Hello Annie and yes my name is Darci (Icrad spelled backwards) I appreciate the support that I am getting via this site.

To answer your questions and fill in any "blanks" I might have left...
The test that the doctor did was the AChR binding antibody one...I do not believe that the other one was done at the same time. He is doing another binding one sent to a different lab this time, and he is asking if that test comes back normal for the lab to run the MuSK one...however my doctor said he does not think they will have to run the MuSK one because he is about 99.9% sure that the first test is accurate, he just wants to make sure. The lab that did the first test is in California...the second lab is Athena on the East Coast.

I have had CT of brain, to rule out stroke, tumor, etc. I have had nerve conduction tests, EMG, MRI of Head, MRI of pituitary and physical tests as well.

My doctor is planning on starting the Mestinon and seeing how I can handle that. The only other drug at this time that he mentioned was Prednisone...Prednisone can raise blood sugar and that is an issue, so we are going to cross every bridge together and make the best decisions for me and my life. I will mention to my doctor about the non-response I had on it before with my allergist and I am getting copies of my Pulmanary Function Tests and Spiromety tests done (and not passed) from my allergist.

I think you misunderstood my comments about being out of shape...what I was saying is that I knew there was something ELSE wrong besides not being in the best shape...I was not pointing the finger at myself, I know that MG is an autoimmune disease/disorder. I know it just is what it is...I was just saying that I knew something else was wrong with my body OTHER than just being a little out of shape. I was getting out of breath with the slightest activities, I was exhausted, I hurt all the time, my muscles were super weak and getting weaker....so I just knew I needed more answers.

I am married and have a huge support of family and friends (only a few select know at this point...I will talk to each when I know more about what is happening and how severe) I just don't want to pass on the wrong information, so I am waiting and learning as much as I can...I am also a teacher on Spring Break until Monday...so we will see how this is all going to work...I don't think I am bad enough for a hospital stay or visit....I can still do things...yesterday I put a few dishes away (my son helped me) and I put some clothes in the laundry (son helped again) and I took a nap and even went to a few stores and visited my mom...I have been living with this I think for some time, and I am used to doing stuff...I just am doing it slower and not nearly as much as other people some times....however since the diagnosis, I am more aware now of just how tired, sore, weak and out of breath I really am.

Thank you again...I am very glad I found this place!!!! However, my arms are tired and quivering again....so I am going to go rest them!!! Thank you for the support...ALL OF YOU!!!!

Okay...it is official!!!! I am on Mestinon...even though I just started (yesterday) I already notice a difference. For the next 2 weeks, I am on 30 mg in the morning and 30 mg in the early afternoon. Then I start 30 mg morning, noon and early evening for 2 weeks....then I go to 30, 30 and 60 for another 2 weeks. Of course, I see my Neuro in 2 weeks.

Anything I need to be aware of with this drug??? (besides the obvious...that is already known) If they do the bloodwork again, will my numbers be down? Does it affect that or is Mestinon just for raising the amount of "chemical senders from my nerves"? I am sorry...this is all new to me, once I keep using/hearing the correct terms, I will be able to use the correct terms!!!!

Am I able to take anyting if the side effects become super unbearable??? Like something for cramps, or diarreha or constipation?? I will be asking the doctor also, but since I am on here now, decided to ask you all as well.

Sincerely,

Darci from Chicago!!!!

Hi Darci!

Glad you are responding to the Mestinon! And I think it's great that your doc has you slowly increasing your doses slowly. It will give you the best feedback on what is enough or too much (which, of course, changes with weather, activity, stress, etc.!!)

You may be lucky and have no side effects with Mestinon. I don't. Anyway, it won't change your antibody levels at all, but it can distort EMG's. Annie has the best description of how it works....but think of it as a drug that slows down the deactivation of our muscle 'go juice'. It takes about 20-30 minutes to kick in and lasts for about 4 hours. Think of its effective time on a bell shaped curve - takes a bit to kick in, great coverage for a bit, then the effectiveness begins to wane.

Will be curious to hear what the second blood test shows - never heard of antibody levels as high as yours!

Well the second test came back POSITIVE also...NO SURPRISE...with numbers as high as the first test, my doctor didn't think anything differently. I am now up to a total of 300mg Mestinon a day (180 mg time span + 60 mg in the morning and an additional 60 mg by 2-3 pm) I go to Nowthwestern University Hospital to meet with a doctor who has more experience than my current doctor...my current doctor wants to see him and thinks I might be on a fast track to Thymectomy....I don't care!!!! I just want to feel better!!!

They are afraid to try steroids because of the CRAZY HIGH number of the antibodies...not sure of the result....so we will see what happens in Chicago next week...until then, I will go sleep on couch as I am super weak right now!!!