Yesterday I saw my regular neurologist. I've been seeing him for over 3 years for severe migraines. Since 2005 I've had a lot of strange symptoms- rt hand tremors, loss of hand grip/movement, tingling in feet, weird tingling sensations all over my body, facial numbness/pain in face to the point of paralysis where I'm not able to open mouth to swallow/speak, migraines so severe that the IV treatment doesn't even effect it and they are now to the point where I'm at the last drug treatment to treat the migraines.

Since November of last year I started to have dizzy spells. The neuro told me they were related to the migraines. In January again I mentioned it- he told me the same thing. Then in March I had the worst migraine ever- but I saw his PA instead- and she sent me to a neurotologist and she also dx'd me with vertigo. The specialist dx'd me with MAV (migraine assicated vertigo). He sent me to PT who specializes in vestibular physical therapy. I've done the PT since May til July 3- to the second level- until it made me so bedridden and sick with the vertigo that I was not even able to move.

I have been severely nauseated, severe vertigo, blurry vision, problems swallowing, have asthma, continue to have really bad falls and run into things. My DH told me that I also have problems speaking. Since May, my body has just became severely limp, tired to the point where walking the dog 1/2 a block is impossible or going up the stairs is just unbearable.

Yesterday at my appointment I failed the eye exam and walking exam the neurologist told me. That is when he mentioned MG. I've never heard of it before. He told me that he would not discuss it with me unless I was dx'd with it/if the tests he ran next week would come back positive.

He is going to do an ENG, memory test and ran a blood test yesterday. I'm so tired of not knowing what is wrong. I asked him about the vertigo. He told me- it is an inner ear problem. Well, that is what the specialist told me too and is what he was treating me for. ugh! The regular neuro said he would send me to a dizzy clinic that specializes in vertigo- and I looked up that clinic and they 'treat vertigo the same way that the specialist treats- vertigo' where I'm currently at right now. I'm so upset, confused and frustrated. I'm tired of feeling horrible.

Then on top of things- I am not able to hardly eat anything. It is difficult to swallow a lot of food- and when I do eat, I get severely nauseated after eating. He told me that it looks like I've been eating well because I've gained 4 pounds since my visit in May- (he didn't look at the chart from my visit in June!) GRRRRR My body has not lost weight due to meds I take. No matter what I eat or don't eat- I don't lose weight. My metabolism is just screwed up. Trust me, I'm not hardly eating anything. I tried to tell him that- and he argued with me. My trust in doctors is basically gone.

I've been thru the mill with doctors and specialists. I've been told I'm a) crazy b) psychotic c) nuts d) it is all in your head 3) there is absolutely nothing wrong with you- your symptoms are just - a hypochondriac issue. UGH!

This is how I've lived the last 5 years. I'm tired of it all. Sick of doctors and the run around. Two MRI's- nothing there.

My twin sister has had thyroid problems. I've had mono two times when I was in high school. I have endometriosis. So I know there is autoimmune problems in my family. They still over look all of that. ugh! I've told them this no one listens to me.

Help!

Coffeegirl

That's a lot of icky symptoms I hope you get some answers from the blood test, EMG, etc.

I have migraines too and had a few bouts of vertigo. As far as I know, the vertigo does usually go away after some time. (At least for me & the other person I knew who had it intensely. It was months for us but then it did subside and go away.) For me and this other person, we were both helped by doing this at home treatment: google.com/search?q=epley+maneuver+instructions

wondergirl- I did the eply manuver. It didn't work at all. They did it two times in the office and my DH and I did it at home numerous times between visits. That is why I got sent to vestibular PT. The vestibular PT has made the vertigo so unbearible that I'd like to just go sit on a merry-go-round because it might make it all better- LOL!!! That way- I would just be able to spin and at least make some sense of the dizziness!

Coffeegirl

Coffeegirl,
At the same time that you get tested for MG, BE SURE and have your doctor run a blood test for Celiac Disease. It sounds like you might have more than one thing going on, which isn't uncommon with autoimmune diseases. Going on a gluten-free diet might help relieve some of your symptoms - a GF diet will "cure" Celiac Disease and might make some of your other ailments more bearable; however, it won't cure MG.

Here's a link to more information - if you have any questions, I was diagnosed with CD 2 years before my MG diagnosis, and my neurologist seems to think that may have helped make my MG symptoms less severe:
http://neurotalk.psychcentral.com/post8767-2.html

Hope this helps, and hope you get some answers soon!

Coffeegirl,

It is not all in your head, that is for sure. You are the one that knows how you feel, not the doctors.

The weakness could be MG but it does sound like you have something else going on. I don't think doctors really understand these autoimmune disorders very well, especially if your symptoms don't match what they "should" be.

I wonder if you have food allergies, or some kind of vitamin deficiency. I have allergies and if I eat the wrong foods I get similar symptoms as you described although not as severe. Maybe some of these new symptoms are due to the medications you are taking for the migraines. Just a few thoughts.

I hope you figure out what is going on.