I am new to the forum. MG symptoms began with double vision and ptosis in Jan 2017. Most testing for MG was negative except for the SFEMG (Positive for neuromuscular disorder). Started Mestinon, which initially helped. Generalized MG symptoms came on rapidly and I started 60mg/day Prednisone and Cellcept. I can't sleep! I feel wired but so weak and fatigued, I can't expend any energy to become tired enough to fall asleep at night. Help! What do others do to get more than a 2-4 nap during the day??

Welcome
I was hoping someone would answer. Anyway this was how I started out, just double vision. All antibody test were negative. My neuro-opto put me on a large dose of Prednisone which cleared me of double vision. They tested my antibodies a few months later and I was positive. This was all in 2007. They tapered me off prednisone. I now take 20mg a day. They tried Imuran but it reall made me sick so I then went on Cellcept. In between I had many doses of IVIG. There is so much they don't know about this disease. I am now fighting various cancers which they blame on the Cellcept. They are going to try something new in Jan.
As for your sleep problem I can't help you. I would guess when they start tapering your Prednison that will go away. I wish you the very best.
Mike

Thanks, Mike. I'm trying Melatonin. It works some nights. Not so well on others. Since I don't have to get up early to go to work anymore, I guess it doesn't matter. I am worried about not getting enough restorative sleep.

It's way too soon to even think about tapering down on the prednisone. I started Prednisonenand Cellcept in November. Quite frankly, neither have given me any relief and my MG symptoms have gotten worse. Hopefully, this just takes more time. How long were you on Cellcept before experiencing secondary cancers? What kind of cancer? I had read Cellcept was supposed to be so much safer then the alternative immunosuppression meds avaiable to us.

Cellcept takes 6-8 months to start working. Mestinon never did much for me. I still take it. Keep in mind these drugs affect each of us differently thus "snowflake disease".
I had to go to Cellcept because Imuran made me so sick.
I was on Cellcept about 5 years before the cancers started. I had lung and skin cancers. Lung cancer is gone. Just finished radiation for 5 skin cancers. I have had about 15 skin cancers. I had a squam on my head that was removed by cutting out. The hole was about the size of a silver dollar. It upset my MG so bad I was in Hosp for 8 days. My MG responds very bad to body invasion. Also keep in mind a lot of deadning drugs Drs like to use upsets MG. This includes dentist.
As for sleep. I have good nights and bad nights. Take a nap mid-day because I really tire out in about 3-4 hours.
Mike

Try taking the prednisone in the morning. I had trouble sleeping when I was diagnosed about 20 years ago and taking 100mg of prednisone. You will also feel worse before feeling better. FYI, I'm now on 3mg of prednisone, trying to come off it all. If the melatonin doesn't work try Lunesta. Jim

Hi, Barbi-girl! Welcome.

I posted this over on Ron's post.

That's a fairly high dose of steroids. I doubt that it's too soon to think about tapering Pred. Who is monitoring the steroids for you? You may need something like IVIG in the meantime, as Mike did. These days, MG experts try to use steroids only during an exacerbation. The long-term side effects and inability to withdraw from the drug make it a difficult drug at best. Sure, it can really help AIs, but I've known so many people who wish they'd never taken it.

Do you have a pulmonologist? They work in tandem with neuros in a hospital setting. They could at least assess the pulmonary portion of your MG to monitor your progress. Neuros can't do that!

Massaging muscles can also help. Why? That has the same effect as exercise without actually exercising. But doing that could make you weaker as well. Worth a try!

I hope you can find relief too!

Annie

Annie..today was a better day. I’ve had a PFTbstudy on Monday and it did show diaphragm and abdominal muscle weakness with no lung disease. The Pulmonary Tech said my results were not too bad for early MG. I was using a cane and collapsed in the hallway on my way out of the study room because of leg weakness. It was performed at a University hospital. The most they did was get me into a wheelchair so that my husband could get me into a car to bring home! Honestly, there are no good hospitals where I live.

My problem is that both my original Neuro Opthamologist and now my new Neuromuscular specialist have doubts whether I truly have MG. They have both documented this in their clinical notes. The reason....only my SFEMG was positive. Repeated Acetylcholine Receptor antibody tests and Musk antibody tests were negative. My EMG was also normal. At each office visit, my Neuromuscular exams are not bad enough for them to make the diagnosis. Nonetheless, they started me on Mestinon, progressed to Prednisone and Cellcept and are now trying to get insurance approval for IVIG. in the meantime, I deteriorate. That’s why I’m seeking another opinion.

Tomorrow is my big day seeing Dr. Kaminski. Have you heard of him? I’ve researched him and it appears he’s an MG expert. I need someone with experience who can confidently diagnose and treat me.

Do you have copies of your PFTs? If not, get them. They might not know your "normal" numbers and could have thought the ones they saw were "ok." I wish they would have done an arterial blood gas. Did they do your O2? Most techs don't save all of the MIP and MEP numbers. But in MG, having all of them is important, due to how we become weaker the more we do. If someone is stable, the numbers might be the same. If not, they'll be worse with each attempt.

I haven't seen Kaminski, but he does have a good reputation. However, many neuros tend to have massive egos. I hope he will be kind to you and respect the evidence.

The problem is that you are on drugs that suppress the immune system. That means the tests for MG might be normal now. Kaminski would probably view the SFEMG as more important that antibody tests, though they are both important evidence. Antibody production varies, and the severity of MG is not necessarily reflected by how high an antibody level is. There are other antibodies in MG, such as LRP4.

If he wants to redo the SFEMG, the test might be normal due to being on immunosuppressants. There are some people who are so bad, though, that they test positive even while on them.

MG is a clinical diagnosis that is backed up with tests. A thorough neurological exam is very important. The N-O and neuro you saw might not have been confident enough in diagnosing MG to realize that there are many presentations of this stupid disease. Some people can be very weak and test negative, while others can look fine and test positive.

If you can have a plan for "whatever it is" you have (sarcasm), any hospital can follow that. A good diagnosis is essential, but having a plan to treat a disease is more so. Kaminski can do that. A diagnostic letter is also a great thing to have from an expert.

I have no idea if you have MG. But the fact that you become weaker the more you do is indicative of myasthenia. What is concerning is that you aren't better on steroids yet. Please be careful of any withdrawal plan. After being on steroids for more than a few weeks, the adrenal glands tend to not work any longer due to the steroids doing that job for them! Withdrawal should be done slowly, or a person can have an adrenal crisis. That alone can tank MG.

That's probably more than you wanted to know, but there really is so much to know about MG. And having that knowledge helps during any doctor appointments, having tests, or managing the disease. I really hope that Kaminski can figure all of this out for you!


Annie

Dr. Kaminski exceeded my expectations! I am so fortunate to have seen him today and must surely have a guardian angel who made this happen. He is brilliant, humble, professional and really listened to my “story” before reviewing medical records and test results. He said with 100% confidence that I have Myasthenia Gravis, no doubts whatsoever. He acknowledged that most Neurologists are very hesitant to declare a diagnosis simply because they don’t see enough of,these rare disease patients. They tend to only be confident if the Patients are seropositive, which I am not. He told me he sees MG patients exclusively and 10%nof his patient population are seronegative.

He ordered a tapering if the prednisone to begin immediately. In addition, wants to do 6 months of IVIG infusions while giving the Cellcept time to kick in. He identified other contributing factors and consequences of the prednisone which need to be evaluated - will enlist my primary care to assist here. He talked with me at length about what to expect in terms of the long haul of this disease, how the first year is the hardest.

What he gave me was hope! I cannot say this enough to all MG (or,possible MG),patients...if you have a bad feeling about your current doctors or treatment, seek out the best. Don’t let distance or money be an obstacle. This is your life and you only have one chance with it. I think Dr. Kaminski may have given me back mine.

Oh...he will be sending communications to my local Neurologists because he recognizes I’ll need someone local to execute his treatment recommendations. Ill see him again in 3 months and have a way to contact him, if needed.

Today, was a GOOD day.

Whopee!!!!!!!!!!!!! I am so happy for you. Well written!!!
Best to you
Mike