Oh, this sounds so frustrating! I spent time in the ER with my dad thinking he was having a stroke and left with no diagnosis but to see an ENT - who was actually the one who agreed that a neuro consult was needed. Have you been on IVIg or plasmapheresis? My dad is 75 and was diagnosed this summer and still is having trouble getting on top of things. I've heard from others that the first several months can be very difficult with getting the right medication for you. I'm sorry you are still having so much fatigue and am eager to hear what others here have experienced.

Sorry to hear you are having a difficult time with mg . It takes time but it does get better. I was diagnosed 2 years ago at the age of 50. Started with double vision trouble swallowing, trouble speaking , a lot of fatigue. I just started back to work progressevly and my employer is very accomadating . I have just lowered my prednisone to 20 mg daily with only 60 mg of mestinon also 200 mg of imuran daily. The biggest obstacle would be the fatigue , and now I am diabetic because of the medications. Get a lot of rest naps during the day and have patience, it's a new way of life...good luck, mark

Thanks for the input. I see my Neurologist again on 12/5 and will beg for more aggressive treatment. The breathing issues are the most concerning. I just now called the Pulmonologist's office saying 7 days of Brio has done nothing to help me. I stayed in bed most of the day yesterday. I just want some relief. Hearing from others that it can take time to find the right treatment does offer hope.

Barbie, you are just beginning the journey and it is tough, but do-able. I was diagnosed at 61 and was forced to retire and apply for disability. I got it months later. I have been suffering with MG for a year now and I am on 60mg of Mestinon 4 times a day with 1mg of glycopyrrolate to ease the side effects. My celcept (mycophenolate) is 4 500 mg tablets twice a day and 20 mg of prednisone once daily. The prednisone messes with my diabetes. What really got me over the 5 different Crises I had was plazmapharsis. They performed it 38 times and that is when I started to get better. I was on 120mg of mestinon 4 times a day but now that is in half. I am hoping to get on a lower dose of the celcept soon. This journey is different for each of us and our other aliments will have to be taken into account. I also suffer COPD so I sleep with a mask forcing air into my lungs and that helps with the breathing. I do 4 breathing treatments a day of Albuterol Sulfate and that makes breathing easier. Don't get me wrong, I still can't breathe well and if I walk some I am winded. I just now am getting where I can go grocery shopping once in a while and walk the store some, but I do have to stop and rest. (I refuse to use the motorized carts). I have had 6 neurologists and each one offered something but the two I have now are the best. They are well educated in MG and I am finding that that is the case for most of us. Just because they have a degree in neurology doesn't make them well educated in MG. I am happy with my progress so far and I know that first thing in the morning is tough, but it gets easier after my shower. Then in the afternoon I have to rest some so I can keep going later in the day. Rest is a key factor. My wife is semi bedridden and I have to care for her too. I do have the help of a nurse for her three days a week, but the housework, cooking and cleaning is all on me and it is able to happen well, as long as you respect the illness and it's rest requirements. Best of luck to ya

Goodness sakes! Each of our journeys are unique but the similarities are quite noticeable. You're feeling quite like I did when I started. Only since May have I had an "official" diagnosis. Sero negative and confirmed with SFEMG. I take Cellcept, 2-500mg/twice a day. Prednisone, 60 mg a day. Mestinon, 240 mg/four times a day. Etc. etc. etc. And they keep adjusting. I am also on IVIG every 3 weeks. The issue is, it is still getting worse. Since stress is a trigger, and not feeling good is stressful... well, you get it....
Even with all of this, we are not alone. Just having knowledge that we are still here, still getting by, and still sharing support can get through the humps.
The additional things that keep coming up are a nuisance, as well. For me it is RA and Sjowgrens and Lupus.
Patience is all we have to hold it together. Often, that is in very short supply.
The best advice I have been given is to accept myself as a "spoonie". This means, each day that I begin, I have only so many spoons of strength to get me through the day. Each spoon spent is no longer available for that day. Where do I want to spend my spoons? Stress is costly so i have had to revisit that many times. Moving too much is a killer. After all is said and done, I have to accept that I have new limits. Difficult as it is, acceptance of oneself is the key.
Prayers, hugs, and all the strength you can muster....

The sharing of experiences is so helpful! My pulmonologist started me on Albuterol inhalers, continuation of the Brio and Zithromicin, just in case it's an infection. He wants to see if this will help. Otherwise, he fears the Cellcept is causing the coughing and I'd have to stop. Fingers crossed this works!

I love the spoon analogy because it fits! I have to pace what I do around the house. I'm pokey and worn out by 1pm. Not a whole lot gets done but my husband is a gem and doesn't mind things are not as organized and clean as they used to be.

What saddens me is the lack of socialization. My workplace satisfied this craving to be with people and converse. Now, I can't even talk but no one calls anyway. Friends (and family) don't understand the disease so they shied away. This forum may be my only outlet.

Saw my Neuro Opthamalogist yesterday. Couldn't walk unassisted and was falling against the walls. Having swallowing issues, extreme fatigue and occasional double vision. The Coughing and breathing issues are about the same...bad. He wants the Pulmonologist to weigh in on the root cause and treatment. He was not convinced breathing issues are MG related. I don't know, only that I need some relief. I am unable to talk without breathing issues. I can't leave my house alone and don't even attempt to bathe or shower unless my husband is there to assist. I am using a cane now but contemplating getting a walker to assist around the house. I am somewhat embarrassed to get one.

I am scheduled for a barium swallow test and pulmonary function studies in Early January. I have a Neuro Muscular Neurology consult at a university medical center (VCU) scheduled for early January as well, and the current Neuro is anxious for another opinion on best treatment. He doubled my Cellcept to 1000mg, 2x per day. I pray it helps.

Does it get better or can it get worse? I went downhill so fast it scared me.9

Ok, wanted to give all you MG patients a good laugh. A well meaning relative advised that going on a Paleo diet is all I need for a cure. Says he knows a 20 something year old who altered her diet and is symptom free now for many years. Should I notify The MG society, Duke, Johns Hopkins, UVA, etc., so they can stop all of the studies and clinical research projects because they are wasting time andmoney when the cure is so simple?? Please tell me your own well meaning advices received from people with no clue.