[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.

I'm still on my diagnosis journey...if everything is negative, how did the doctor decide it was still MG? I get the feeling that my doctors (and I've seen 3 neuros who all keep bouncing me around) don't have a clue why I would have symptoms and not test positive. I am an epidemiologist and and I understand the numbers and percentages; I'm not sure how much they put credence into someone's symptoms without some kind of medical sign. It makes me feel like I'm crazy, but why would someone fake increasing weakness/fatigue? I like to run! I like to be active! Why on earth would someone fake this? And how? I'm looking to hear from someone who may have been through something similar. I need some support.

Hi, and welcome. I'll tell my story. My first symptoms of MG were atypical (hardly any eye involvement, and weakness mostly in my sides). I tested negative for the antibodies (and MuSK, and LEMS). I had a single-fiber EMG that came back "borderline."

My symptoms got worse, and they tested me for everything else they could think of--nothing. So I had more blood tests (negative) and another SFEMG ("mildly abnormal, but not abnormal enough for a diagnosis of MG").

Then I got even worse, and told the doctor: we have to do something! So he referred me to a neurologist in Boston (I live in Rhode Island). He specializes in ocular myasthenia gravis. He did a stimulated SFEMG on my face (even though I have no ptosis, no double vision--just a little eye strain now and then). In his opinion, it was very clearly positive. He diagnosed me and sent me back to my regular neuro, who accepts the diagnosis.

The process took 15 months from my first symptoms to diagnosis. It was a rough time. It's terrible not to know what's wrong, and even worse to be doubted--and the worst of all is doubting yourself. But from other stories I've read, I know that 15 months is excellent for someone in my position. There are people here who have waited decades for a diagnosis--even though when they were finally tested for antibodies, they came back positive.

Would you like to tell us about your symptoms?

Abby

Hi Tyson,
Not sure when you replied to my email but just got notice today. I appreciate your reply and just wanted to say that I was on prednisone for about 3 months but had to many adverse reactions. And when it caused my stomach to burn Dr. T. told me I had to get off it because it could cause ulcers. I did feel better as far as the MG was concerned but the repercussions not worth it. I have started now to not feel as well but I really think my Dr. thinks its all in my head or from the stress in my life. He was very instrumental in
field of MG. So you kind of think he knows whats going on enough to correctly diagnose someone but he also told me that the heat does not affect MG, which I disagree with. He is in his 80's (I think) now. He tends to forget things. I have felt I may need a second opinion but I don't know who to go to. Sometimes I feel maybe he's right about my diagnosis but why do I not have the energy to function, why does my chest bother me, and now that I am off Prednisone I have much increased Fibromyalgia pain. Also my mid back has been really painful. Burning, sometimes shooting pain and aching.
I have not had this much FM pain for some time. I really think my immune system is turning on itself in so many ways. Anyway, I've gone on enough but wanted to mention
I was just in Maine last week. I was born there and most of my family lives there. In Farmington. I also, have family in the Portland area. Are you near by? I live in Ma. now for the last 15 yrs. I lived in N.H. for most of my first marriage and miss the Wolfeboro area. Anyway, if you can get back to me with any further suggestions I appreciate it. Hope things are alright, as best as they can, be for you. Blondie

[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!

Hi Beannie,

I know about this craziness you feel. Why does this have to be so complicated??? All I know is that from my own reading a person can have MG and still test negative. None of my tests were positive. When I started feeling short of breath and then weak, I did not know anything about MG. I just kept searching for answers on the internet based on my symptoms and MG seem to fit. The Dr. I see is a pioneer in the field of MG and yet he is now questioning my relationship with my husband and if I am happy. Which of course, makes you feel that he feels I have these symptoms because I am stressed and having marital problems. While I am stressed, I developed these symptoms before I knew anything about MG. I too say, why would I fain shortness of breath, weakness to the point that I would have to do a little housework then sit down and rest or lay down. Granted, housecleaning is not my favorite activity but I don't like a messy home. I need organization and order. I also didn't want to spend 3 days cleaning a 4 room apartment (in our multi-family home which we now have sold). I used to be able to clean it in a little over an hour but now even our new place takes me much longer than it should. I feel sometimes like everything has slowed down. I can't seem to get anything done quickly like I used too. And I also know that all of this is not just in my head. So, where do you turn? It makes you want to just hibernate and just try to manage the best you can. So Beannie, I am at a loss too. I am still on Mestinon but not really sure how much it is helping. I need to go back and see the neurologist but why? I guess I would like to discuss why he asks me the questions he does about my personal life. Maybe why he thinks I don't have MG? Is it based solely on the negative results. What??? Why????
This whole thing is tiring too. Especially when you energy is limited.
I'm sorry I could not be more encouraging. I hope knowing that others are frustrated as well helps you not feel alone. I will keep you posted. Please let me know if there are any changes with you. Take care, Sherry

Abbey,
If you are able too, please read my posts I have written to others. I have just replied to a few people and now I must take a break from typing. You will be able to see my own frustrations and roadblocks to understanding my health issues and diagnosis.
Thanks so much, Sherry

Sherry, I'm so sorry for what you're going through. For me, that was the hardest stage--not knowing, and being doubted, and even doubting myself. When I finally got a diagnosis, I was set free from all of those peripheral troubles, and could just concentrate on dealing with the disease itself.

For a lot of people (maybe for most people) stress triggers MG symptoms. So even if your symptoms are made worse by stress, it doesn't mean you don't have MG!

The only thing I can advise is persistence. Don't give up. Don't give up! I came to what I thought was a dead end--couldn't get a diagnosis, and my neuro didn't seem interested in pursuing...well, anything. I was so weary I sort of accepted that. Then I rallied and went in again and pushed: I am sick, I need answers, can we do something? That's when he sent me to a different neuro who gave me a diagnsosis. I know you are exhausted from your disease, and that makes it hard to fight this battle. But it is persistence that will make the difference. Do you have a friend or relative who could come with you to an appointment and help you insist a little?

I would suggest seeing a rheumatologist about the pain in your knuckles, hands and wrists. That's not a myasthenia symptom, but there's another autoimmune disease, rheumatoid arthritis, that could give you symptoms like that. I'm not saying you have RA--I'm just a patient who reads stuff on the internet, so don't take my opinion too seriously!--but I think you should have it checked out. I don't know if RA could cause your other symptoms, but I do know that autoimmune diseases often go together.

Please keep fighting. You may be much closer to getting somewhere than you think you are.

Abby

I too am seronegative. All blood tests were normal, but diagnosed with generalized MG by SFEMG. I am on 90-120 of Mestinon daily and 30 prednisone. Mestinon alone worked for awhile, but then wasn't doing as well. Prednisone has been extremely helpful, despite shakiness and munchies. Over the last two weeks the doc tried to reduce the prednisone, trying to get me to a lower level by reducing 5 mg per month. I only made it two weeks on 25 before my pre-med symptoms returned. So now I'm back on 30 and working to get a thymectomy scheduled. You're not alone and I wish you the best in finding a good balance of meds.