Welcome to NT ! Lots of wonderful caring people here

I truly understand your frustration with everything you've said!
I'm sorry that I'm not very familiar with your particular condidtion.......but would recommend taking with you to your appt any previous testing you've had done.

You'll get better feedback from folks who know more about your condition.
I just wanted to stop by and give you a because I know all too well how frustrating it is trying to get people to really LISTEN to what you are saying!

My prayer is that your current Neuro will take a good long look at your history of this illness and the tests you've already had. He needs to HEAR your frustration and what this is doing to your life......rather than just speculating from test results. REAL doctors LISTEN to their patients!!

Truly Caring
Rae

Hi Jaimee,
Welcome! Many of us can relate to the anxiety your feeling regarding your upcoming appt. Consider having your significant other or a close friend or relative accompany you to your appointment. It's good to have another set of ears to hear things that you may miss, and to help relay important information that you might forget. And it's great to have a "note-taker."

I wish you the best with your appointment!

Thanks guys!
Well I'm not sure about the nausea. It doesn't happen often. Perhaps it is low stomach acid or something. That is definitely not my main concern.

After I had my fourth child I was diagnosed with Bell's Palsy. My eyelid and mouth droop were not noticable to anyone else, but it was so bothersome to me. It felt like I had tiny weights attached to the corner of my eye and mouth. They were very heavy and felt better in the morning and got worse as the day wore on. It lasted for about 2 weeks and then pretty much went away.

It was about a year later when I was working on sign language with my 2 yr old that I noticed I couldn't tighten my left fist as tightly as my right. I thought it was weird, but didn't really worry about it. A week later is when the bizarre waking up without the use of my left side happened. It was so strange. I could walk, but I dragged my left leg and had a hard time doing anything with my arm. It spread to include my right side by the next day and then a few days later, both arms were driving me nuts. I felt like someone had laid a lead blanket across both forearms. I couldn't wash or dry my hair or shave my legs... It was horrible. And I hesitate to use the word "pain" but it can be almost painful. I describe it like when you are lifting weights and you get to that last repetition and you want to just hold it there and get your maximum workout for that last moment... that feeling... sort of almost a burning, overuse of your muscles feeling. Anyway, at the time (this was 3 yrs ago) the Dr had no clue what was going on, I called him frantic over the weekend when my arms started like that (I had already had a head and neck CT) and he said I don't think this will help but I'll call you in some prednisone and we'll see what happens. Oh, it was marvelous! I felt so much better that same day after starting the prednisone. It didn't make it all go away, but the "pain" was gone almost instantly and most of my other symptoms improved rapidly as well. Over the course of 6 weeks it gradually subsided and though I felt weaker overall than I had beforehand, I felt much better for a time after that.

I've had probably 3 more severe episodes like that since that time. Periods of weeks at a time like that. But I have milder versions of those same symptoms almost constantly. Sometimes I will go a few months and feel pretty normal! I love those times. Those are times I can exercise lightly, get all my housework done, pick up my 3yr old in my arms... Normal stuff! But then there's the rest of my life. Not so great. Seems like every time I get a cold or the flu or even allergies... it just sets off whatever this is and it takes so so long to get back to normal. And sometimes it just seems like I get to a "new normal" where I know I am stronger, but definitely not as strong as I was and it just stays at that level for awhile.

I have had episodes of brief choking. I get slurred speech as well when I am having an "episode." My neck frequently bothers me. I can't even really explain that... I used to think it was a fullness feeling in my neck, but it feels better if I bend my head down forward, so I think it may just be that it is week and arching backward? Seems like I go through times where I cough alot in the evening and my voice will be hoarse. This may sound stupid and maybe it has nothing to do with anything, but I sing, and when I'm not feeling well my singing voice is weird... nasal... and I feel like I can't hold my vibrato or make my voice full from my gut like I normally can...

I also have vision issues off an on. Mainly difficulty focusing. I just don't read much when I'm not feeling well. I have had trouble driving as well at times because I will think I see a car backing up in a parking lot, but it's actually not... I think that's one reason I thought there was something related to my equilibrium going on when this first started. I'm just not sure anymore.

I think I will try that eye test at home. I am curious. My Neuro already has a detailed record of everything that has happened because she is the same one I went to 2yrs ago when I pursued a diagnosis of SOMETHING the last time! So hopefully that will be helpful. She diagnosed me with hemiplegic migraine (w/o head pain) then and put me on Topomax (an antiseizure med) and it made me so much worse that I stopped it after a month and never went back. My appt. this time is in the late afternoon. Oh and she has done a head and neck CT but not one specifically for my chest... Will they do that do you think? or can you see the thymus on a neck CT?

I think everybody was confused that last time around because it does seem like my symptoms are all willy nilly with the perceived vertigo and balance issues... I'm just starting to wonder if maybe I misinterpret those things and maybe those symptoms that seem to not match might be rooted in something else...

So does anybody know if the antibodies will show up regardless of how good/bad I'm feeling at present? I was just curious if it is only accurate when I am at my worst or if it remains pretty much constant in your system either way?

Hello!

With the exception of the nausea and possibly the pain, it sounds like you have MG.

All of these you described are things I have had and are definite symptoms of MG: eyelid and mouth droop with heavy feeling, hand and arm and leg and neck weakness, choking, slurred and nasal speach, vision problems. As far as I know these are classic symptoms.

Pain and balance problems are not directly associated with MG, but can be caused by weak muscles. Often I strain my muscles because they are weak and then later they hurt, but this pain is not directly caused by MG.

Make a list of your symptoms to bring to the doctor.

There are lots of supportive people here. Let us know how you are doing.

Well. I went to my appt today. Pretty much waited for 2 hrs just to go in and be told what tests she's ordering. She's checking potassium, magnesium, calcium, thyroid, acetylcholine antibodies and head/neck MRI. I have to go back in the morning to have the bloodwork done because the blood lady had already gone home by the time I got out.

She said she didn't think it would be MG because I don't wake up feeling "normal" in the morning and then just get worse toward the end of the day? I don't know. My mom (a nurse) said it doesn't always present that way and that it can be normal to have periods of worse/better that can last for weeks at a time like I do. Who knows?

The Dr even said something about the possibility of a "lump diagnosis" Fibromyalgia for when they don't know exactly what's going on... I don't know about anyone else, but I don't want a "lump diagnosis." Especially for a pain disorder when I rarely have any pain! Argh. I'm a mite bit frustrated right now.

Hi Jamee,

I've met many MGers who have morning weakness. This is why they have time-release mestinon- so that the person can wake up feeling strong.

I have very bad morning weakness which mainly affects my tongue. My other areas of weakness do get worse as the day goes on, but my tongue seems to be my antibodies' main target of attack, and they like to do it all hours of the day and night lol...

I take one time-release tablet at night of 180mgs, and 60mgs every 2.5-3 hrs throughout the day.

I hope that you get answers to your problems as quickly as possible. Your doctor giving you a 'lump' diagnosis when she can't figure out what's really wrong with you seems irresponsible, to say the least. Sorry to say that, but I think that if the answer isn't under one rock, you keep turning all of them until you find it, rather than coming up with an invention like, 'Idon'tknowwhat'supwithyousoImadethiswordup' syndrome. It's obvious that this doctor feels that Fibro. isn't a real diagnosis, either, which is kinda interesting.

Good luck!
Nicky

Jaimee, Okay, here's a good thing to do. Sit down. Write down ALL of the symptoms you've had for the past however many years. Anything. Are you missing symptoms? Have you pooh-poohed them?

There are so many possibilities out there for what could be wrong. Celiac disease, for example, is often missed and can cause a boatload of problems. The most important thing is having a doctor who will have the "we'll figure this out together no matter what" attitude.

And it doesn't sound like they have done all the MG tests, so they can't really rule it out yet. Did you get copies of your test results? If not, do it.

I hope you get answers but don't expect them soon. Try to relax about the whole thing because stress is your enemy!

Annie

Jaimee - - I hear you on the 'lump diagnosis'. My GP first sent me to a rheumatologist who said (when the blood work came back) - nothing specific shows up ... but you either have CFS (chronic fatigue syndrome) or fibromyalgia. I can give you a script for Lyrica!!

I declined the script - declined to see the rheumy again - - and put my search for a dx off for about another year or so!! Then things got worse enough for me to open Pandora's box once again!!

Better results with neuro - - though the first one did a bunch of tests (none for MG) and referred me to another neuro!! I did go to another neuro - but not the one he was pushing!! Luckily, I got my dx really quickly with the second neuro....and have been on Mestinon ever since!

Sometimes it takes awhile, but there are good docs out there who will sift through all the info and test results. Just always trust your instincts about whether or not you are comfortable with the direction things are going - -and keep searching if necessary.

Good luck!
Sue

Jaime - no to muscle relaxers! They will make your vision so much worse! I had been given them for my fybromyalgia and all of a sudden my double vision was terrible. Had to wear my patch! My vision was blurred I was afraid to drive even short distances. Something else that will do the same thing is Lyrica. It doesn't do it to all who take it, but it did me. good luck.