Hi everyone - I hope you are all doing ok today

I have another question for you all - I'm sorry for my continual curiosity! As I said on my previous post (thank you for all of your replies, I was amazed by some of your stories!) I have found all of your stories of your struggles for diagnosis, treatment and the scrutuny you have all faced with various Doctors and agencies pretty heartbreaking....and unfortunately have had similar experiences myself! I have to say your persistence through your trials has inspired and encouraged me to seek a second opinion despite wanting to just curl up and hope this all just went away! I admire the unfaltering strength of each of you and thank you, because without you I may have given up....again!

I may still not get a diagnosis this time but It has left me wondering if any of you have considered taking action for misdiagnosis or the poor treatment you have received? I don't know what options there are in these cases and whether a formal complaint can be made for a disease so hard to diagnose? I know there will be cases where you requested a test the Dr refused and when another Dr performed it you were ultimately diagnosed so is that considered negligence....or proof Doctors are only human? Do you feel there is a duty to prevent another patient from having the same problem or do you think making mistakes are a part of life....even for a Doctor?

Thanks again for your thoughts and input

Have you been to a neuromuscular specialist at a big teaching hospital or an MDA clinic? I think I would still be spinning my wheels if I went to a local neurologist, most of whom have never seen an MG patient because it is so rare. If you are close to one of the Mayo clinics, Cleveland Clinic or John Hopkins, a lot of MGers have gone there and have had good results. I know it is hard, but do try to persist. MG not properly diagnosed and treated can be very risky.

kathie

Did they start you on any meds yet? Did you get the results of the SFemg? The process is very slow for diagnosis, I share your frustration. I am 6 months after diagnosis, my MG is still not stable in fact it is worse. I have not not found a therapeutic med strategy.

I still think thymectomy stats suggests thymectomy is the best route and hope to have one soon. My next neuro visit is in 3 weeks. Did they do a scan of your thymus. Often MGers have hyperplasia or enlargement even if they do not find a nodule. Stats show most MGer have a benefit from a thymectomy. Also make sure they test your thyroid. A lot of Mgers have thyroid and MG and they make each other worse.

kathie

Hi Kathie - yes, I finally got yo see a neuromuscular specialist at a teaching hospital, I am in the Uk but he takes national referrals for suspected MG so hopefully I got to the right place (I Pray that I have!) I am 10 days into an agonizing 2-3 month wait for my nerve/muscle tests and just hope he was exaggerating the waiting list! Haha!! I'm still not getting any medication, he said that he didn't want to prescribe without confirming MG due to the side effects and risks the medication has - which I understand. I had a chest x-ray with my previous neuro which was clear but I don't know how accurate they are for monitoring the thymus compared to CT and MRI scans??

I am sorry you are still struggling, it's just not fair is it?! You finally get a diagnosis for the meds not to work?! I have read good things about Thymectomy too but operations are scary! I hope you get what you need to feel better very soon - 3 weeks is a long time to wait for your next appointment when you are waiting and needing help! Will be keeping everything crossed for you!

They told me there would be a 8 month wait for the SFemg. As my symptoms got worse and I started falling, I kept calling the doctor and the SFEMG people. They bumped up my SFEMG to the next month and the doctor put me on mestinon once I started falling. If I were you, I would keep calling, very politely, and tell them about your concern of the progress of your symptoms and that you would take the first cancellation at a moments notice. That worked for me.

Good luck
kathie

I get why you are frustrated. I know for myself, I was not diagnosed properly two times. I have a sister with MG, so I knew what symptoms of MG was. I first had a bit of blurred vision late at night. (Didn't think much of it at first). The next morning I'm good. Then I had a real late day at work, I'm in a conference room with a dozen other people and my left eyelid just can't stay open. It droops. I could only keep it open with my finger to support it. The next day I'm fine again. I realize at that point, that I had MG (or at least I thought I did). I went to the Dr's (General Practioner) I told her about my sister and my symptoms and told her I thought I had MG. Well, no blood test authorized. She gave me steroids (Medrol dose pack if I recall). Then had some kind of tests on my head (catscan\mri?) I'm good for about 3 months then symptoms return. I go again, see a different Dr and told her about the symptoms, the negative head scans etc. Told her I thought it was MG due to my sister's case etc. Again, left with steroids and also more tests (this time chest xrays\scans). Once again about 3 months later I go in again to Dr, this time they give me the blood test for MG and then I was diagnosed.

Although I'm frustrated with the Dr, I still understand to some point their side. It's not like being an auto mechanic where the mechanic can plug the car into a machine and it tells him what's broken. Also, I blame myself too. I should have said to the first Dr.. "Dr, I'll take whatever test you want, But I want you to give me the blood test for MG also" I didn't do that and I should have. I knew my body better then she did. I believe I was over 50% at fault for not forcing the issue.

Again, I get being frustrated. But I think it's unrealistic that a disease that effects way way way less then .1% of population will be diagnosed the first time.

I agree - I wouldn't want the responsibility of a Doctor; they have to make their judgement and ultimately stand by it, which must be difficult enough without pressures of harsh penalties if they make a genuine mistake. I personally don't think my case warrants any complaint - my first Neuro could well be right in his diagnosis and I may not have MG but it got me wondering how others felt/coped when I read some of the stories on here - I think I may feel wronged in some of their shoes and I feel some of them would have had better treatment and respect if they were an animal!! I have honestly been shocked and saddened by some of the stories....but also hugely in awe of the determination and persistence they showed when I think I would have just scurried away!!

If (and its still an "if") my muscle/nerve tests prove MG I would like my first Neuro to know purely because he was so adamant that I do not have the disease and refused to do any test other than the AChR antibody test based on that judgement - as I said, he could well be right but when I saw the Neuromuscular Specialist and he felt my symptoms and history are "Highly Suggestive" of MG it shocked me how different a Doctor's (and Neurologist's) judgement can be!

It also makes me wonder what the actual statistics of MG are - it seems to be quite common and almost accepted that a diagnosis is missed in the early stages and also for those who don't fit the symptoms or tests as some Dr's would like. So is there a percentage out there struggling on with half a life after being told there is nothing wrong with them who are too scared or simply don't have the energy to waste finding the right Doctor??

Getting a complaint, or especially a lawsuit, to be taken seriously can be very hard. The courts seem to only hold doctors responsible for stuff that is totally avoidable such as operating on the wrong knee or something equally stupid. When I first got sick, I had a doctor say that it was a sleep disorder. He put me on ambien. It almost killed me. I thought about suing just because I thought that somebody needed to stop that doctor. The lawyer said that there was no real grounds to sue him on. Now that ambien has a "don't use with MG" label, it would be something you could approach. Back then, they wouldn't try.

Ironically, and very sadly, the doctor really did believe in what he was doing. He thought that everybody needed to be on sleep aids. Sadly, he recently died in his sleep, most likely from his own medicine.