If you do decide to go on Imuran, Blondie (way cool explanation, thanks!), you need to have the TPMT test BEFORE starting it.

http://www.labtestsonline.org/unders...tpmt/test.html

Yeah, life is fleeting. I'm sorry for the loss of your parents.

Annie

Thanks so much to all of you who have replied to my post. I really appreciate it.

I want to thank you all for responding to my post. I have to call the Neuro today to let him know how I am doing since he has decreased the prednisone. At first I thought he was taking me off it, but I can see from the schedule he has me on that he is getting me to a every other day dose. I was only on a full dose of 15mg. at breakfast and 15mg. at lunchtime. I will end up being on 30mg every other day. Can anyone tell me how much they take and or if they feel Prednisone really helps? I was feeling pretty good on the full dose but the weakness has come back and I am feeling discouraged. Even on what seems to be a low dose even at 30mg. daily my face was getting puffy. This is an adverse effect I didn't want to see. My Neuro, I don't think is convinced I have MG or that it is another Neuro disorder. I really feel that this is what I have. I had 2 occasions of double vision several years ago and it was chocked up to medication I was on at the time. Then 2 years ago I started with the shortness of breath and weakness in the upper part of my body and right eye lid, hoarseness, voice weakness, choking. In fact, I choke several times a week and have choked on my own saliva and inhaled it into my lungs. I choke on my pills and vitamins. I try to be so careful. Especially if eating in public. I am dizzy alot too and unsteady. I was bumping into things and some days are worse than others. I have lost over 60ibs. Not sure if the Mestinon is causing it but I get very shaky at times. In fact, I am feeling that way right now. The Neuro doc gave me Anaspaz to take for that but I try not to use it. Has anyone tried this? Or had a problem with Mestinon like that? Anyway, enough for today. Please contact me if you have any other help suggestions or answers to my questions. I am trying to being as informed as possible and to know I am far from being alone is of great support to me. I am new to this and I feel the best thing is to get educated as much as possible. Thanks to all, Blondieslp

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.

Thanks so much for all the information. I am on an estrogen patch because my estrogen level was extremely low and I am on medication for hypothyroid. So I have had and are experiencing hormonal issues. MG came on just in the last 1.5 year or so after starting on the hormone patch. I have had under active thyroid issues for many years. I will take a look at the book as soon as I can. If you have any other suggestions, I would really appreciate it. I had to call my Neuro just a couple days ago because my stomach started burning quite a bit. He called me back and told me to stop the prednisone altogether because I could get an ulcer. He had been titrating me down. I was concerned that he wanted to stop me at that point cold turkey but he says I have not been on the prednisone long enough. I believe its been about 2.5 months maybe a little longer. But he says I should be fine. I hope so. I was also shaking a lot, had been charlie horses, face puffiness and my belly is bigger. I really wanted to get off it. Just hope this works and I can find alternative treatment. Hope we can talk again.
Thanks again. blondieslp

Hi Blondieslp,
If you want to have a rather thorough information about the different MG treatments together with their pro's and con's, see:
http://neuromuscular.wustl.edu/mtime/mgrx.html
It is also accessible through
"Useful sites for MG" on top of the front page and the last thread in that chapter.
Maurice.

[QUOTE=blondieslp;785180]Thanks so much for all the information. I am on an estrogen patch because my estrogen level was extremely low and I am on medication for hypothyroid. So I have had and are experiencing hormonal issues. MG came on just in the last 1.5 year or so after starting on the hormone patch. I have had under active thyroid issues for many years. I will take a look at the book as soon as I can. If you have any other suggestions, I would really appreciate it. I had to call my Neuro just a couple days ago because my stomach started burning quite a bit. He called me back and told me to stop the prednisone altogether because I could get an ulcer. He had been titrating me down. I was concerned that he wanted to stop me at that point cold turkey but he says I have not been on the prednisone long enough. I believe its been about 2.5 months maybe a little longer. But he says I should be fine. I hope so. I was also shaking a lot, had been charlie horses, face puffiness and my belly is bigger. I really wanted to get off it. Just hope this works and I can find alternative treatment. Hope we can talk again.

I am so glad you responded. That is very interesting to me that the MG came on after you started an estrogen patch. From what I have read, it actually sounds suspicious. PLEASE read these books by Dr. Lee that I referenced. I gave my mom the cream to use on her rosacea and it has cleared up almost completely in three weeks. I gave it to a friend of mine to use on her psorisis and it is actually healing her sores. These are both thought to also be autoimmune related. I have now given a bottle to my brother to use as he has colitis. The cream that I am talking about is completely natural and your body actually expells what is not needed. The research that I have found on it shows no risk or side affects. Besides the MG and Graves symptoms subsiding, my hair is actually growing, my nails are long and strong, my skin is clear, I no longer need a nap in the middle of the day and I sleep well at night. I feel like I am really starting to enjoy my life again and my husband said that he is really enjoyng being with me. My cycle has returned and so has my sex-life. I actually have the energy to excerise and have lost a few pounds. The strange fat deposits that I gained from the prednisone are actually starting to disappear. Besides the addition of the cream, I have gotten serious about taking my vitamins, and have really worked on cutting down on my sugar and simple starch intake. These books are full of information about a healthy life-style. I have learned to proceed with caution and have taken control of my health back from physicians. I recently visited my female Dr. for my yearly exam. When I spoke with her about my cycle issues and pain that I have been experiencing, she said that it sounded like poly-cycstic ovarian syndrome. She suggested a medication to take care of it, but wanted to discuss it with another physician prior to prescribing it due to my medical issues. When she called me later to discuss the medication, I was surprised at her response. She discussed my issue with the other physician and they decided that if I was already using the progestrone cream that there was no need for the medication. She said that the cream would take care of the problem naturally. So this tells me that physicians know that this works but they would prefer to prescribe harmful medications vs. disclosing a natural, harmless remedy. When the Dr. suggested the meds and I asked about side-affects, she told me that the only known side-affect was loose stools. When I looked the medication up online, the studies showed that the medication causes damage to the pancreas, kidneys and liver. No Thank-You!!! I don't need more medical issues. Please keep me posted.

[QUOTE=Christel Jackson;785351]Hi Christel,
I wanted to let you know I have not read the book yet. I feel my life is too full and crazy but I want to read them. Are you saying that you have success taking the progestrone cream? I called my Hormone Dr. last week and saw my Dermatologist and the Dermo Dr. told me to start using Rogaine for my hair loss. If it doesn't stop falling out soon I will be bald. Its been getting worse. My hormone Dr. told me I needed progesterone and told me to go out and get the cream and put a quarter size amount on the inside of both my arms. I am having a hard time finding it. So have not started it yet. Are you saying that you feel better just by using the progesterone cream? or is it some other cream? I am EXTREMELY INTERESTED in knowing what this is you are talking about. I now also am having alot of pain from the fibromyalgia and in the last month or so my middle back is extremely painful, is burning and aching too. My knuckles, hands and wrists are hurting worse than ever. I just keep pushing myself to do what is needed. All this pain, and problems associated with MG is too much to bear at times. I look forward to hearing from you. Thanks, Sherry Can you give me the name of the book again. Thanks!