Alpha-1 and MG
 

Hi all,

Not sure if I posted this before or not but I notice a lot of pulmonary questions and problems.

Have any of you been tested for Alpha-1 Antitrypsin Deficiency?

I have both the Alpha-1 and MG and COPD and Asthma. I am allergic to the inhalers so using them is something I rarely do {only until the tightness is so bad that I think of going to E.R.}

The Dr.s have a hard time telling what is the Alpha-1, Asthma or MG.

Sooo if any of you are having lung problems see if your Dr. will test you for the Alpha-1.

The treatment I get for the Alpha-1 is a weekly I.V. infusion {done at home} and well I have to say I have noticed a difference in my breathing {not great but better than it was} So please ask your pulmonologist about it, I mean it can't hurt and if that could be a part of the breathing problems than you can start getting help.

Ohh and just a note, my Dr. said I am the only patient he knows of that has both MG and Alpha-1 but he admits most pulmonologists don't test for it.

I wouldn't want any of you to have it but it would be nice to have company in this little world of mine :)

Hi Joan,

Sorry to hear that you have this deficiency to contend with too...

There was actually a time, a few months before I got the slurred/nasal speech, when I was having trouble breathing...I just couldn't get a deep breath, and would have to lean forward to get a full breath...This was episodic, but I generally felt like I couldn't breathe well...I kept going for xrays thinking that I had emphysema from smoking...I figured that if I had emphysema, I must have that Alpha-1 deficiency because of my age, but I never got around to asking the doc. if he could test me...He said that my lungs looked and sounded fine, so it might be asthma...He gave me puffers which kinda helped...

I now realize that it was prolly the MG, but I still wonder if I might have the begining stages of emphysema from smoking, just because I get so short of breath from doing barely anything, the smoking, and my hands are always swollen, especially if I 'exert' myself (which isn't really exertion at all :()...

Thanks for sharing this!

What are the symptoms you experience that are from emphysema?

P.S. I'm happy to hear that the infusions are helping! :)

:hug:

I will have to look into this Alpha thing. I have mostly Bulbar MG and Asthma -- usually can't tell WHICH is acting up. Albuterol does NOTHING for me. Advair -- zilch. Singulair works, but gives me a massive headache, insomnia, and makes me ill as a HORNET -- so, I don't take it very often. Primatene (inhaler and/or tablets) DOES the trick -- and since ephedrine has also been used to treat MG, I feel like it is a "win-win" situation. My GP and my Pulmo have both cleared me to use the Primatene as often as twice a week (which is usually more than enough).

I've had several "close calls" where I didn't think that I was going to be able to "grab" enough air to stay conscious, but, DID at the last second.

I'm not overweight (not underweight, either), but I cannot breathe AT ALL if I bend over or kneel down. I can't take deep breaths for my doc to listen to my lungs -- I had trouble holding my breath for my last mammogram (I started seeing "black" and thought I was going to pass out.)

I don't smoke -- I've always felt like there WAS something ELSE going on -- maybe THIS is a clue OR the answer.

Nicknerd you asked "What are the symptoms you experience that are from emphysema?"

I am lucky that I don't have full blown emphysema as yet. The infusions I recieve actually "hold off" lung damage {so my Dr says} and the only reason I was even tested for the Alpha-1 was because my lung Dr said he thought my breathing problems were MG related, it was my Neuro that tested for the Alpha-1.

I get the shortness of breath, tightness, dizzy when I feel I am not getting enough air. I used to walk a lot and ride my bike all the time but after inhaling the fire ext. fumes I am lucky if I can walk up and down my stairs 3 times.. LOL. The damage done to my lungs can't be reversed but the treatment helps prevent further damage.

With alpha-1 your liver doesn't produce a chemical {don't remember the name of it} that helps protect the lungs, the I.V. treatment helps with the lung protectant.

I still don't fully understand it all but as I said, the treatments seem to be helping a bit so I am just happy about that :)