I will get back to respond to some of your other replies. I want to tell everyone though how much it means to me that you have all responded to me with so much compassion and caring.

An update on the Mestinon: I caved this morning and took 30 mg. I noticed that my arms were really weak and burning when I was holding the newspaper up to read. I also had a revelation that sort of put this in perspective for me. I'm not sure I can explain, but I'll try.

OK, since I've been on the Mestinon (somewhere around 6 weeks I think), I haven't had that pure exhaustion or the feeling that I can't talk or breath. I have been able to do more than I was able to in the past.

I think the doctor just messed with my mind. He made me doubt myself as to whether I'm really sick. I know that I am. I can go back and read my blog and see and remember how bad I was in the past.

I don't want to take the chance of not being able to breath just to prove a point to this neuro who probably doesn't care anyway.

I hope I've made some sense. It was a long night here.

Thanks again.

Shalynn, Do you have a medical alert card? If not, please consider putting one together. If your MG, or the "mystery" illness you have gets worse, you need to have basic information with you.

Name, emergency contact info, social security #, insurance numbers, doctor names and numbers, diseases and associated meds, etc. I also put info about drugs that could make MG worse.

FYI.

Yes Shaylun perfect sense. I feel I was just where you are at a couple times. I started out strong and clear but as the tests came back negative and it became clear that my clear symtpms and mestinon use made no case for them things changed. They did where me down. I thought maybe one more neuro will be the one. That sure hasnt been the case. Or the pulmo who got so scared about my health after I did the pulm stress test resulting in him getting me right in to Mayo.

Much of the time I DO know that "I know my body." You are the expert in your body. I hope you can hold on to that nomatter what.

Annie59

Annie,
Thank you for your kind words and compassion.

You are so right! What happens to me is that I am taken so off guard with those odd questions that I get flustered and say nothing! Also, it gets me so upset that I blank out for the rest of the visit, neglecting to say things I meant to say!

I agree with you. In fact, unless they are a neuropsychologist they have no business diagnosing a patient with any psychological illness. In my case, I think the neuro believes that something is wrong, but he hinted that there might be a psych component to it. Ya think so??? Try being sick for six years and not knowing why. That would cause anyone to be a little mentally ill. I am on an AD and I have had trouble with anxiety in the past, but I am one of the most mentally stable person I know because I have realized when I needed help and sought out the treatment. It's as if these doctors think that a patient can't have both a physical and a mental illness at the same time. Or, to confuse them even more, a patient can't possibly have more than one illness at a time!!

I'm working on the ego building. I need to really start keeping a symptom diary. I do have the one pic I posted here of my eyes before and after Mestinon, it was shortly after I started posting here regularly. I made a video today of my wacky eye movements.

This is a very good idea and it makes a lot of sense! I know I def need to see a neuroop...the closest one is about two or three hours away. But I'm sure it would be worth it. A pulmonologist would be helpful if they would actually do the correct tests. I had a PFT which ordered by my PCP that showed asthma. But, I really need more extensive tests from what I've read. Especially ones done after exercising.

I did have a muscle biopsy done in Indianapolis last year. It was a frozen biopsy though. It showed some abnormalities, but nothing specific to any disease. One thing it showed was type 2 atrophy. I know this can be caused by disuse (which I don't think I fit that category), but it can also be caused by other diseases. Yesterday I read somewhere that type 2 atrophy can be caused by MG. Interesting. Oh, I don't think I had a very extensive exam of my muscle tissue either. No electron microscopy, just the basics if I'm remembering correctly.


Wonderland. That makes sense. Yes our Alice is a very good doctor.

I agree. But, what I don't get is how he could one minute say I could have MG with the tests being negative, but that he wouldn't treat me unless the tests were positive. This must mean that he doesn't really believe that you can have negative tests and have MG, or that he thinks, in my case, there is something else going on and he doesn't want to deal with it. I think there is probably a lot about MG that they don't know.

I did ask the "bad neuro" and he said I could quit cold turkey. So, that makes me wonder if he thinks that it didn't matter since I may have only been imagining that it was helping me. I'm confusing myself. I did start back on it again as I was noticing more weakness. Last night after dinner, I had to go straight to bed I was so weak just from eating.I ended up sleeping for two hours!

I think what we need is more neuros who will think outside the box. If you look at the MGF website it actually states somewhere that the clinical exam should probably take precedence over negative lab tests.

I am a very strong person. I'm a fighter and I know that there is something wrong. I have a PCP and a neuro in Indy who believe that too. I need to probably have regular appointments set up with them even if it's just for the mental health boost. I do see my PCP in Feb, but am going to try and get in before the end of the year.

Very Funny! And sad, really.

Thanks!!!!

I appreciate the time that you took to write all of this. You are helping me so much!

Shari,

I'm sooo glad you caved. That doesn't show weakness at all, a person can't struggle with an unknown illness for several years and be called weak. It shows a very strong, empowered person who only wants answers, so she can continue to fight the good fight!!

I can't begin to tell you how worried about you I was the last few days!!
Hope your starting to feel a little stronger,

Rachel

[QUOTE=alice md;725263]I'm sure that had to be difficult for you. I think those who aren't in the medical profession tend to think that doctor's automatically have it easier when they are sick, but I can see where that wouldn't necessarily be the case.

Why are there so many doctors who refuse to do this? Is it an ego thing? Is it something they weren't taught in medical school?


I bet that was an experience you will never forget either. You have to wonder what would have happened to that patient had the diagnosis not been made when it was made? That very thing is what scares me so much of not having a 100% diagnosis. How bad do I have to get before I get a diagnosis? My PCP said he is sure that is what I have. But, I get the impression that his diagnosis doesn't really count.



This is exactly what I have done. I have probably seen close to a dozen neuros. I think the danger in this is being labeled a doctor shopper. I am not looking for a neuro to give me a diagnosis that "I want" I am looking for a neuro to work and give me a diagnosis that I have.

Thanks so much for your insight and for taking the time to respond to my post.

Thanks so much for your reply. Your neuro sounds like a wonderful doctor. You know, I asked my PCP something similar, I asked him if his wife was having all of my symptoms would he want her on Mestinon? He said absolutely. He is a very caring doctor.

My neuro up in Indy is a good doctor too. I'm just going to stick with her. I guess I was getting too greedy to think I could find a neuro here in my home town that would help me.

So was your SFEMG positive?

Merry Christmas to you too! Thanks again.

Rachel, That's so sweet of you to be worried about me. It means a lot. As I said before, I am not giving up. I'm working on a plan of action as we speak. lol

TTYL!

Thank you Shalynn for this message. Spending so so much time alone it is as to be expected too much and the lid blows. If it didnt I'd end up with a heart attack.

This is one of the hardest things I have ever gone thru. When I was young and going thru a divorce it was horrible esp for my kids but I think when younger I was less aware.

I came from a somewhat tough place as a kid so I didnt expect much. I guess maybe I have come a far distance in that I have little understanding of a person who goes into a field to care for people that are ill and treat them poorly if not out right disgracefully!

Annie59

I think you have done (and are doing) the right thing. as long as you do not fit any known "box" there will be those that will conveniently label you as something any how and you really have no control over that, so don't worry about it. just do what you think is right. I always say that I like everyone, I am bound to make some mistakes, but I want to make my own mistakes not someone else's.

by the way, when you come to think about it, what's so bad about being a doctor shopper? if you want to buy a car, you will probably seek the best car-dealer, learn as much as you can about the different cars you can afford, consult friends and family what is the best, safest, most reliable car.

why shouldn't you do do the same, when it comes to your own health.

would anyone judge you for not buying the first car from the first car-dealer (who you could clearly sense was trying to sell you a cheap car at a ridiculously high price)? no, they would say how smart you are for not falling into his trap. so why should you be ready to "buy" the diagnosis a non-caring arrogant physician is trying to "sell" you or the treatment he has pulled out of his sleeve without thinking about the potential risks?

I can tell you that are some excellent and even outstanding physicians out there, and some I would not even buy a used car from. and many in-between. so why shouldn't you try to get the best?

and I think you should be looking for a neuro (or other physicians as needed) that will work with you, to find the best way to manage your illness. what matters is not the diagnosis, but the actual management. finding the right diagnosis is only one step in that process, and clearly not enough.