Interesting that he says he puts more value on clinical results than lab results.

I feel that this is the biggest block to getting any kind of dx. If ya fail the lab you fail at being sick. They just can't seem to put 2 and 2 together.

I jokingly asked if my tongue could be EVP'ed. Unfortunatly, no. I sure wouldn't like that SFEMG done on my face, or tongue for that matter. It really was a awful test. Maybe the Tensilon test would be the most reliable after taking pred. Since it only works if you have MG, I haven't read anything about people failing that test to often. Anyone else?

I will be sure to do my homework on this one though. Making sure on how long to wait for blood test, after taking pred.

lois how many years ago where you dx'ed? Were they a neuro? Maybe a older guy that had seen this before?. Just seems that this disease is really not that hard to pin down. Its not like MS, were you have to wait years, after lots of crashes. I mean once you've had a major crash, and its really hard to get back to normal. If your muscle get weak after you climb 3 steps, you can't open a can of coffee, or how about walk 1/2 block without puffing. You think they could run all the test at once, and be done with it. Really, how hard it that? I know there are some people that fail these test as well, but just by looking at the work thats been done on lois and I makes you wonder hah !! Was the testing defective?

Oh well, will just carry on, thanks everyone, Patricia

OK I'm giving up on that MG blood test. Again not there.

Dr I saw today said that its probably is negitive and of no use anyway. I told him just because the test is negitive doesn't mean anything. GRRRRR so frustrating.

I did get him to refer me on to a immuneoligist/allergist. I need help to see if I have other food intolerances. Maybe this guy can help.

I'm begining to regret getting back on the dr merry go round. Oh well least I'm feeling better, just stay away from the drs. stay away from the drs.

Take care everyone, Patricia

Hi, Patricia! Sorry I'm just getting around to giving you a reply. I've been too busy to check my subcribed threads for new posts, and I think I must have overlooked the email notification of this one.
I was diagnosed in the mid-1970's. I went to my GP complaining of feeling tired and fatigued all of the time. He sent me for a sugar test to rule out diabetes or low blood sugar. When that came back normal, he set me up with an MG specialist in Indianapolis. My GP just happened to have another patient with MG, and had suspected MG from the beginning. The specialist diagnosed MG with a positive Tensilon, and varous strength tests, using machines that he had designed and had made to test the fatigability of the muscles. He was an older doctor, actually I think he retired in the 1980's.
How aggravating about the blood test.! Whether positive or negative, you have a right to know the results. And how can he say it was probably negative anyway. Has he seen the results?
Sometimes the ignorance of doctors, especially neuros, astonishes me.
Hugs,

Hi Patricia,
Threads like this some times scare the fuzz right off my toes. Prednisone is a very very difficult drug to wean off of. After 7 days the body is addicted/dependant upon it. Please please be careful, and google everything you can on Prednisone and what it can do to your body.
http://www.macalester.edu/psychology...ppression.html
http://prednisone.com/
read these for starter, please take care

Sorry computer related problems last week.

Thank-you all for your concerns, I am doing pretty good, knock on wood

I didn't do 7 days of pred, only did 6. This is how I did it. First day I did 25 mgs, then 25, then 25, the I started wiening. So 2 days of 10 then 1 of 5. This worked for me. I'm not indorsing it, but when you don't have a doc to look after you, well you look after yourself. It took me out of the crash, although, I did go out, and the next 3 days back n bed. The last couple of days I've been feeling good, well good as it gets, lest I'm not wasted.

I stopped the mestinon too. I really don't like the way it makes me feel after its worn off. I'm not sure if everyone has the same problems with the stuff, but I really love to hate this drug. Its so up and down. You feel like crap, take a pill get to the 2 hr mark feel good then at 3, I take this big breath and I look at the clock and now I'm going down. Then at 4 hrs I feel worse then when I started, and its a repeat of this. So I try not to take it and just slug around, if you know what I mean. If I'm feeling really bad then ok, but ahhh, hate it.

Anyhow, I'm waiting patiently now to see this immunolisgist/allergist and I pray that he knows more about proper blood testing. My cousin went to see him and she gave the thumbs-up that he was very good. She was just dx'ed with MS, but they suspect other immune problems.

Thank-you all for your support, Patricia

Patricia, I'm glad things went well for you with the Pred. As for your problems with the Mestinon, you might need to take it every 3 hours. How long have you been on Mestinon? I know your body can get adjusted to it to the point that it doesn't work as well any more, and you might need to suspend it for awhile so that it will work well again once you start it back up. Just an idea!!
Hugs,

Hi everyone.

Well I've been through some more testing, and I'm no futher ahead with a dx.

Seen the immunoligist/allergist, and he did tests for food allergies, although I told him that I don't get hives or breathing problems with these foods, he didn't get it. He didn't understand that some foods can cause neuro problems. I was wishing that he was up on this knowledge, unfortunatly we were on different pages.

I was able to get the MRI of my spine done last week, then off to the dumb neuro. Well nothing, other then I have ostioarthritis of my spine that is normal for a person of my age...........................hmmmmmm I'm 47. Apparently if you take 10 people off the street and MRI there spine it would look like mine. I have heard those exact words about 5 times from 5 different neuros, must be the first thing they memorize.

So the neuro has sent his recomendation that I see a neuro/psychiatrist, because he can't help me. As far as he can tell there is something neurological happening with me, but he has no idea what, or care to look for himself, easier to send me to someone else.

Anyhow, thats it. No treatment plan, no help on how to stop these crashes, and really fed up with the whole BS. I did go to the gp I'm seeing and asked just to see a psychiatrist, forget the neuro part, as far as I'm concerned the whole lot wasted there money going to school. all they can remember is the first part,.........if ya take 5 people off the street...........................

So, this is as all that I can do, there is no more testing for me, I have come to the end of testing for anything. I'm just a mystery and I have to learn to live with this. Which is really a hard pill to swallow, I have sorta learned to live my life slowly, but as for the future, I guess I get to be the old lady before I'm even old. IT SUCKS.............. Patricia

P.S. I've asked this before, hopefully someone can answer it. But has anyone thought that mestinon makes them depressed or grumpy or alter there mood in any way. My gp said that this is true, but I really don't think he knew, I think that that he doesn't want me to take the stuff. I would like to take it, but find that it really screws with my thinking. Thanks, Patricia

Patricia, sorry you've had to have another go round of disappointment. I know exactly how you feel, kind of abandoned by the doctors, which is a bad feeling, considering that they are the ones who are supposed to figure out what is wrong with us and then fix it.
Speaking of Mestinon, I've never found that it affected my mood in any way at all. I do get 'brain fog', but that seems to be a product of the MG rather than the Mestinon. I would think the pred is the more likely culprit to be messing up your mind.
Hope things improve for you.
Hugs,

Thanks lois, but even before I took pred I had this symptom. Its really wierd, maybe its because of the up and down feeling, my mind really hates it.

Patricia, Just thought I would mention this for what it's worth. I've just figured out I'm gluten sensitive. My GP did the blood test for celiac, which I kind of figured I would have, since it's an autoimmune disease, too, and I've already had Graves' Disease, and MG. But it came back negative. But I've been staying faithfully on the gluten free diet, and was amazed to see how much it has helped the MG. Or rather, how much of the fatigue I was ascribing to MG was probably coming from the gluten sensitivity. It might pay you to just try a gluten free diet for a few days to see if it helps you at all, especially if you have any of the symptoms associated with gluten sensitivity.
I'm still elated over the change I got from going gluten free. I hope it lasts for me, since I feel like it is helping me to get a life back!
Hugs,