It is time for a new neuro. I think. Giving the neuro the benefit of the doubt, she could be saying she thinks there may be other reasons for your symptoms that warrant attention, too, and that may be true. But you have a positive blood test! I am sorry for how frustrating and crazy making this must be for you. Take care and hugs.

I really feel for you and know exactly how you feel as this is my worst fear...and I have been dismissed before. I just don't understand as the AChR test is the Holy Grail to those who are seronegative and yet - here you are with a positive test and still getting nowhere!! You said you feel deep down that this is MG - trust that. trust yourself. I know they are the Doctors and they are the professionals but YOU know your body. Like you said - this is the Snowflake Disease and the testing is hit and miss at the best of times!!

Don't doubt yourself, you belong here as much as I do (and there are many others who also have no diagnosis here and are struggling to work out what is going on) - I have no diagnosis and am waiting tests but I am not stupid - I have researched and researched and the only thing that fits my symptoms and explains how I feel is MG.....I don't know if the current testing will prove it here and now, but I truly believe, one day a test will be developed that is more reliable than the current ones and my diagnosis will be MG.

I know you need time and maybe a break from it all but we'll all be here when you're ready to come back and one of us might be able to help you as your story will help others.

Good Luck.x

I, too, am sincerely sorry for what you are going through, and certainly can relate to how exhausting all this is, but also how demeaning it is trying to get a diagnosis. Do not give up!

Like you, I also reside in Florida, and it took me 4 attempts to finally to get to Dr. Weiss. While, for me, it is a two hour drive (you it's longer), it was worth the effort, as he immediately was able to see that I definitely have MG, though I am seronegative for every test.

I called Dr. Weiss's office, after being almost arm wrestled by BCBS to go there, since they were very upset with the poor quality of care of was receiving, and I am so glad I finally listened and went. The hospital is great, with FREE valet parking, and the staff excellent.

Don't hesitate to contact me, if you need, but most importantly call Dr. Weiss's office today for that appointment. His nurses name is Sharon Thomas, at 727-820-7701.

Bill

Oh, I'm sorry you didn't have a good doctor visit! That's so frustrating that they're second-guessing the diagnosis. I agree, it sounds like you need a new neurologist. Don't give up hope! I hope you can get an appointment with a new doctor who is more helpful for you.

I called Dr. Weiss' office in St. Pete and left a message for his nurse. I do what everyone to know that I haven't been rejected treatment and I'm sure my local neurologist is willing to treat me. I am really interested to see how he reacts to the Mayo's visit this time. This is the second time they have questioned the diagnosis because I am not over 50, had a crisis, and have double vision. Unbelievable that people don't think outside of the box. I need Dr. House.

There isn't a day that goes by where I don't think of Dr House. I don't care how unpleasant he might be; at least he would fix me! ;-)

I am so sorry that you had a bad day. We are here for you. I am sure that you are not the only one who has had such experiences, they will be along shortly to tell you their stories. HUG and prayers. Barbel

Sorry you are not getting things figured out.

In reading your past posts about your eye problems, they do seem different--at least some of them-- from what MG does. Hopefully you will find out what is happening.

I was thinking about your situation, which might be a complicated one, given that it is possible to have two or more problems going on. I am starting to wonder why more doctors who treat MG, an autoimmune disease, do not factor in to their observations the fact that autoimmunity often likes to keep like company.

I was so sure of MG (and I still am) that I attributed all my symptoms to it. I talked about an uncharacteristic symptom to neuro #2, which should have begun some investigation, but all it did was make him doubt his diagnosis, since I am seronegative. We missed an opportunity to begin steps to identify a second problem because I was scared and because he lacked confidence. With your positive blood test, you should be able to get some Mestinon. One thing that helped me and my 3rd neuro was my documenting which symptoms were ameliorated by Mestinon. I had already observed that there were times when Mestinon helped ptosis but NOT a new kind of double vision, which was monocular. I started giving my doctor examples of when Mestinon worked before bringing up symptoms inconsistent with an MG diagnosis. Remember that you want your neuro to know about tingling or vision problems other than binocular diplopia. In the end, you want treatment for any illness you might have in addition to MG. If you can take Mestinon, it is a great test to help you sort out symptoms.

I hope you can get the help you need from a neuro you trust. I am on neuro #3, but many here have been through more to get with one who fits. It is discouraging to deal with the absurdity surrounding the treatment of MG, but everyone here understands and cares.

I have taken Mestinon and it doesn't touch the eye problems. One thing all of the eye doctors have said is that with vision problems, most of the time a steroid is required to treat those issues. I really have no idea which direction to go in. I am willing to go wherever and whenever, but it's frustrating that the doctors don't know. The only doctor that is convinced that this is myasthenia is my personal neurologist. He knows my medical background better than anyone. I did receive a call back from Dr. Weiss' nurse yesterday and she said the doctor said it's not MG and I should see a neuro-opthamologist. I explained I have seen 2 already with no explanation or idea. I may have to leave Florida and go see a dcotor in New England. I need to see a doctor that specializes in these types of cases.

If you are going to travel to see a doctor, Hawaii is as good a place as anywhere, right? lol

I'm sorry that you are dealing with this right now. I do hope that you get answers very soon.

Aloha,
Angie

Can your general neuro start you on steroids to see what is relieved?

The steroids may be the only option at this point. I wanted to wait before I started on heavy doses and to get confirmation that it's MG before I did that. So I'm in a pickle. I just don't want to harm my body in any way, but Im telling you my vision problems aren't going to just go away. It may be something I will have to live with the rest of my life. Thanks everyone and I apologize for my attitude when I posted the post visit. It's just depressing and I've done very well with keeping a positive state of mind and I don't want to drift back to the negative. I was hoping that team in mayo was going to say "This isn't too unusual for MG and we have seen cases where it's not just double vision." That obviously didn't happen and for her to revert back to 08 and saying my swallowing issues weren't from MG is rediculous. I still get fulcutating weakness in my toungue, throat, and other areas of my body. It's just not obvious to doctors because I can push my tounge against my cheek. Have a good day, I am debating whether or not to go to the Cleveland Clinic.

Honestly, to not begin steroids might be gambling with your health. I have a saying: when swallow goes, the breathing follows. It is shocking that neuro's overlook this potential complication. Don't be afraid of a steroid test. The treatment can be simple, and your neuro should be able to help if willing. Take care!

Seems strange to me a nurse would call and tell a seropositive person with MG type symptoms he does not have MG and the doctor won't see him. I think maybe you should speak to your local neurologist about the referral.

Sometimes it seems like the front desk is just there to keep the doctor on schedule and "protect" the doctor from the patients. :-( We also run into--something gets on our charts and gets perpetuated whether or not it is an accurate depiction of symptoms, history, and physical exam. b.