Time Length For DX
 

How long did it take for everyone to get your dx?

When your neuro/MD/etc. started questioning if it was MG then running tests?

The neuro is going to do an ENG tomorrow and ran blood work last Thursday. Unfortunately they won't be able to do the memory test until Sept. 9! :( For as rotten as I currently feel, I don't think I will be able to last that long for a dx to get any treatment or dx. My body is just completely shot.

Today I took my son to a doctors appt. Then came home did some computer search, had lunch with sons, watched some tv with sons, talked with them, sat down again, then tried to do some laundry and light house work. The laundry and housework only lasted a full 15 minutes til my body completely crashed on me. The nausea was so bad I literally could have thrown up but didn't and vertigo so bad I almost fell down the stairs. Then I went and sat down for another hour. Did absolutely nothing but sit with my dog on the couch doing nothing at all but cried. So sick of this.

I'm horrified. My voice is hoarce today and I'm having a difficult time breathing. That worries me due to having ashtma. I just want to feel better at least part of the day- is that too much to ask for?

ugh!

Coffeegirl

Sorry you've had such an awful day! It's one thing to feel crummy when you know why - -- and quite another when you don't!!

I waited about 3 years from when I first started investigating the symptoms with a PCP to when I got hooked up with my current neuro (who really, really gets it). There were stops and starts in my journey for a dx (cause like many here, I thought they thought I was nuts! - - so when the tests showed nothing....I just quit searching for awhile - - - til I couldn't stand it and started looking for answers all over again!!).

In my case, my current neuro did all the tests (which were mostly neg) - but dx'd me clinically (even before ordering the tests). She said it's easier if you can prove positive antibodies - but it wouldn't change her treatment plan. (I guess she was referring to insurance coverage? I don't really know.)

Anyway - don't give up. Keep searching til you find the right doc - be it neuro or PCP or whatever. I know it can get really discouraging - but you have to keep pushing for that dx. Keep good notes (and test results) and your determination. It will be worth it.

Hang in there - and let us know how tomorrow goes.
Sue

I was diagnosed within a couple of weeks. I went to the dr. with a droopy eye and within 2 weeks they ran many tests, MRIs, CT scans, etc. and called to say I had MG. I had a thymectomy within about 6 weeks.

For about 6 months before I had some weird pains and did terribly on a heart stress test (Couldn't breathe). So it turned out everything was related.

HEY Did you have a tumor in your thymus? Because I have heard of people that had the operation and did not have a tumor.

So I guess the answer is... depends on how many of the classic symptoms they can observe easily, how many positive test results you have, and how good the doc is.

Oh, and how long you wait in between seeing docs, if one is disappointing. I had a disappointment over a year ago, and I'm still unsure if I'm ready to spend time and money to see if another doc will diagnose me.

Not as much because of loss of time/money/effort. That matters but more because of the possibility of emotionally being let down or them even attacking me by saying I'm imagining things.

Thank you everyone for your help. It gives me some hope and help in the wondering phase of what on earth is going on and what to expect. I've been dealing with the sypmtom horror for the last 5 years. :( Been thru so many doctors and specialists that I really am beginning to think maybe truly- I am nuts!

I did flunk the eye exam and walking test- which made the neuro immediately think I have MG along with a lot of other symptoms- which I do have. Right now I'm so miserable I think I am simply going to explode into a million pieces if they don't do something soon. My body and mind cannot take much more- and the neuro and other neuro specilalist knows that.

Today at my appt. I am going to tell the neuro I need answers now- and if he does not help me I will go back to the other specialist and have him send the charts over. If he likes that or not. I frankly just do not care what he thinks at this point.

Today when I woke up I was so dizzy/vertigo that I could barely get out of bed to take the dog out to go potty. To do that, I have to go up/down the stairs. The energy to do that was beyond what I had in my system had. Taking a shower and getting dressed, doing hair/makeup- today, took a toll on me. This is the first time that has ever happened to me. I have so much fatigue today and vertigo. The Valium had better kick in soon!! :(

Ugh! Just want to be able to have enough energy to just brush my teeth. How sad is that!? :rolleyes:

Coffeegirl

Scrubbs, I did have a tumor on my thymus. That is why they decided to take it out. It was benign. It is kind of scary knowing that you are missing something that is the control center of your Immune System, but I think it was the right choice.

Coffeegirl, I hope you get some answers. I am with you on the tired part. I am constantly tired and want to nap all of the time. I am a teacher and have been off all summer, taking it pretty easy. I will have a rude awakening when school starts again.

You may want to ask your neurologist to let you do a trial of Mestinon. If you DON'T have MG, you won't be able to tolerate even the tiniest amount of it. All of my tests came back negative - my neuro even said that my eyelid wasn't as droopy as most of her other patients' eyelids were - but she went ahead and had me try the medication.

I started out with 30mg - no difference; felt fine. Three days later I tried 60mg - very slight difference; felt fine. After another 3 days, I tried 90mg - BIG difference; felt fine. And then 3 days after that, I tried 120mg - felt nauseous; started drooling excessively; felt dizzy and faint.

When I went back to see the Dr., I told her my experience, and also told her that I had started taking 90mg about every 4-5 hours, and could really tell the difference (even my eyelid looked and felt less droopy!). Well, that was enough for her to go ahead and make a positive Dx of MG - she said that she always waits for her patients to tell her how they did on the drug trial, and most of them do the same thing that I did (taking more once I found a dose that worked).

So it is entirely possible that you are one of those patients who tests negative, yet still has MG - and your symptoms are MUCH worse than mine were! If you think that you might have this disease, INSIST on being allowed to do a Mestinon trial. If you don't have MG, you'll know it immediately, because you won't be able to tolerate the medication. Remember, you are paying for a service, and you can always take your business elsewhere. In this economy, I don't think that any doctor wants to lose revenue....

My neurologist thinks I don't have MG, but keeps me on the Mestinon (I take 60 mg every three hours with no side effects). When we asked him if my tolerance of it (and the fact that it helps a lot) indicates that I have MG, he said no; he said that other diseases respond to it, too.

I'm not saying he's right--just that there's at least one neuro out there who would disagree with what Teresa says. Unfortunately, in my case at least, tolerance of Mestinon isn't enough to get a diagnosis. I wish it was, because I think I do have MG.

Abby

Abby,

What are the other diseases that respond to Mestinon? I'd love to know.

Just curious - -what are your doc's next steps to achieve a diagnosis for you?

Sue