HELP...at Mayo, and even more confused
 

Hi all...well I am at Mayo, seeking more direction and clarity...and I feel like my head is spinning. I tested positive for MG...both AcHR tests were positive...one was 234.5 titers (from Quest Lab) and the other (from Athena) just stated "Positive". I have been to Northwestern in Chicago and felt totally 100% okay with the dx...in the sense that this is what I have. Well, now I am at Mayo and the doctor here (who I stated I was just trying to get more information on the best method of thymectomy and the best treatment - in their opinion) stated that she isn't sure I have MG!!!! Now she is testing me for LEMS, well I will say, I DO NOT GET STRONGER with exercise...I CANNOT even exercise. Being out in my garden for more than 5 minutes would be a FLIPPING MIRICLE....Now I don't know what to think....I got up here on 6-24-12 with every intention of leaving 6-26-12...and I will be lucky if I get out of here by 6-28-12!!!!

Need some words of support and/or your thoughts experiences...etc. I know Mayo is supposed to be one of the best...but what is going on now....HOW CAN MY Receptor antibodies test out at 235 and me NOT have MG?? What is this doctor thinking?? Am I wrong???? HELP!!!!!

Darci from Chicago

Darci, I'll PM you.

Annie

Keep your head up Darci. They are probably just covering all the bases. At least when they are done you will have a more definite direction to go especially if you are considering the thymectomy. Wish you the best.
Al

I can only imagine how confusing this all is.... but you actually are lucky to be getting the thorough testing and a bunch of docs who are considering every possible angle.

Pls. let us know outcome!!

Okay...
 

The specialist here at Mayo...is suggesting to get off CellCept and go on Imuran...and do a cortisone treatment for 6 months while Imuran works or a couple of 5 days of IvIg therapy....Increasing Mestinon to 90 Mg every 4 hours while awake....Thymectomy not now...maybe in 6 months to give me a change to get evened out on meds....aaaahhhhhh now more stuff to learn.

Thank you all

Darci


also I am doing the MG walk here in Sept!!!! I have already raised $1050 for MGFA!!!!! and my team has raised $1150!!!!!

Hi Darci
 

I bet you are confused. However, Mayo does have one of the best diagostic centers in the country. Do you have all records and tests presented to them from Chicago? You need to ask the doctors there, how they can say you are negative, with those numbers. I am not sure what LEMS is. Don't hesitiate to grill them on any issue you have. Keep a journal while you are going through the tests with all your quesitons. If you are not getting the answers you need to feel good about it, insist while you are there that they explain their positions clearly. I went there in 1980. Yes, several days of testing, but by the time I left, I knew exactly what was wrong, and was sent in the right direction for treatment. Hang in there. Repeting tests, is something I hope you do not have to experience. Most of the doctors I saw there were fantastic and did explain things to me very clearly. Also ask for the latest research, studies and trials that are going on once you get some defininative answers. They have access to all the latest research. You have to ask for that, but they will tell you. I wish you all the best. Let me know how you do. ginnie:hug:

Ginnie-
Thank you for your response.
I am back home in Illinois now...have a more clear direction now. The Neuro there never stated that I was Neg. for MG...but she did state that SOME people test positive and might have LEMS (Lambert-Eaton Myasthenia Syndrome - I think) and not MG. However, after meeting with her again, after my tests results were done and in her possession, she is confident it is MG. She did say that she feels the MG is mild...which, because I suffer, I sorta disagree, but I know that it could be a lot worse. I am hopeful that medicine and maybe surgery down the road a bit will be helpful. Thank you again for the support!!!

Home Icrad
 

I am glad you made it home OK. That Mayo clinic is something else isn't it? I was amazed when I was here with 27 below!!!!!!!!!!! My butt froze in the underground.
I am sorry you have this disorder, but to know for sure is kind of a relief. It is always not knowing what is wrong that brings such stress.
What kind of surgery is down the road? Can you tell me what the illness is exactly and educate me? I had not heard of LEMS before. MS and MG yes.
I know they put you through alot of tests, I sure remember that part quite well. I hope you can get some rest, and relax now that you are home. Do you have a good support team?

I was raised in Illinois, Northbrook. Went to school in HS in Wilmette. I raised my children in Missouri, and wound up going to Mayo in 1980. They were good to me.
Have a good day. I will keep you in my thoughts and prayers. ginnie

LEMS is another neurotransmitter disease...similar in many ways to MG. In LEMS the problem is presynaptic and in MG it's post. LEMS is sometimes secondary to a carcinoma (usually - but not always - small cell lung cancer).

I only know this because it was suspected when I was clinically dx'd and they tested for LEMS in addition to the MG antibodies. When they did the thoracic CT they focused on lung and thymus just to be sure.

LEMS is more rare than MG and is an autoimmune disease that may (or may not) be triggered by a cancer in the body.

I was just diagnosed with LEMS by a neurologist in Green Bay, WI. He has never seen this disease before, and based his diagnosis on a negative tessalon test ( which is positive in MG ), and an abnormal EMG which indicated LEMS. Thoracic and abdominal cat scans were negative for small cell lung cancer - I smoked for 20 years but quit 20 years ago-and all my antibody tests were negative including MUSK and voltage gates calcium channel blockers. I have been referred to Mayo in Rochester 10/16/12. Should I get a PET scan or spinal tap before I go there ? Should I have a consult with an oncologist ? My proximal leg muscles are weak, my knees buckle, I have orthostatic hypotension and profuse diaphoresis, trouble walking, gastroparesis, tachycardia, and depression. Steck