It's been about 4 months since I stopped in here. I had a neuro visit back in May and they diagnoses me with Benign Twitches. I went home and began to think I had ALS. Well, I can rest assured that I know now that is not how ALS works. however I couldn't let the idea of why I twitch every day go. About 2 months ago I let go of my fear and I began searching again. That brought me back here. Here is my story.

I have a family history of autoimmune diseases. My mother has fibromayalgia, and my grandfather had MG. A little over one year ago I was diagnosed with being hypothyroid (was not given a causes, the Doc just said....sometimes this happens). I was sent on my merry way with levothyroxine to boost my thyroid. Then on good Friday of this year the whole left side of my face drooped down and became almost completly paralyzed. I was diagnosed with Bell's Palsy, no tests, just told that is what I have. I took prednisone for 3 weeks, and that was that. As soon as I stopped taking the prednisone for 1 week I began having tingling in my feet which would come and go, then the twitching started. I randomly twitch all over my body all day. 95% of the time I only notice it when sitting down and relaxing. They are very random, somedays are better than others. The worst area is in the same area where I had the Bell's Palsy. Now this never came from a doctor, but I have found a condition called peripheral nerve hyperexcitablility that matches my symptoms to a Tee. it's primary symptom is random twitching....with occasional tingling and cramps depending on the severity. I do get occasional cramps. The worst is in my lower back, and more rarely have some in my feet (got one yesterday). I have also had the tingling. According to an article in the oxford journal this is most likely autoimmune. And also in the article says that many people who experience these symptoms also have other autoimmune diseases like thyroid, and the most common one is MG. This is not to say that PHN is a symptom of MG, but rather that those who have this are more likely to develop MG.

The only other signs I think I could have are that I do have very very slight double visions (this is diagnosed by an eye doctor and he was unconcerned). I have enough strength in my eyes that I don't notice this 99% of the time. I have also experienced periods where my neck hasn't gotten so weak that I had trouble moving it, but if I yawn or frown the muscles violently tremor.

So here is where I am at. I have not had ANY testing for the causes of my thyroid issues, they never tested for the cause of the Bell's Palsy, and other than a quick nero exam back in May (which was only a clinical exam...reflexes and strength tests...no blood work or diagnostic tests) that has been the extent of their diagnosing. With my family history and all of these things I feel like my conitual twitching (for the last 4.5 months) has to be autoimmune related. I know this is long and I appreciate anyone who took the time to read. What should I do. The symptoms are annoying right now, but manageable. they don't stop me from doing anything. I know first hand what MG can do to a person. I loved my grandfather with all of my heart. I sitll wear his wedding ring to this day. He gave it to me before I got married. so I understand what you all go through. also undertand i have let go of the fear that I was experiencing, and now just want some answers. I would also like my wife to realize this is not "all in my head."

I know it stinks not knowing what is going on with your body. I hope it isn't something too serious.

Did anyone tell you to take methylcobalamin at the same time as the Pred during Bells Palsy? Doubt it. Many studies show that people recover much faster with B12. Any kind of peripheral nerve damage can be made better with higher doses of sublingual (under the tongue) B12.

What many doctors don't think about when someone has muscle twitching is the endocrine system. When electrolytes are off, for whatever reason, the body can have all sorts of problems. Hyper- or hypoparathyroidism can cause an imbalance in calcium and vitamin D, for example. Do you have a good internist? Can they run a comprehensive metabolic panel? That would include things like calcium, phosphorus, magnesium, potassium, sodium, chloride, kidney and liver functions, albumin, CO2, etc.

Vitamin D is a very common deficiency. It can cause all sorts of problems. And it is a blood test that doctors are getting more used to running due to how much it happens.

Sometimes it can be a drug causing the problem too. I wouldn't do the "synthetic" thyroid hormones. I use NatureThroid and really like it. It's made from pigs, so if you have any issues with that it wouldn't be a good alternative. Have they rechecked your thyroid (probably not since it doesn't sound like they did a thorough check to being with)? Did they run the thyroid antibodies to make sure it isn't an autoimmune attack on the thyroid?

I think it may be time for you to seek out an endocrinologist for a second opinion. If you can, find a private endocrinology group. Some endos are amazing and will be very thorough. Sometimes, like in an HMO, they do as few tests as possible.

Symptoms like the ones you are having are rarely all in your head. Bells Palsy often occurs in people with autoimmune diseases! You have to trust your instincts about your health. Maybe your wife should read up a bit on your symptoms and possible causes. Sometimes people pooh-pooh what they don't understand or don't want to deal with.

The other possibility is a rheumatology condition. A good internist can run some basic testing to rule in or out conditions.

I hope you will not get discouraged and keep trying to figure this out. I doubt it's "nothing" and you know your body best. If you can, write down every single little symptom you are having, when it started, etc. You would be amazed at how much we ignore about our health because we don't want to be sick! You may be surprised at what you see on that page of symptoms! I always do that when there is anything new and I'm not "getting it" yet. Like yesterday when I couldn't figure out why I had bumps popping up on my body. Who knew that food manufacturers would need to put GLUTEN in with tortilla chips that contain corn? So I had glutened myself and wasn't even immediately aware of it and I've had celiac disease for six years. I was hungry, damn it!

I think you need a doctor, or two, who will take your seriously. I hate when they throw drugs at a patient without thoroughly investigating what is going on. Oh, if you want to try the methyl-B12, I get mine at iherb.com.

I hope you can get some help. Please let us know how you are doing. Try not to be hard on yourself or your wife. Not knowing why something is going on can be hard for everyone to deal with. Maybe go catch a good comedy or do something else fun to temporarily relax your mind and immune system.

Annie

What I am trying to figure out is should I bother with more testing at this point, or wait to see if it gets worse. Again my grandfather did have MG, and my mother has fibro. Here are my cuurent symptoms.

1) Random muscle twitching (neuro called them benign twitches). I have since read from an oxford journal that this is actually called peripheral nerve hyperexcitability and it has a strong realtionship to autoimmune especially MG.

2) Lump in the throat feeling. It went away for a couple of weeks, but now it is back after having a decent sinus infection. I have read a few people with this symptom on here.

3) Double vision (not bad) I can correct for it, and only notice it if I let me eyes relax.

4) Hypothyroid. taking levothyroxine for it.

5) Had Bell's Palsy. I am recovered from that though. The only side effects are that when i yawn my left eye closes, and I have more twitching in that area than any place else.

6) Cramps. I get horrible lower back cramps about once every couple of months. They are very painful. I also rarely get them in my feet.

7) If I lift something heavy with my hand I have to physically move my fingers with the other hand to get the muscles to relax.

8) Fatigue is a problem also, but they told me that was from the thyroid. I get very tired in the middle of the day.

9) At the end of the day if I try to frown the muscles in my neck violently tremor, but they are fine earlier in the day and this doesn't happen.

10) I don't think I have weakness in any limbs. I can lift my 4 year old no problem and carry him up the steps. I don't get short of breath doing it either.

11) I have had some problems with feeling like food gets stuck in my throat, but I just figured it was dry. If I take a drink it goes right down.

Again I have had no blood tests for anything other than the thyroid which was just done in June. I don't have a cause for the thyroid problems either....just told sometimes this happens. My fear level with this is mostly gone. I would just like to know if this is MG or something else autoimmune. I am only 31 (turn 32 in november), so I know I am young for MG. but it just seems like the dots are connected to me.

Well it seems lots are reading my thread, but only Annie has responded. Does that mean you all think I am over reacting?

Well the only thing I can add is my blood work for antibodies last month came back negative then 2 weeks ago they did it again (different doctor) and it came back VERY HIGH. I am on Mestinon but it is doing nothing for my severe double vision. My new Neuro said my hip flexor muscles were weak. To test this from a sitting position you raise up your knee and see how easy someone can push it to the floor. I get the rest of my blood work (12 vials) from Mayo next week.
Mike

Overreacting? HARDLY!! Don't get discouraged, lots of ppl don't "get" this disease, hopefully someday they'll understand....

Well Mike, my abs are always negative & neuros can demonstrate clinical pblms, but the tests just don't confirm it....I also have very weak hip flexors & I can't walk any distance...fatigue is overwhelming....have to just keep on truckin'....

Dottie

Don't let the lack of response get to you! It's been fairly quiet around here lately. Even for me, it can be overwhelming just to deal with the health issues I have, let alone trying to help others. So many people with MG are worn out on a daily basis, so keep that in mind too.

I will again encourage you to ask for some basic tests to be done, like a chem panel. Have they run the acetylcholine receptor antibody panel (binding, modulating and blocking antibodies) and the MuSK antibody? If not, they should. An IgG deficiency could make a normally positive result appear negative.

Dose your double vision go away when you close one eye or not? MG double vision is called "binocular" double vision and it goes away when one eye is closed.

I would NOT accept an explanation from a doctor that "it can happen" for the reason you have a thyroid problem. It could be so much more than that. So many GOOD doctors do more tests, like thyroid antibodies and sometimes an ultrasound of the thyroid gland. Do you have copies of your test results? If not, please get them!!!

Even if you have residual nerve damage from Bells, B12 will still help heal any leftover peripheral nerve damage. You can't get too much of that vitamin. Without it, people die. It's a very significant vitamin.

I honestly believe you should consult with an endocrinologist. One other thing that happens towards the end of the day is that cortisol runs out. Sure, you could have MG and that tends to get worse towards the end of the day too. But you really should get a second opinion on your thyroid situation.

I am trying to help but that's all any of us can do. The rest is up to you and your doctors. I hope you will get help and figure this out soon.

Annie

Thanks for the help. I do take a b complex everyday since I had the bells palsy, and also take a multi vitiman. The residuals don't bother me much. After reading posts about others who were diagnosed with bells to find out later it was MG, mine does not sound like their. Mine responded to prednisone, and was gone withing 6 weeks. That was almost 4 months ago, and it has not come back. I suppose if it were MG it would have come back. Also they talked about not being to open their eyes. My problem was I couldn't close my eye. I also had no movement on that whole side of my face. As for my double vision, yes it does clear if I cover one eye. a regular eye doctor saw this and was unconcerned. He said it was VERY VERY mild. It has never gotten worse than that. And like I said I don't notice it unless I want to. If I sit here right now and allow my eyes to relax everything goes double, but I am also not straining to see without allowing to relax. it's mild enough that I can compensate. Also my mother has this, along with her sister, and my niece. None of us have been diagnosed with MG. Perhaps this is all just PNHE and it was an autimmune response to what ever triggered the Bell's.

I sure hope to get some answers next week. My mom along with 2 of her sisters had MG. If I could get this double vision cleared up, I would be happy. Of course I'm retired so work is not required so I can rest when I need to.

Hi, no I don't think you're over reacting, but at the moment I'm struggling with my MG, and reading and responding to long posts its hard, I find it hard to concentrate :-)

32 is not too young for MG, I was 30, had my life all planned out, sheesh did it change that.

I'm sorry your wife thinks its all in your head, that must be hard for you, wish I had some suggestions but I'm single, all I had to deal with was a very supportive dog.

I agree with Annie, get some more basic tests done, including an ach receptor antibody panel, maybe find a Dr who is a bit more supportive, yes I know this can be hard, I've been there, and am in the midst of changing my General Practioner.

Please don't think we don't care if we don't respond, sometimes we just don't have the muscle strength or the emotional strength to reply, doesn't mean we don't care, we just are a bit tired :-)
take care
Kate