My father was diagnoses with myasthenia gravis in december 2011. He has been on prednisone and cellcept . He was recently hospitalized after having a nonproductive cough and they found he had a cardiac arrythmia (atrial fibrillation). He then received a 3 day treatment of IVIG. He seems stronger cough a little better unfortunately still in atrial fibrillation and has to go home on Coumadin.

Being the RN in the family everyone is looking to me for answers and suggestions. My father has been a vegan for 10 years. My question is about diet. Do nightshades harm or help symptoms? He could stand to loose some weight (he has lost since starting treament due to slowing down eating) even on prednisone. Thanks for any input!

[/FONT]My name is Darci, I live in Chicago area...Just to give a short history...way back in 2001, right after my only child was born (I was 33) I was having issues with my arms...like I would be holding my new infant and it was like my arms wouldn't work (like they locked up or something) anyways, after seeing a rhuematologist and going through many many different tests, he diagnosed me with Fibromyalgia....so for the next 9 years I just kind of "blamed" Fibro for my "issues". I started to feel though, that things were not "right" and it just seemed like it was more than Fibro or something different. My arems and legs were giving me A LOT of problems...I had fallen a few times after getting up from sitting...I could not do normal things some times with my arms and legs...I am only 43, and felt like I should not be having issues like I was/am...some times buttons were tough for my hands, most times walking up one set of stairs, I would exhaust about halfway up...I kept thinking, "I know I am out of shape, but this is crazy...I don't weigh 600 lbs, (not even close to 200...I will leave it at that, I am a woman and I weigh between 100 and 199) why is this hard and why am I out of breath??? " I went to another Rhuematologist for another opinion who agreed with the first, Fibro. Well, that was fine for a very short time...I then decided to go to a Neurologist. Was referred to one after going to a walk in clinic, because I needed to do something fast....(WHO WAS A WITCH with a capital B) she was dismissive and didn't believe ANYTHING I was telling her...so I went to my General Doctor (he is a hematologist by practice, but is more a GP) He reffered me to another Neurologist and handed me the name Myasthenia Gravis and said "Once this doctor has run all his tests and thinks he is at the end...if he hasn't run the test to test for Myathenia Gravis, tell him that I want him to run this test." Well, after nerve conduction tests, EMG, CT and MRI of brain, other blood tests....I told the new Neurologist that my GP wanted him to test for MG...he was confused as to why...but did it anyway. I didn't think I had it either (no droopy eye, no facial issues (I thought)...so after all tests come back, the Neurologist (and myself) are in shock...as you know with the test that checks for the antibodies...a 0.5 or below is normal....well my level? or number was over 248 or something...giving me the diagnosis of Myasthenia Gravis. I have not started meds, yet...but will be in the coming weeks - He is talking Mestinon first...but also mentioned the Prednisone and also the surgery...I have a list of questions for him already...but I am a bit nervous and confused and all that....I am now finding some answers to a ton of things from my past...like why the allergist would not do the skin test on me, he kept saying I have not passed the breathing test...and I never understood why I couldn't...I didn't feel like I was REALLY having a BIG PROBLEM breathing...but now I think I know why!!! I just want to check out this site and read more and get as much info as I can....thank you for the opportunity to blab about my stuff....Not sure what is next. My name is Darci, feel free to contact me!!!

Hi Darcie. Just fyi I am truly empathetic regarding your symptoms and the reaction you get from some 'specialists'. I was told by one neurologist that my problem was my posture!

Interesting to note that Mestinon works for my double vision, at the beginning of the day. As the day progresses and as time progresses, things get progressively "worse". Dr. says he doesn't know why Mestinon works for the double vision because this is all "psycho-sematic". Of course, he can't explain anything (double vision, left side weakness, swallowing difficulty getting worse, ...), therefore, nothing is wrong.
It is nice to have a place to vent and see that we are not alone, even though these docs seem to need a good waking up....
Wife pushing for me to go to another Dr. Last visit convinced me that it is not worth the effort. Not sure what the answer is or may eventually be, but symptomology used to be an indicator of the problem. All of these symptoms just lead to "imaginary"? Odd. Thankfully, my wife KNOWS because she SEES all of this daily.

It depends on what you are classifying as a nightshade. To a vegan there are thousands of plants they call nightshades. Most belong to an order called Polemoniales, and they are loaded with alkaloids. They could have hundreds of effects on the neuromuscular junction or none. Proceed with caution. In particular, anything with belladonna would not be good because the atropine is and anticolinergic and the opposite of Mestinon.

My experience with MG is that exotic dietary changes will flip your symptoms all over the place. I would abandon veganism for awhile unless your dad is under the care of a good physician who knows natural pharmacology, neuromuscular diseases, and molecular immunology. Let us know if you find one.

*admin edit* Note what they say here shows that some nightshade alkaloids act similarly to Mestinon, a cholinesterase inhibitor.

*admin edit*

Hi, I am new here too. I have been having problems for over 2 1/2 years. My symptoms have seemed to spare my eyes but started with general fatigue which led to shortness of breath, difficulty swallowing and now to tingling to the bottom of my feet, palms of my hands, cramping and muscle twitching in various parts of my body everyday and seems to be progressive. I saw a neuro 2 years ago who did a head CT and said I was fine, dx me with chronic fatigue syndrome and told me to try swimming. I was seeing different Dr's over the last two years every time a new symptom started but none could find anything wrong. Then in October 2011 the muscle twitching and cramping started. When I started feeling a tingling to the bottom of both feet I made another appointment with a neuro at a teaching facility figuring they would be more thorough, which they were. They spent at least 20mins doing a full neuro exam. Scheduled me for an EMG which came back abnormal. They said they were thinking MG. Next was a SFEMG. That came back abnormal also. I am still waiting for results from AChR and MUSK bloodwork. They started me on Mestinon which does not seem to make any difference. I am concerned because I cannot find anything about MG causing muscle twitching or cramping but I have read that ALS does. I wish the Dr's could understand that the longer it takes for a Dx, the harder it is for the pt's to plan for the future.
Thanks for letting me vent, I feel better now.

I am currently working on a diagnosis for symptoms that have been going on for some time, but I have blamed them on other conditions or getting older.
I have had disturbances with muscles and nerves for about 12 or more years and problems with muscle fatigue. For the past three or so years I have had the problem that while I was in the middle of talking, I just gave out of breath, and if I continued to talk, I would be hoarse and my throat muscles would ache. I have also had a droopy eyelid that was more problematic when I was very tired. I have had a complete thyroidectomy due to a multinodular goiter. I have had ups and downs with my thyroid condition and blamed a lot of my weakness and the eye droop on that. I have had multiple cases of bronchitis over the years that always make me very weak and ill. Not until I started having the episodes of seemingly being too tired to breathe did I start putting things together and wondering if I had something like MG. And these episodes would come on for no reason. Did not have to be doing anything. In fact, standing in a stationary position, such as waiting in line at the store seemed to be more difficult than walking along. The only thing I can figure is that different muscles are taking their turn while you are walking, but you are using the same muscles continually to stand. Just my take on things.
I finally ended up going to the ER one evening with the breathing thing in late March of this year. I had never had it so severe that it scared me like this. What really scared me this time is that I was also having extreme heart palpitations, so much so that I was too weak and shaky to walk. I was seen by an electrocardiologist in the hospital and he confirmed that I had an arrhythmia. I don't know if this is something coincidental or is related to my other symptoms.
I was also seen by a pulmonologist, and tested and I do have some lung damage, but not severe enough to cause inability to breathe. I have more difficulty breathing out than breathing in. She referred me to a neuromuscular doctor who with physical exam alone suggested that I had MG. He did the EMG and the single nerve fiber test and told me I had nerve damage that was more of a weakness of the muscles. He ordered bloodwork, which has not come back yet. So in the meantime, I am trying to learn all I can about this disease. Any help or pointer would be greatly appreciated. Sounds like I lucked up on finding a good neurologist right off the bat.

Hi, and welcome. I'm so glad you're seeing a neuro who is testing you for MG. Please know that negative bloodwork doesn't rule out MG. Many of us here have never tested positive for antibodies. Also, if you test negative for the AChR antibodies (the most common), they should test you for LEMS and MuSK. Even if you test negative for all three, you might still have MG. There are other antibodies that cause it, and some people test negative at first and positive later.

Has anyone suggested POTS (Postural Orthostatic Tachycardia Syndrome) to you? I learned about that here, because some of the symptoms mimic MG. It would be worth googling. It causes a lot of the symptoms you mention.

I find it very hard to stand in line, too, and I think you're right: it's because it puts continual strain on the same muscles. I have a rollator (rolling walker with a seat) that I bring to department stores or anywhere that I'll have to stand on line. That way I can sit.

It's typical of MG to get worse when you have an infection. My guess is that an infection kicks your immune system into high gear, and then it produces more of the antibodies that are attacking the neuromuscular junctions, but I'm not sure if that's the real reason.

Many of us here have thyroid problems. Did you take PTU or methimazole (thyroid suppressants) before your thyroidectomy? There's a study that suggests that these drugs can cause MG. I think that's how I got it. If you're interested, I'll try to find the link.

Since your thyroid gland has been removed, I'm sure you're taking synthroid or some thyroid hormone replacement. Do you have your numbers checked regularly to make sure you're not taking too much?

Please feel free to ask questions here.

Abby

Thanks Abby, for answering my inquiry. Yes, I remember seeing Musk on the bloodwork order, but not sure about LEMs. I will check out the POTS info. Thank you for that suggestion. There are many times when I am standing in line that if it weren't for the embarassment and attention, I would prefer to lay down.
No, I did not take any thyroid suppressants before my thyroidectomy. I did take synthroid before to try to halt the growth of the nodules. I continued on the synthroid for over a year and fell into even further state of hypothyroidism. Felt like the walking dead. I finally was able to convince my family doctor to let me try Armour thyroid, which is made from ground pig thyroid glands and within two days I was a new person. However, I have been back and forth from hypo to hyper over the past couple of years due to not being able to keep a steady dose in me.
I have my levels checked more often than the doctors feel I should, but I can tell when my dose is not working properly.
I could have sworn I was hyperthyroid when all these palpitations began, but the levels came back normal, so they continue to bother me.
The cardiologist I saw last hooked me up to an event monitor and diagnosed me with paroxsysmal supraventricular tachycardia. He wants to refer me to an electro cardiologist to see about getting an ablation to stop the irregular beat, but I would like to stay on track with trying to get this weakness issue diagnosed completely before going down that path.

Hi Everyone, Newbeeie


First diagnosised May 2011 with Mg. My experience is the DV. I been wearing prizsm glasses along with takening steriods (30mg) and mestion time span(180mg). Dec.2011 the DV went away and I started decreasing the steriods down to 05mg continuing the timespan. Just recently after having stressful week ( May 2012) my Dv has come back. I have a doctors visit at the end of this month, but meanwhile i going to increase my steriods back to 30mg and get plenty of rest and try not to stress at all.