Last nite my breathing got crappy...I couldn't sleep at all. Turn out this time they think it is mostly my asthma (of course complicated by my muscle weakness, so they sent me home after a special "neb cocktail" and whacking on my back.

Once again my potassium was low...I'm not sure how low, but in addition to 20MeQ there they sent me home taking 20 MeQ twice a day. They also wanted my to swallow 2 huge musinex tablets..I just laughed and said I'd get it in a liquid form.

Oh Eeyore, Im so sorry you had to go back to hospital

I know just how horrible hospital visits are

Hope things start improving for you, its about time!! although MG just doesn't seem to give us a break, does it, its especially frustrating that any sign of stress just makes it worse(this is about how I feel at the moment, if I had the strength to do it!!)

take care
redtail

I'm so sorry to hear you're not feeling well.......This darn disease just doesn't seem to be cutting you any slackI wish there was something I could do or say to help you feel better, but know that I think of you DAILY and keep you in my thoughts and prayers.......My potassium levels are low,too, though I can't figure out why - it has to be MG related(? ).....Any thoughts? You mentioned you are in the medical field - what do you do? I don't know how the geniuses expect you to swallow ANYTHING, let alone "horse pills" as I like to call them......I take my meds with baby bananas or pudding, though I don't think that would work for you. I still have soft palette issues, so taking ANYTHING with liquid simply isn't any option for me........ We HAVE to find you someone competant to take care of you, cuz' I really worry about you........How many more days till' Hopkins? Try to hang in there, and know that you can reach me ANYTIME if you need me. As for me, I'm still hoping that I won't need the IV IG, though it may help. If I wasn't such a big baby and afraid of needles, I'd be in the hospital right now having my PICC line put in, cuz' for me the IV IG is like mother's milk. I think the worst part is the uncertainty of this disease - one day we're up and the next we're flat on our backs - well actually we CAN"T be flat on our backs, cuz' we can't breathe, but you know what I mean.....Hang in there

Hi Erinhermes
Low potassium is one of the multiple side effects of prednisone…
Maurice.

Thanks for your support. I had to go to the ED again this am b/c my stupid G-J tube (which was just replaced Wed) pulled out--they go it back into the 1st part of the small intestine (just outside the stomach, but not far enough to prevent the reflux which triggers my asthma and respiratory muscles issues....and so the vicious cycle continues.

3 days until Hopkins.. me and my doctors are putting alot of aith in them coming up with something, but it the back of my mind I know there is not much they can do and nothing that helps quickly.


I'm embarrassed to admit it, but I am a physician--Nuclear Medicine which is part of Radiology (which means I don't know muchabout neuroimmunology, but I'm expected to anyway). I'm mainly do cancer research at the NCI investigating new "molecular imaging agents". We inject small amount of a drug with a radiolabel targeting to a cancer and imaging the distribution...the most well know is FDG PET scans--we as do bone scans, heart and kidney scans routinely. We get to image the metabolic processes going on in the organ--it is also called functional imaging.

So I guess I should be more calm and rationale about all of this...I understand that this is a complex problem and nobody has the time to make sure that what 1 doctor does doesn't screw up what the other is doing and because I'm inn the medical field I'm expected to pick up the slack. Unfortunately no "priority" treatments and most of the times I get asked what specifically do I want them to do for me.

At the same time they seem to think that I will know when things are getting worse..which I guess it true to some extent..when I was I resident I would not have let someone with an acute asthma exacerbation go home with a peak flow of 250, when it should be 450, but as long as it stays there and doesn't get worse, it is there is not much to do except rest, and used nebulizer treatments...which I can certainly do better at home (with less stress). It seems that unless I am bordering on being intubated (which fortunately, aside from surgery I've never needed), I don't need to go to the hospital.

My GI doc actually said that it was good that I probably have MG b/c then they could put me on Mestinon and things would get better...I had to burst his bubble and tell him that I'd been on Mestinon for 4+ years and things were still getting worse.

The good (and bad) thing is that I can read and somewhat understand the neuroimmuno literature enough to know that some pts response well to treatment and for those who don't, there is no real consencous on what to do. Not many neuros know what to do past Mestionon and steriods . I can understand relectance to put me on any hard core immunosuppressant with my breathing and aspirating issues and I'd rather wait for someone who is comfortable making that decision than work with someone who is hestitant and unsure; although having to wait 3.5 weeks to see someone (with 3 interveneing hospitalizations and 2 ED visits) is a bit absurd..but that is what our health care system is coming to ...from what I've been told in Canada it is worse, and in other places there are no options.

Sorry to go on with this--sometimes I feel like an intruder here b/c I'm supposed to understand what is going on...but I don't

Hi Eeyore,

Please don't feel like an intruder!! I think it's a great place for EVERYONE to come, no matter what, in fact a friend asked me if I had given my neuro the web address, to see how all us MGer's fair!!

Do you mind me asking, are you on any med's besides mestinon? I've done a quick search, but can't find any reference to it if you are.
Wow your job sounds interesting, how are you going with it at the moment? MG and work for me at the moment is just not happening, still in the future there is hope.

Hope you get some answers at Hopkins
thinking of you
take care
redtail

Oh my dear, there is SO much more than Mestinon and Prednisone. Not a doctor, but an MGer of 27 years. The type neuros call "refractory".

There is Imuran, CellCept, Cyclosporine and Tacrolimus, transplant drugs that are now being used "steroid sparing drugs".

The cancer drugs Cytoxan, Methotrexate and Rituxan are also being used. Sometimes as a combo with other immunos.

Interveneous Immunoglobulin (IVIg) has been a life saver for a LOT of us and there is always plasmapheresis; in which you get your plasma removed and replaced with albumin and saline.

Glad to read you're going to Hopkins. Don't give up hope yet, there are lots and lots meds to try, in a various mixes.

I finally found a great mix after 22 years of lots of treatment failures. I've done ALL the above listed with the exception of Tacrolimus.

Imuran, Methotrexate and biweekly IVIG are my life saving mix.
I hope you get your answers soon and find yours.


Best wishes,
Ro

Hi Eeyore,
I found some interesting information about MG treatments in the following link:
http://neuromuscular.wustl.edu/mtime/mgrx.html
I hope this would help…
Maurice.

Thanks for your help and continued support.
Neutro--that's a great web site!

So far I've only been on IVIG (now every 3 weeks) and Mestinon. Staring the IVIG was a livesaver 4 years ago---I was on home O2 and my neuro at that time said there was nothing he could do---the IVIG got me alot better..I was on q 4 weeks for a year and then switched to q 3 wks...which had kept me stable for a while-

As for work..I'm trying to keep up, but not doing well. Right now there is alot I can do from home as we are just starting up a few protocols--Tues I have to go in b/c we have a patient and I'm currently the only one on our team authorized to give the radiotracer. I keep trying to put things into perspective--our patient has recurrent metastatic breast cancer and is hoping to make it through the next year...I just feel like ****.

I really hope there is something Hopkins can do, but I also feel there are people out there who need more help than me. Only 2 more days...I'll be real bummed if they are no help

Hi Eeyore,

Right at the moment I think you are one of the people who needs help and support. Yes it is awful that there are people out there with other diseases, but what you are going through isn't any easier, I think anyway.
Take care and keep us updated with your visis to Hopkins
take care
redtail