Hi,

So you feel prednisone is helping you probably the best? I have only been on 30mg. a day but I had good improvement but now the neuro is backing me off to 30mg. every other day. I am not doing so well. I have to call him today to let him know how I am doing. I am discouraged because I am not functioning nearly as well. Seems like 30mg. is a low dose but my face was beginning to get puffy. I am concerned about that too. IVIG is not an option for me.
I am taking Savella for Fibromyalgia and Trazadone at night to sleep. I am on 2 medications for my Hypothyroid condition too. You mention you live in Maine. I was born there and lived there until getting married and moved to N.H. and now live in Ma. in my second life. I have a son who still lives in Maine and most of my family is there in Farmington. My other son lives here in Ma. and they both have their own families. Where are you? If you don't mind telling me. We are going up in August for vacation to Freeport.
Anyway, get back to me if you can. I really appreciate all your help.
Blondieslp

Hi Rachel,
Thanks for contacting me. I really appreciate it. The cold has affected me greatly too over the years but with hypothyroidism that has made it worse. It was just suggested yesterday that I start taking Folic Acid so will get some of that. I am already taking the other vitamins you mention. Can I ask, which medications you take for the MG and what works best for you? Are you just on Mestinon. That alone would not be enough. I really started to feel better with the Prednisone but my face was starting to get puffy. Now he is cutting me back to 30mg. every other day. Again, any suggestions or help is so welcomed. Have a good day. Blondieslp

Hi Abby,

I was tested a few times too. I wish something concrete would show up but I know how I feel. For a while, I really tried to convince myself it was in my head because I thought maybe that the Neuro thought it could be but I KNOW it is not. The EMG I had was a waste of time and money because they didn't test the muscles where I feel the most weakness. But I trusted that the docs etc. knew what they were doing. IVIG would not be an option because I do not want any type of blood product from someone else. And I understand that its only a temporary help. I am curious about the Imuran. Did you try Prednisone or is the Imuran a better choice? Will wait to hear from you. Thanks so much again, Hope you have a good day.
Blondieslp

Hi Cate,

What is refractory MG? Just vision? I had 2 episodes of double vision several years ago but it was chocked up to medication I was taking for fibromyalgia. I am also hypothyroid and take a few medications for each of these problems. I also have Fuchs Dystrophy which is a rare eye disorder which eventually could mean a corneal transplant and Plantar Fascitis which makes it difficult to be on my feet for long periods of time. Now with MG it has really crippled my lifestyle. I have always been an active person and still trying to stay that way as much as possible but some days I just can't seem to function.
Do you feel the Imuran is the best medication for MG? I really appreciate all your help. I hope you have a good day. Thanks, blondieslp

Blondie,

I'm only taking Mestinon right now, I was started on 30mg 3x daily and then increased to 60mg 4x daily. It seems to be working pretty well. My neuro wants to hold off on steroids as long as possible. I'm all for that! I wasn't tested for MuSk, my insurance company denied the request, they felt there wasn't any clinical reason at the time. My neuro dx'd me based on symptoms and some improvement from Mestinon. I also have a B12 absorption problem which caused a host of their own neurological issues and might have caused MG to rear it's ugly head!

Have a good one!
Rachel

Boy, is that ever familiar! Until I actually got a firm diagnosis, I can't tell you how many times I found myself thinking, "Maybe I'm exaggerating this...maybe it's all in my head..." Then I would have some severe episode and end up on the floor, and realize I was undeniably sick. Then I would get a little better and start doubting myself again. MG does that to your head, especially since (with me, anyway) it's such an off-and-on thing.

Yes, that's exactly what I thought with my first two single-fiber EMGs. They tested my arms and legs, when my biggest weakness was in the side muscles. But weirdly, my third SFEMG was with a neuro who specialized in ocular MG. I have almost no eye symptoms but he insisted on testing the muscles around my eyes anyway. And that's what got me diagnosed. Evidently he could see something on the EMG that wasn't causing me symptoms.

If your reasons are religious, I won't argue. Even if it's just a matter of risk, I understand that, too, especially because one course of IVIG contains antibodies from thousands of donors. My neuro said the reason it's so expensive is that such extensive testing for viruses is done. Still, I do understand such concerns. You might consider plasmapheresis, though! That doesn't, or doesn't always, use blood products from donors. And yes, the effect is only temporary. Some people on this list have it every six weeks. A visiting nurse comes to their house, or they go to an infusion center.

I chose Imuran because my MG isn't severe or dangerous (I have no breathing problems). My understanding is that Prednisone is a lot stronger and works a lot faster than Imuran. But everyone I know on Prednisone is dying to get off of it because of the side effects. So I decided I would rather wait for the Imuran to start working, which can take a year, and even take the chance that it won't work at all, rather than go on Prednisone. Like I say, there are some people who don't have this luxury of waiting--I am not that sick, and I have the help I need to get done what needs to be done. Some people are so sick that the side-effects of Prednisone are worth it.

Abby

I have had multiple SFEMGs which were all completely normal. Most of them were done by highly experienced neruophysiologists, in the best MG centers. They were done correctly, on weak (and even extremely weak) muscles, without mestinon or any other interfering medication.

I do not have antibodies detected in the usual tests. But, was found to have MuSK antibodies using an experimental assay in Oxford.

My neurologist thinks (and I believe he is correct) that the combination of severe MG, with completely normal tests, made them question this diagnosis again and again, even though it was clinically unquestionable, and there was no possible reasonable alternative diagnosis .

Everything I am reading now from all the posts including yours is very interesting and has helped me to see better what I am dealing with. Thanks so much for your input.

Blondieslp, I am seropositive for Acetylcholine modulating antibodies. 3% - 4% of MGers only have those, though I suspect it's more.

The AChR and MuSK antibodies may only be the tip of the neuromuscular junction malfunction iceberg. Simply because you are seronegative does not mean you don't have MG. MG is a clinical diagnosis that is backed up with tests. There simply aren't that many other diseases that look, walk, talk and droop like MG!

Having a good neurologist is key to figuring things out and getting good care.

I wonder if it's the Prednisone making you feel shaky. Do you know that it can cause glucose issues in some people and in some it can cause diabetes? I think it's worth your while to talk to your primary doctor about setting up a walk in lab appt. for when you feel shaky. Or find someone with a glucose meter to check your blood glucose. Sometimes those "mini-clinics" in malls and grocery stores have the ability to do a quick check of your glucose too.

Don't get discouraged. MG can be a tough disease. The weakness can be unpredictable and you have to be able to roll with the MG punches or you might find yourself upset on a daily basis about what you can't do. Try to alternate activity with rest. And keep as coolish as you can!

Have you seen a neuro-ophthalmologist? They aren't the same as an ophthalmologist/regular eye doctor. They have tools to determine if you have fatigable eye muscles and what degree of DV you have.

Since you now have breathing problems, you should really go see a pulmonologist. They should check how you are doing now and then, if you get worse, they can see how much worse. Neurologists and pulmonologists work together in a hospital if a person with MG has to be admitted. There is nothing like having a very good pulmy. Mine puts in standing orders for breathing tests, especially MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure), which are specific for someone with a neuromuscular disease. If I get worse, I get in right away for tests whether I have an appt. or not! She knows I am the best judge of how my MG is doing and trusts me.

I hope you will have more conversations with your neurologist and your primary doctor (about glucose and other matters). Your general health is important to be checked out too from time to time. When was the last time you had an ECG?

Good luck with all of this. MG isn't fun but you can deal with it. Give yourself some time to adjust.

Annie

I fully agree with that.
Although, sometimes having a good one is not enough, and you need an extraordinary one. Which may take a very long time to find!

A pulmonologist with a good understanding of neuromusuclar disease is indispensable, once you have respiratory muscle involvement.
Preferably, also find one that has a good understanding in non-invasive respiratory support, and knows if, when and how to use it.

Also a good GP that can orchestrate it all, is very helpful.

Alice