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

Sue--I don't know. He was vague and I didn't press him on it.

There are no next steps, unless I get worse or my symptoms get more typical. He has given up. I could insist on being sent to Mayo, but he thinks that they wouldn't say anything different. He is _the_ specialist in neuromuscular diseases in my area (Providence, RI)--the top of the heap. He's the guy other people travel to see. So I'm at the end of the line.

Abby

Honey,

You just tell that doctor that it is YOUR body, and YOUR health, and that you want a second opinion. There isn't a doctor on the face of the planet who knows everything there is to know about ANY given disease. And frankly, some of the ones who have a reputation for being "THE" doctor that everyone goes to see can also, in many cases, be the ones who are firmly convinced that they know everything there is to know about their particular specialty.

It. Just. Ain't. So.

If you think that this is what you are looking at, then I would urge you to seek at least one other opinion. If the doctor that you are seeing now has a problem with that, then just tell him that whenever a car is in an accident, most insurance companies want to get AT LEAST 3 estimates before having any work done.

Your health is MUCH more important than any car.

MG is one of those diseases that manifests itself differently in each person who has it. What works for one patient may not work for another one. The presentation of the disease is as varied as the people that it affects. For a doctor to say that just because he/she hasn't ever seen it before doesn't necessarily mean that you don't have it.

For all your doctor may know, you might be his/her FIRST patient in that practice who has MG with ONLY the symptoms/test results that you have. A doctor who is humble enough to realize that he/she doesn't have all of the answers is a great doctor, indeed. You want to find a doctor who is open to ALL possibilities.

If nothing else, I would tell that particular doctor that the Mestinon is working for you, so if it's all the same, you would just like to continue taking it, diagnosis or no diagnosis. If your symptoms get worse, you can always go back and have more tests run in the future.

However, if it were me, I would definitely get that second opinion.....

Thanks, Teresa. I appreciate your indignation on my behalf! This is already my third opinion. This is the neurologist my old neurologist sent me to just to make sure I really had MG before he started me on the immunosuppressants. He's the MG specialist for the whole area. My next "second opinion" would be Mayo, which I certainly haven't ruled out.

He is happy to keep me on the Mestinon, and my prescription right now is for 180 pills a month, which is way more than I need--I take three or four a day.

I have an appointment in a couple of months, at my request, which I intend to keep even if nothing's different. The reason I'm being so passive about the whole thing is that at this point, I don't think I would want to go on the immunosuppressants even if he recommended them--because I was better for a while, and want to wait to see if my current relapse is going to last. I am not as sick as most of the people here. There is some justification at least for waiting to see how things develop before starting the big-guns drugs.

Thanks again for your concern. I really appreciate it.

Abby

Abby,
Hang in there. I certainly understand the frustration of seeing many neurologists, yet not able to obtain a definitive diagnosis. Do keep your appointment with your doctor, even if your symptoms have not drastically worsened.

I can't even count the number of neurologists I saw over a span of 7+ years, who couldn't really put all the pieces of the puzzle together, so would default to the status quo. It finally took a neurologist who recognized my atypical presentation AND recognized her discomfort with deciding a course of action without additional consultation. She encouraged me to be evaluated at Mayo and that was a positive experience.

I know here on the board people have had both good and bad experiences at Mayo, so being referred there is not always a guarantee that the medical mystery will be solved. But it often does help to have a fresh eyes on the subject. JMHO PM me if you want additional info on Mayo.

Cate

Thanks, Cate. Can you tell me about your atypical presentation? I'm seronegative, and the SFEMG was only mildly abnormal, because the muscles that the neuro tested are only mildly affected. My main problem is the weakness of my side and back muscles, which makes it (on a bad day) hard to walk because I can't hold myself upright from the waist up.

Abby

I was told that Mestinon also helps SOME fibromyalgia patients. Also Mestinon helps for autonomic dysfunction IF it's autoimmune based. It may help other things too but typically (IIRC) docs only know of it being used for MG. The fibro usage is still sort of experimental and certainly off-label.

Stupidly, there was a neuro who thought I was a hypochondriac. They often do immediately if you have a "fibro"/chronic fatigue diagnosis. I could tell even though he was still TRYING to be kind of nice about it. (At least he tried and didn't cut me off. But I found him to be too rigid in his thinking.) He wanted to be honest too and said that he's seen plenty of people who abuse Mestinon! Apparently some idiots want that weirdo lightheaded feel? That's one of the side effects I hate, I hate them all and cannot tolerate most medications. So, that's frustrating. I mean, I think docs should be aware and try to keep meds away from abusers, but I (and others) are trying to get help and those people make it harder on us.

Actually I'm guessing that people who don't need it get a different effect than I get. That's pretty desperate if they are having fun with Mestinon, can't they just have a beer? LOL.

Then of course some believe we are just getting a placebo effect, and don't really need it.

And I think there was something else I wanted to say. Oh well.

Coffeegirl, How is it going? Did you get results back? I once heard an MG expert say that it takes an average of one year for a man to be diagnosed with MG and it takes an average of 7 for a woman to be. Can you say sexism?

I'm not a good example because I discovered I had ptosis in 3-2000, was diagnosed in 2-2001 and have had MG my entire life (since 1958).

Some people get diagnosed right away, especially if they have obvious antibodies.

Sue, Patients with ALS, for example, can temporarily respond to Mestinon. In the long-term, CMS, LEMS and MG are the only ones that obviously and profoundly respond to Mestinon. That's why a clinical diagnosis is so important with MG. MG has a classic presentation, even if some people are "atypical." MG is still all about fatigable muscle weakness.

Coffeegirl, I hope you do get answers soon.

Annie

:mad:
Not that surprising :(