Hi all! I just found this forum, and I'm hoping to find some answers and understanding of this rare disease I have been diagnosed with. Here is my story...

I was an active healthy 55 year old female. Seven weeks ago, my vision all of a sudden became jumpy and blurry. I thought something was wrong with my contacts. I went home and started messing with my contacts. The next day my eyelid was "swollen" and I thought it was because I had messed with my contacts. I realize now that was the droopy eyelid. Two days later, my face felt numb and I could not raise my eyelids to put on my mascara. Ok, better call the doctor!

She had three things she wanted to draw blood for, one being MG. Two days later it came back positive. I made an appointment with a neurologist and had a chest scan on my thymus, which showed a tumor. By the time I saw the neurologist a week later, my symptoms had rapidly progressed. Trouble chewing, holding my head up, walking, etc. At that point they scheduled me for a thymectomy. The thymectomy was scheduled for two weeks later. When I went in for the surgery, they decided I was too weak to do the surgery. They admitted me to the hospital and gave me IVIG infusions for two days.

The surgery went well, and the tumor was benign. I am now three weeks out of the thymectomy, but the MG is still awful! I am home now and have PT and OT 2-3 times a week. My arms and legs just don't want to work. After I do my PT (which is VERY minimal, like 5 minutes of leg and arm exercises with1 lb. weights) my whole body shakes and convulses for about a half hour. My symptoms seem to change daily and sometimes several times within a day. From eyes, to face, to arms, to legs, sometimes even needing a walker.

Right now I am on 80mg of steroids daily, and 120 mg of Pyridastigmine 4 times a day. I go back to my neurologist next week and I think they will start weening me off the steroid.

This MG has been very hard for me to wrap my head around. Two months ago I was on vacation in Rome climbing the Colosseum stars with no problem! Now I can't even get down my stairs at home without having to rest when I get to the bottom. I used to swim a half mile or walk 4 miles a day, bicycle, kayak, etc., UGH!

So that's my story, now here are some of my questions...

1. Have any of you heard of anyone whose symptoms came on this quickly?
2. Will it get any better once they start weening me off the steroids?
3. I've heard it can take 2 years before you go into remission after a thymectomy, but do the symptoms lessen before remission?

I'm sure I will have more questions after I post this, but any insight into this new normal of mine would be greatly appreciated!
Thanks!
Kristi

Thanks to all for posting your experiences, and a special thanks to Swallow123. I find myself in the maybe he does maybe he doesn't camp right now. I'll start from the beginning.

5 or so years ago- After a particularly stressful time at work, my eyelids drooped. This lasted about 4 weeks before bouncing back. MG was suspected, but nothing much was investigated.

3 years ago- Collapsing spells. Strong emotion such as sadness or laughing would cause me to lose all muscle control and collapse to the ground. Usually laughing really hard caused this. I tried to fight it each time, but each time I would lose and eventually just have to fall. This started after my grandmother's death. Neurologist diagnosed me with isolated cataplexy and called it a day. This cleared up after a few months.

Inbetween these 2 incidents I had troubles with muscle control especially when laughing. If I was holding a glass, my arm would just drop like a rock sometimes, but for the most part it was manageable. Came and went, so I didn't really worry about it.

Last year- Woke up with double vision. Saw my GP, opthamologist, neuro opthamologist and then a neurologist. MRI's x 3, CT, and lots of blood work all came back negative. Multiple sclerosis was the suspect. My double vision went away after 6 very hard months, but I was left without the ability to voluntarily move my eyes left or right for an additional 4 months. The scheduled me for a spinal tap.

2 months ago- a couple of days before my spinal tap, I started to feel my muscles shake again when I would make demands on them. The day before the tap I awoke with extreme weakness in my body, mainly in my shoulders. It affected everything I tried to do. Took the bus to the doctor. Almost didn't make it off the bus as the weakness nearly overwhelmed me. On his advice, I checked myself into the ER at St Pauls the next morning. I was admitted into the hospital for 4 days on Mestinon and IVIG treatment. I started to improve a tiny bit each day. The resident neurologist was certain it was MG. Given 60mg mestinon x 3 a day. Just under 2 weeks after leaving hospital, the weakness was gone, stopped taking mestinon, and got back to my life as it was.

3 days ago- saw the MG specialist in town on a check up as the IVIG should have run it's course. She said everything looked good, but everything that's happened does not fit MG. ACH and single fiber EMG tests normal, thyroid levels normal, thymus unremarkable. Nodule on my thyroid that was biopsied while in hospital, but no news on that yet.

Last couple of days have been a bit worrisome though. I feel some familiar shakes coming on. No weakness per se, just the feeling that I am over caffeinated. A little trembling when I laugh. Took a mestinon today just to see.

I hope it's not coming back. Although, I have been able to trace each instance to a major stress, which should help me keep a little control. Maybe. I don't want to go back into hospital, and I really don't want the IVIG again, but I'll do it if I have to.

2 things are getting me through. My girlfriend stood by me every day in hospital, and has been a huge help. My family as well to some extent, but they have decided to become google Doctor's, and like to give me advice on how to deal with it. My Dad thinks I should take up running. I don't think he knows what MG really is. The other thing that is getting me through is the big dumb smile on my face. I am trying my best not to let it bother me, and just accept it as it is. We shall see what happens in the coming weeks I guess.

That's me so far. Thanks to everyone for sharing their stories, and I hope some of my experience can be of some help to someone.

Thanks for listening,

Ryan

Struggling to understand if my symptoms are caused by real disease or by my mind. I have been dealing with this for over 9 months, but after many negative tests, one has to wonder...

It started with my wrist/arm and weakness/numbness. I was told I had extra cervical ribs and that I had a pinched nerve. I did 3 months of OT and PT. The only improvement was from the short course of steroids I did during that time. Things plateaued... it wasn't much better or much worse. It moved into my left arm, but still not too much. I saw a neurologist eventually and had a negative EMG and a negative cervical spine and brain MRI. I decided since everything was normal that I needed to just chill out. I asked if I could have a conversion disorder and my neuro didn't think it was likely, but he appreciated my desire for my symptoms to be harmless. So I just kept on keeping on.

Then 2 months ago, it started to become increasingly difficult to climb the stairs, wash my hair, run, empty the dishwasher, etc... It got worse as the day wore on or if I exerted myself excessively. Saw the neurologist again, and confirmed that I now have significant muscle weakness - especially in my legs. I had another EMG, evoked potentials, another MRI w/contrast and tons of blood/urine. EMG, EMG w exercise/rest and EEG were normal, regular MG antibody test was normal, and waiting on everything else. In the past 3 days, I have developed jaw fatigue as well as excess saliva. Chewing and swallowing only seem to bother me at night. I gagged tonight trying to swallow the Mestinon! That was after trying to eat a raw carrot

The neuro wanted me to try Mestinon... 60 mg x3 upsets my stomach but actually seems to mitigate, not eliminate, my symptoms. Improves my grip strength and seems to reduce the heavy, fatigue feeling in my legs - especially at night. I know that Mestinon can improve anything that affects the neuromuscular junction, so I'm not sure that it tells me anything. I tried taking only 30mg and didn't notice anything. I am wondering if taking something is just placebo? Maybe because I want it to be.

My symptoms seem to point to MG, but how could I have this if all of those tests are negative? I have not had a SFEMG, which I have read about on here, but don't really understand how it could be different from what I've already had. Bueller? Bueller?

Beannie, I was surprised to read that you have not had a SFEMG. It's considered much more accurate for the diagnosis of MG than a regular EMG. Not every neurologist knows how to do one--you have to find a neuro who specializes in neuromuscular diseases.

SFEMG is the test for seronegative patients with symptoms that suggest myasthenia gravis. I hope you can have this test soon.

Also, you say the "regular antibody test" was negative, and that you're waiting on other tests. Are they testing for other MG antibodies? They should test you for MuSK antibodies and LEMS, too.

Abby

I live in a major city and am going to a great medical center - that being said, they seem to be overly distressed that I have symptoms that don't fit together in a perfect neuro disease box. In addition to the weakness/fatigue, I have occasional fasciculations in my arms and legs as well as random muscle movement that I can't control. I also have sensory loss in my hands and feet (both temperature and pain).

I've been on the mestinon for 2 days and it really seems to help. However, it only seems to last for about 5-6 hours and it kills my stomach (does that improve with time?). I tried taking a Bentyl this afternoon to deal with the crazy cramping and it totally spaced me out. Of course, that was when the neuro called to talk! She wants to order the SFEMG and a lumbar puncture. The SFEMG to be done first. What is a SFEMG? How do they do it? I've had 3 EMG's already and two with the exercise/rest electrocute my hand and neck parts. Both times I had some positive results but they decided it was due to movement and not a real decrement.

I was tested for MuSK, but not for LEMS. It's only been a week and apparently it can take up to 2 weeks for it to come back. I get the sense from the docs I've seen that they NEED a positive test to help them know what to think. On the other hand, I am grateful for every negative test I get

Make sure you're off the Mestinon for 24 hours--preferably more--before your SFEMG! It can give a false negative. Also, make sure you're nice and warm. If the room is cold, or you're chilled, they can warm you up with a heating pad.

A SFEMG doesn't involve electric shocks. That's the good news. They will put needles into your skin, but they're thin needles like used in acupuncture. Then they'll ask you to slightly tense the muscle and hold it. The whole thing takes about 45 minutes. They'll try different places. The needles stay in for a while while they collect data.

If the needle hits a nerve, it hurts, but you don't have to put up with the pain. If you tell the doctor it hurts, he can move it to a less sensitive place.

The muscle-twitching isn't new, is it? I ask because that can be a side-effect of Mestinon. Mestinon also makes my mouth water. I'm lucky that it doesn't bother my stomach--that's a common complaint.

I hope you get some answers soon, and that they're answers you can live with. Hang in there. Let us know how it goes.

Abby

Would it also give false negatives to bloodwork? They had me try it last week and then did my bloodwork the next day...

The warming thing is so interesting too. It is freezing in the EMG room. I'm not sure how I can stay warm in there. Can that effect the other EMG tests?

The twitching has been since February. The neuro says that if muscles are getting proper signals, they can do that intermittently. The Mestinon certainly makes it more pronounced!

The only thing is that I don't have any eye symptoms. My eye muscles ache a little, but no one seems to think that is of any concern. My vision has always been bad, but it is even worse at the moment. I am going to go see my regular ophthalmologist because when they did the evoked potentials I discovered that I am 20/40 and 20/70 with my contact lenses in! I am old enough for my eyes to not be changing Or if they did, they would get better, since that tends to happen to people with nearsightedness as we near 40...

Thanks for the information!

Hi folks, I'm new! I am a grandma who hasn't felt well for well over 40 years. I had to quit work as a nurse in 2003 due to my health. A couple of weeks later I was so ill I could hardly get out of my recliner.
I have doctored for years and had gotten to the point that I was darned if I was going to die without a diagnosis. The doctors always said it was in my head. Finally got diagnosed with sjogrens in 2003 by lip biopsy---negative blood work though.
I was very ill much of the time and had lots of bad infections--MRSA and I also had Mycobacterium kansasii (a form of noncontagious TB) and had to be treated for one year with 8 antibiotics pills (3 different kinds) a day.
Eventually I was sent to a very good immunologist who changed my life. He believed me!!! His FNP did my work up and read through the 11 pages on one side, that I had written for them plus all the paperwork they had for me to fill out. The immunologist introduced himself the first day for a few minutes and in those minutes he told me he thought I had myasthenia gravis.
I had the nasal twang which I have had for more years than I can remember. I also had a little drooping of the eyelids. I could not believe it as I had been questioning docs for years and they would all tell me I didn't have MG or sjogrens.
Well, the immunologist also did a whole bunch of blood work and it turns out that I have extremely low t-cells. Like as low as an AIDS patient. This low cell count, however, is related to the autoimmune disease. I also have Bullous Pemphigoid and asthma.
This low t-cells count really explained all the infections I have had since the 1970's. He also diagnosed my Hashimotos and my titers were off the charts. I am entering my 6th year of IVIG as I can't have Imuran, etc due to the chance of getting bad infection. I just started Plaquenil this past summer and it has helped my energy level and decreased some of the bad swelling in my sinuses, nose and throat.
I will be visiting on occasion and am interesting in hearing about new treaments and other MG issues. I have never had a crisis for which I am extremely thankful. I have told doctors for years that I often felt like I would quit breathing. Now I know what that was all about. Be back later. gto

Would Chia seeds be a good part of this if they were sprouted. I use Chia seeds as a good source for Omega3 Fatty Acids; the sprout recipe sounds wonderful.

Have you ever tried natural nutritional plus Yogic support for muscle weakness/ fatigue or sensory loss. ? I am writing to inform me that Sprouted Mung ( Phaseolus aureus), Chana, Methi and Ajawain seeds are recommended as a powerful breakfast in patients with neuro-muscular diseases including MG.

You should eat sprouted cereals (Mung + Chana + Methi seed + Ajawain seeds). Unlike grains that have undergone processing, sprouted grains are filled with nutritious elements. They provide the best source of vitamins and minerals. Sprouted cereals / grains actually encourage good bacteria to thrive in the body and keep the colon clean. The quantity for one person is:-

Mung Dal (Phaseolus aureus) 2 teaspoon, Chana ( Cicer arietium), 1 teaspoon, Methi (fenugreek seeds) 1/2 teaspoon, Ajwain (Trachyspermum copticum) 1/4 teaspoon; Wash and soak this mixed grains overnight ... . Next day remove the excess water and cover it. After one day you can see sprouted cereal. The seeds will germinate. Add slices of fine chopped onion, tomato, coriander, ginger + black pepper and lime juice. You can add boiled potato also and eat with proper chewing. This is followed by a glass of fresh juice from any seasonally available fruit or you can drink a glass of fresh butter milk. It is powerful breakfast for MG patients.

Sprouted seeds are excellent food for all neuro-muscular disorders. They are high in enzymes and their minerals can easily be absorbed. Easy to sprout are Mung beans, brown lentils and fenugreek. If chewing is difficult, these may be juiced as well. Yogic breathing technique and Meditation are useful in the lasting relief from debilitating symptoms of MG.