Myasthenia Gravis: Share your treatment journey

Posted by socalgal @socalgal, May 10, 2016

Hi everyone, Let me begin by telling you some of my story. In 2008 I was losing my eyesight and I couldn't make my eyelids open. I had to manually lift them to do anything. I went to a neurologist, after seeing him for a few months, he told my that he believed l had Myesthenia Gravis. So he talked with a collegue and sent me to Salt Lake City to the Univ. Medical School and have a run of tests done by their specialists. He put me on a lot of meds I knew nothing about. At first I was on very high doses of Prednisone and couldn't stop throwing up so I stopped taking them until I spoke with him. He decided that I should start again but at a lower dose until we found the one my body could tolerate. Well seven years later I am still on Prednisone plus Mesthinon, Cellcept and IVIG once a week now. Only to find out we should have stopped the Prednisone after about 8 months. Anyone with MG who would like to relate their stories, maybe there are things I can relate, too. I would like to know what is going on and what new things are out there. I have been eating much healthier and wanting more freedom to be with my family! Mostly to have a life besides Doctors and treatments! LOL Thanks for the time it took to read this. It's my first time.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

lioness | @lioness | Jan 20, 2019

@contentandwell From my last post onTapping I am looking again at the DVD it's a good one for beginners or again You need to have several hours free to look,listen to it

tammy72 | @tammy72 | Jan 21, 2019

In reply to @johnbishop "Hello @tammy72, welcome to Mayo Clinic Connect. I understand the frustration of not being able to..." + (show)

Thank you. I am calling this week to make the appointment.

John, Volunteer Mentor | @johnbishop | Jan 21, 2019

In reply to @tammy72 "Thank you. I am calling this week to make the appointment." + (show)

Hi @tammy72, You may be interested in reading through the following discussion for tips on your upcoming appointment at Mayo Clinic.

Groups > Visiting Mayo Clinic > Tips for first dr visit and tests/appt schedules
-- https://connect.mayoclinic.org/discussion/tips-for-first-dr-visit-and-testsappt-schedules/

Can you share which Mayo Clinic Campus you will be contacting? Other members may also be able to share some tips with you.

jlind | @jlind | Feb 1, 2019

I have just been diagnosed with Myasthenia Gravis, but don't seem to have many of the symptoms that those with MG report. We are retesting the blood samples to confirm or refute those findings. At the present time I have some hand stiffness, but have been able to regain strength and functionality with some simple exercises. I work out daily at a health facility, doing 30 minutes of cardio and then working on weight machines..............about 10,000 pounds in the aggregate. Eye sight seems to be OK and no droopy eyelids. Not sure if this is a mild form of MG or possibly a false positive on the test. Any thoughts? And, yes, I am under the care of two neurologists, one trained at Mayo.

Ethan McConkey, Moderator | @ethanmcconkey | Feb 1, 2019

In reply to @jlind "I have just been diagnosed with Myasthenia Gravis, but don't seem to have many of the..." + (show)

Hi @jlind you may have noticed I moved your post to this existing thread on Myasthenia Gravis. I did this os that you can read what others have said about this diagnosis. Click VIEW & REPLY to see what others have said in the past.

I also wanted to introduce you to @jolander @tammy72 @dragonfly430 who have all mentioned MG in the past and may be able to offer support for you as you go about finding out for sure if this is an accurate test.

@jlind how long will it be before you receive your final results?

jlind | @jlind | Feb 1, 2019

Hi Ethan and thanks for stepping in here. My blood draw was on Jan 30th and the doctor said it would take 7-10 days to get the results. The health system I'm in has an online reporting and scheduling service, so I might get the results sooner than that. It takes the doctor a few more days to look at the information and respond. Even if the tests result is positive, it will be in March before I do another EMG and then see the doctor (neurologist). It's a wait and see process.

jlind | @jlind | Feb 4, 2019

Since I'm new to the MG blog, I have noticed that some of these informative blogs are from years back. Does anyone care to update. Thank you.

John, Volunteer Mentor | @johnbishop | Feb 4, 2019

Hi @jlind, you are the update to the MG blog - actually it's not a blog. Blogs are updated by whoever created the blog. Connect discussions are driven by the member/patients asking questions and sharing with each other. Moderators, mentors and other members respond with personal experiences and other information they have learned about MG.

You are right, discussions have some older posts from years back because the discussion is ongoing. Do you have any questions or are you looking for some specific information?

John

Colleen Young, Connect Director | @colleenyoung | Feb 4, 2019

In reply to @jlind "Since I'm new to the MG blog, I have noticed that some of these informative blogs..." + (show)

Hi @jlind, like John said. This discussion about Myasthenia Gravis was started by members in 2016 and continues today in 2019. You, @dragonfly430 and @tammy72 are the most recent members to join the group.

jlind | @jlind | Feb 9, 2019

Hi John and thanks for your recent reply. I was waiting to get the results of my retest for MG, which was completed at Mayo-Rochester. The results came back negative for MG, which was somewhat of a surprise. We have an online network with one of the local hospitals which allows patients to review tests, look at and schedule appointments, and ask questions. Several days have gone by since I read the results but have not heard from my neurologist. So the test results are a relief but also a dilemma. The Mayo results caution that 10-15% of those who have MG do not show positive for their tests. In the meantime, I am reading an excellent book by Ronald E. Henderson, M.D. who has MD and managing that disease (Attacking Myasthenia Gravis). He writes about those who have MG and cautions about careful diagnosis. I would recommend it to anyone who may have MG symptoms. My dilemma is that while I have symptoms of being tired and fatigued, I don't have the eye, throat, or lung symptoms that are most characteristic of MG. So my situation remains "unknown" until I can talk to my neurologist and/or general physician. In the meantime, I do have a question for those who have MG or other autoimmune diseases. Have you had similar experiences with getting a correct diagnosis? I say that with respect for the medical profession, as I am beginning to see the difficulty in working through tests and eliminating possibilities. Thanks