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IASAD

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Lost a loved one
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Philadelphia
Hi, I have been reading up on ALS quite a bit since discovering that my husband's symptoms seem to match the disease. I wonder if any of you can shed some light on this because I'm very scared.

My husband is 45. Sometime this year he started becoming fatigued very easily and he had been complaining that he wasn't making any progress at the gym. He has always been very fit and all of a sudden he could only run half the distance he could before, he could only do half as many push ups, etc. We thought it was just him getting older.

Then he started getting muscle twitches. They're constant now, all over his body. I can't snuggle with him at night anymore because I can't get to sleep with all the twitching. He gets cramps as well, sometimes his hands will really cramp up for no reason and get stiff. He has become weak, especially in his upper body. If he holds his arms up for even 15 seconds, his arms and whole upper body start trembling and he can't keep them up. He also has hand tremors a lot of the time.

He has lost a lot of weight. He says he just isn't eating as much as usual but it seems to be coming off quickly without much change in diet. The latest symptom that started last week which concerns me the most is that now he can't take a breath from his chest. He can only breathe using his stomach. It's uncomfortable for him especially in bed at night. His chest just won't move. He said it's a little better when he's elevated.

Also, one shoulder is a little different from the other now. There's like an indentation there that wasn't there before.

He has been to the primary doctor and they ordered blood work which isn't back yet. I know it will be a while before he can get a neurologist appointment. I've told him my concerns but I think he doesn't want to think about ALS and I don't blame him.

If there's anything you can see in this thatisnt ALS related, please let me know...I need something to ease my mind because my anxiety is through the roof right now.

Thanks for reading.
 
He seems to have symptoms in a lot of different areas which is not the way ALS starts. However, clearly something is going on and he is approaching it correctly, seeing his pcp who is doing blood tests as a first step, and he is not jumping to a diagnosis that is rare. The blood tests may send you in a completely different direction

Trust your pcp to direct your husband in the right direction, whether it is to a neurologist or somewhere else. IF MND needs to be investigated you are fortunate to be in Baltimore. The neuromuscular doctors at Hopkins are superb diagnosticians

Let us know what happens
 
Thanks Nikki. I know we need to go through the process, but the waiting is difficult.

One other thing that's happening with him is it's hard for him to stand up straight. It doesn't hurt, just takes a lot of effort. Today he told me his shortness of breath is getting worse, but it seems a bit better when he's up and moving around during the day.

He did also develop a weird hump in his upper back a couple months ago. Chiro says it's tech neck and x rays looked fine but I'm starting to wonder if maybe a herniated disc can cause all these symptoms. Although he has no upper back pain, just pain in his lower back.
 
Hump back: not ALS
Pain in back: not ALS
Shortness of breath: not ALS onset

Regarding "unable to breathe using chest": I now _only_ breathe with chest; my diaphragm no longer works.
 
Thanks Greg. I know the back stuff isn't a symptom of ALS. I guess I'm hoping that it's something back related.

The thing that is a bit confusing is I keep reading that all ALS presents differently. So I was wondering if maybe his shoulders and chest muscles were the first to go, since it's hard for him to lift his arms and his chest won't move while breathing.
 
IASAD, you're right to say that ALS presents differently in some people. But our folks here on this website, like Nikki and Greg, are really familiar with different forms of the disease.

I agree with them that I don't see ALS in your posts. Lots of bad things, there, but nothing you wrote makes me think it's possibly ALS.

My advice is to avoid the chiropractor completely and stay close to your family MD. This is way, way, way far out of a chiropractor's field of competence.
 
Thanks Mike, that does help ease my mind a little. I guess we are in for months of testing now. I'm still concerned that it's ALS but trying to think otherwise because my anxiety certainly isn't helping any of us.

I'm so very sorry for everyone on here that is dealing with this horrible disease. And thank you all for helping those of us who are worried.
 
Please let us know what happens. His doctor should have some information early next week. If you don't hear give a call and make sure things keep moving forward. If the blood tests are normal they may not get to the doctor quickly. Some of the tests might take a while but most come back very fast.
 
I know what it is to fear for your husband, for the vast majority it turns out better than it did for us and from what I am hearing it will for you as well.

Your description of what is going on as others her have observed if far to body wide/systemic to be an ALS presentation from everything I have seen and heard. I think it would be highly unusual that ALS would begin in this way.

My one work of advice in finding out what is going on is PUSH, push hard to get the appointments and the testing done. Had I not pushed I think we would have waited months longer to get our Dx. Let the Dr's offices know you want earlier appointments if they become available. Ask lots of questions. Ask anything that pops into your head (some will disagree on that by the way, but I am very pro questions). Don't scare your husband to death by continuing with ALS talk, but just push to find out what is going on here.

Best wishes to you both, this has to be so hard.
 
Agreed, Baltimore, there are multiple neuros within good academic centers as well as multiple centers near you, e.g. UM, Hopkins, 2 in Philly. Whatever he has, it's quite possible that early treatment would work better than waiting.

Best,
Laurie
 
Thanks Lenore. It's nice to hear someone else say it's unlikely.

I also forgot to mention that he's former military...AND he got hit in the head back in his 20s and actually had a mild stroke from that. 2 more of the warning signs.

Also, he works overseas now and is gone for 3 months at a time so I'm concerned we won't get a neurologist appt before he leaves on Feb 2nd. :(
 
Thanks Laurie. I don't think my husband thinks ALS is a possibility. I mentioned it and he dismissed it and I don't want to scare him by bringing it up again. I hope he takes it all seriously enough to push for an quick appointment.
 
We are still waiting to talk to my husbands doctor and get a neurologist referral. Got the blood test results and from what we can tell everything looks normal there.

New symptoms that popped up this week: he said it's hard to talk loudly, that his voice seems quieter. Is this an als symptom? His swallowing Is fine. Also balance seems off.
 
I have not heard of a quieter voice as a symptom. I would not read much into anything, just wait to see the specialist and push for those answers.

It is hellish to fear for a spouse. Not even the time they had me ( wrongly, thank you God) almost diagnosed with Ovarian Cancer scared me as badly as the process of what I went through with Brian. I use to dread driving from place to place for work because I would start crying alone in the car. I have faith it's going to turn out better for you two.

Chin up, we are with you in spirit.
 
IASAD it is very important to get a referral to a neuromuscular disorder specialist i.e. neurologist specializing in neuromuscular disorders. Without the specialist it could take a very long time to diagnose him. Kennedy's Disease and Flail Arm ALS would likely be on the differential diagnosis list from reading your husband's symptoms and thinking back on members with similar symptoms. Best of luck and let us know how things go. I know how scared you probably are.
 
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