Feel free to use this sticky thread to post your story of diagnosis, health history & treatments.

Post any questions or topics to discuss in the main discussion area..

Here is the link to make a new thread for discussion-
https://www.neurotalk.org/newthread....newthread&f=77

My story: I have Graves' disease, which has been in and out of remission for ten years. I take PTU when it flairs up. In the fall of 2009, my five youngest kids got H1N1. I took care of them for two weeks, but never got it myself. Towards the end of the two weeks, I inexplicably collapsed--I just became too weak to hold myself up, and ended up on the floor.

After that, I started losing my balance a few times a day while walking. I also noticed occasional weakness in my arms and legs. My neck became so weak that holding up my head was at times difficult.

By about January, I was having trouble walking at times. My main symptom is a weakness in the muscles of my side and back, which makes it hard to hold myself upright from the waist up. During a bad spell, usually late in the evening, I also have weak legs.

I am not diagnosed. My MRIs are normal. My blood tests are all normal--no antibodies that they can find. My SFEMG came back slightly abnormal, but not enough to diagnose me with MG. That's because the doctor only tested muscles in my legs, which are only slightly affected. He says he can't test the weak muscles in my sides and back because he doesn't have numbers for what's normal for those.

I am on Mestinon, 60mg every three hours while awake. Sometimes I think it helps, sometimes I don't. The last time I saw my neuro, I was in the middle of a very good spell, almost a remission, that lasted a month. Since I have no diagnosis, and I was doing OK, he didn't want to start me on immunosuppressants. Now that I am getting worse--having trouble walking at all for large parts of the day--I hope he will be willing to try something more than the Mestinon.

I would love to hear from anyone who has my atypical symptom: weakness in the sides and lower back that makes them tilt back and forth from the waist up when they try to walk.

Abby

I'm updating my last post to this sticky "your diagnosis" thread. I see I'm the only one here, but I think this is a good thing to do. I have found it helpful to read other people's stories, and get a sense of the variety of ways MG can affect you.

I am now diagnosed. I had three antibodies blood tests, all negative, and three SFEMGs. The first was "borderline" and the second was mildly abnormal. But what gave me the diagnosis was the third one, which was a stimulated SFEMG on my face (even though I have only very mild facial symptoms). This was done by a specialist in Boston. I am going to start Imuran soon.

Abby

Hi all
Lately I have been experiencing weakness in my legs that is accompanied by the intense feeling of a sense of my muscle just having wood in them. I loose my balance and fall into the wall. my upper body is ok-not near as bad and it catches me when i am falling. I feel so weak and and always exhausted. My cervical and brain mri were unremarkable. I am scared at how fast this is progressing. It came on so fast. What are your thoughts? I was originally diagnosed with Fibro due to the fatigue and always being tender. have any of you had this before?

I am having a lot of trouble with balance, muscle sensation, brain fog, memory, exhaustion. I dont know what to do anymore

There seem to be a great deal of autoimmune disorders on my mom's side of the family. 2 aunts (and possibly an uncle) have MG and my mom has Lupus. I ended up with Graves Disease and MG.

After an SFEMG test in 2001, the neurologist decided I had Occular MG and gave me Mestinon. My blood test turned up negative.

The neuro didn't say much, perhaps because she was behind and perhaps because she was ill herself. Anyways, I didn't think anything of it and got my future scripts from my GP. My family isn't that close - especially when it comes to discussing diseases.

A few years later, I thought it might be a good idea to visit the same neuro for a check up, because I was experiencing some weakness in my extremities. Neuro said everything was fine and to increase the Mestinon as needed.

For about 5 years in all, I didn't realize it, but I had been making allowances for things like the long walks I used to take with my husband and neighbour in the evenings and choosing hamburger over steak - because filet was too tough.

In 2006, I started to experience breathing problems and woke up in neuro ICU of the local teaching hospital. Dr's did a course of plasmapharesis and finally removed the breathing tubes and IV's about 5 days later. According to the Endocrinologist, my thyroid levels were dangerously low.

YEARS LATER, I would find out that the Magnesium I was taking for muscle spasms was binding to the synthroid and weakening its efficacy. That, and the MG saw an opportunity to play havoc with my body. To this day, my neuro still believes that I quit taking my synthroid(???).

Anyways, for about 2 yrs, I was in that "Maybe she does / Maybe she doesn't" category that many of us have had to endure. Most times, I was treated with IVIG, Solumedrol, etc. FINALLY, after a Tensilon test, I got re-diagnosed!

Since I don't present in a text book manner, I was given a T/F psychological test that showed I also have CONVERSION DISORDER. Apparently, if you admit that you were sexually abused as a child - your "inner child" can manifest physical disorders to cover up for mental illness.

I was even told I had "drug seeking tendencies" and that I go for the "big guns" instead of a tylenol.

This was brought up, when I went to the ER for burning pain and swelling in my hands and fingers. Try to get ahold of any medical person on a Friday afternoon! None of the drugs I had at home were doing the trick - hence the "big guns" (Percocet). Later, I found out that I have osteoarthritis in my wrists and, were it not for my rheumatologist sending me for a bone scan, I'd be even sicker (mentally) than they first thought!

In the meantime, for MG I'm taking Mestinon 60mg x 3, Mestinon 180SR at night, 200mg Imuran & Prednisone (15mg alternating to 5mg every other day). I take a whole host of other drugs, as well.

As long as I take things easy and rest before a planned day out, I'm okay. The stress part can be tough to handle, but I seem to manage okay. It's only when I overdo it that I get into trouble.

My neuro now says that if I have trouble swallowing, I should go her hosp right away. Yeah - Like that'll EVER happen!

Sorry for the long winded story
Swallow123

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