Originally Posted by AnnieB3

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

Originally Posted by blondieslp

What is refractory MG? Just vision?

Originally Posted by alice md

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

Originally Posted by AnnieB3

Blondieslp, Do you have a more informal name or do you just want us to call you by this?

It's okay if you ask your neuro to run a glucose test but it HAS TO be first thing in the morning and fasting. And any results should be sent to your primary doctor. Neuros can run tests but it's often not their "specialty" and they sometimes don't like doing things outside of it.

Endocrinologists are the ones who take care of diabetes or any blood sugar issues. Your primary doctor can run basic testing and should have copies of EVERYTHING that other specialists do for you. So keep them in the loop.

BTW, if you have antibody tests redone while on Pred, it's useless. Pred suppresses the immune system (i.e., antibody production) and it's probably a waste of money. So might be a SFEMG because, again, those drugs get rid of signs of MG. It doesn't mean you don't have MG but that the drugs are doing their job of taming it.

Annie

Originally Posted by catie

Refractory MG means that it is resistant to treatment.




Imuran is just one of the long-term immunosuppessants used to treat MG. Each person with MG is different in terms of how they respond to treatment. So there is really no "best medication" for MG. Imuran takes awhile to be effective (I think 3-6 months, maybe longer).


Also...when I was on prednisone my internist (who also specializes in endocrinology issues)gave me a glucometer so that I could monitor my fasting blood sugar at home. It's easy to learn how to do the test and you just need a drop of blood. You might want to ask your doctor about that.

Cate

Originally Posted by blondieslp

I have been treated in the last few months as though I have myasthenia gravis but do not have the antibodies to it. I am on mestinon and more recently prednisone. I was really beginning to think there is a light at the end of the tunnel but now my neuro is cutting me back on the prednisone I think to get me to an every other day dosage. But I am beginning to feel like crap again. My emotions are beginning to get a little out of hand and the weakness I feel in my chest is getting worse. I have had most of my symptoms in my eye, really bad throat issues ( hoarseness, can't sing well and at times my voice is very weak), neck and chest area. Is there anyone with similar issues that would be willing to share with me their experience and what the future holds? Any help would be greatly appreciated. I also cannot handle the hot humid weather. It makes me very ill and I just can't seem to function. Is there anyone out there that is AChR negative? I don't even show with Musk. Please help?

Originally Posted by Christel Jackson

Hey blondie! I don't have any of the antibodies either, but have been dealing with MG for 18 years now. I have just been positively diagnosed with MG through an EMG about 2 years ago. Mestinon has never worked for me. I take prednisone during flare-ups. I refuse to take a maintenance dose in between. I used to have an episode about once every couple of years. After having my daughter 4 years ago, everything has gone hay-wire and my problems have worsened and become constant. I have recently discovered that my hormones are out of whack through working with a holistic healer. I reached out to her out of desperation. With her help, I came up with this idea that this may be causing my issues and have confirmed it through my medical doctors. The book "what your doctor may not tell you about premenopause" is wonderful. I urge every woman to read it and I have been using the natural progesterone cream called Uber Cream that is discussed in the book. I have been using the cream for three months and have no symptoms of the MG or Graves. I have energy, have corrected my monthly cycle, and have gone off of my anti-depressant, and have actually been able to loose some weight. The adrenal glands, thyroid, and thymus are all hormone driven and creating organs. If one hormone is deficient, the body, depending on one's sensitivity, may spiral out of control. Being deficient in progesterone, or estrogen dominance is believed to be connected to auto-immune disorders in females accordiing to the authors. The more I read, the more connections I am seeing and I find it to be exciting. I finally feel some control for the first time in years. Please read the book, it can't hurt. It's an interesting and an informative read if nothing else. Keep your head up girl! Don't dwell on negativity and don't accept other's horror stories as your own fate.