatly manipulative ... esp. the talk of suicide (don't want to live anymore and am looking for a quick way out) ... but I always feel any talk of suicide should be treated gingerly, no matter how screwy the context or confused and contradictory the ranting.

I think we all should step back from this, and stop arguing with the poster.

Ama, please get some counseling. Talk to somebody: psychologist, family counselor, clergyman, social worker, physician. You need help.
 
This does seem too fast. I think if this is real, you need to see an als specialist. There can be emg abnormality with myopthy and mg, and many others.
 
I wish this was all a dream. I'm scheduled to go to Johns Hopkins in a couple of weeks and meet with a couple of ALS specialists. The neuro diagnosed me when my right and left arm showed abnormalities. He never tested my right arm initially (2 weeks ago) but when I went back 2 days ago and told him about the progression of my symptoms, he tested all four limbs.

When you meet with 4 neuros and all of them tell you don't worry about it and then you get diagnosed, anyone would get paranoid.

How do I function again? How do I go back to work?

I can't live like this. I was already an anxious person to begin with and now this.
 
Status
Not open for further replies.
Back
Top