Concerned

[Jaxx1]

I'm sorry for making another thread but everything is going downhill quickly. The phlegm in my throat is constantly there and I'm always trying to clear my throat but can't and something I haven't mentioned because I didn't think it was related was I'm really short of breath all the time it's way worse when trying to sleep at night I awake a lot through the night and I usually have to sleep on my sides I wake up gasping when I'm on my back. I'm having constant localized twitching in both shoulders also and it's getting harder to lift things.

 

[gooseberry]

Jaxx, Have you been to a doctor? I would start with my primary care doc. This time of year, and the crazy weather, things are budding, mold is growing....it may be allergies. Anxiety,panic, stress can make you short of breath...so can sleep apnea . Have you had a sleep study? As for your twitching, are you lifting or koving things? Are you properly hydrated?? They can cause twitching just a lack of restful sleep can. ALS is the zebra in a herd of horses. You need to see the probable not the extremely rare possible.

 

[affected]

Jaxx hon your last thread was closed because we could not help you further.

Only a doctor can work with you now, please do that. I am so sorry you are in such a state, truly. We are stretched to our limit supporting those who are terminally ill.

 

[help1127]

Jaxx1,

You posted one my question so I will reply to you the best I can going through tests for 3 years now. I have a lot of the same symptoms, I suggest go a neuromuscular doctor and get checked out. As for your breathing see a pulmonologist. I hope you can find peace. Don't be scared just work with your doctor. That's what I'm doing. I been twitching feeling fatigue, shortness of breath for over 3 years and I don't have ALS.

 

[Atsugi]

Mod note: Help1127, you have disobeyed several rules by posting outside the Do I Have ALS subforum and now you're giving health advice This is not a general health forum for people who do not have ALS.

I appreciate your enthusiasm, but I'm banning you for 7 days for several instances of violating important rules.

 

[Jaxx1]

Quick question why do many pals have low vitamin d levels? I find that kinda odd mine have been in the low range also and it's the only thing to be out of range on my lab work. Does this happen to most or all pals?

 

[Nikki J]

Low vitamin d is common period. PALS may get outside less so get less sunshine but ask any primary care doctor, lots of people are d deficient.

 

[Jaxx1]

Gotcha thank you Nikki

 

[KimT]

JAXX1,

I had been taking Vitamin D for years before onset because I have a family history of colon cancer. My brother had colon cancer and he has high normal Vitamin D without a supplement plus he never goes in the sun because he has Lupus. I wouldn't concern myself with Vitamin D being a factor. If your level is low, just start taking it according to your doctor's orders.

I know how stress makes you believe you have all these symptoms and, in fact, stress creates symptoms.

If I were you I would try to busy myself with other things, enjoy life, be around people, and put this forum out of your mind.

Kim

 

[Jaxx1]

Would it be wise to go ahead and see a ALS specialist? Because I don't really see how my symptoms aren't als symptoms I get cramps everyday in my legs and my neck is still fatigued and my arms still get very exhausted doing the smallest things and the twitching just won't let up

 

[Atsugi]

Would it be wise to go ahead and see a ALS specialist? Because I don't really see how my symptoms aren't als symptoms I get cramps everyday in my legs and my neck is still fatigued and my arms still get very exhausted doing the smallest things and the twitching just won't let up

No. Seeing an ALS specialist would be a bad thing. You see, the ALS specialist knows MNDs, but cannot be expected to have a lot of experience with the other ~999 things that might be the problem. You've wasted plenty of time, already, but not seeing doctors. It would be a shame to waste time seeing a super-specialist of the wrong variety.

The type of doctor who is trained and experienced to lead a proper health investigation is commonly called a GP. (That's a misnomer, though. There are hardly any true GPs left.) These are the MDs who are called Family Physicians or Internal Medicine. See a board-certified MD in one of those professions.

The wisest thing you said was "I don't really see how my symptoms aren't ALS..." You are absolutely right--you don't see. You're not trained to see. Rely on the proper doctor.

 

[Jaxx1]

That's just the thing I've seen my internal medicine physician numerous times he doesn't have a clue

 

[Atsugi]

That's just the thing I've seen my internal medicine physician numerous times he doesn't have a clue

See a different one.

 

[affected]

Jaxx hon, truly you have to just get to your doctor and work with your doctor.
We have given our opinions many times now, we just can't say anything more.

You don't present with ALS symptoms, but something is going on, so back to the doctor. If you don't trust your doctor, get another one. I just can't see that we have anything more to tell or offer you, but to wish you the best with your doctor helping you.

 

[KimT]

Jaxx,

Please listen to what everyone here is telling you. If I thought for one minute there was an outside chance that you had ALS or anything like ALS, I would tell you. You do not. That is good.

If you need to find another Internal medicine doctor (primary care) please work on that. He or she will help you with whatever is wrong and your anxiety.

Kim