Myasthenia Gravis*

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

Liked by grammlyn

I am dealing with the same problem you have, but not as bad. I've had MG for 5 yrs with mostly the droopy eye, but a month ago, I developed swallowing & talking problems. Was in the hospital 2 times in 2 weeks. Now on 40mg Prednisose,daily, Mestinon 60mg 4x a day & Cellcept 500mg 2x a day. It is helping a lot,but I am depend on the Mestinon. If I don't take it at the right times( every 5-6 hrs) or I get stressed,, my voice starts to get weak & I can't eat well. I have tried Protein shakes & fruit smoothies. They are filling, but I have to watch how much I take in, because I get diarrhea easy. Hope this helps & good luck with getting better

@dragonfly430

Hi. I am new here. Is there anyone here who also has this?

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Hello @dragonfly430, welcome to Connect. There is another active discussion on Myasthenia Gravis. I'm tagging our Moderator @lisalucier to see if she is able to move your post to the following discussion where your post will have more visibility.

Groups > Autoimmune Diseases > Myasthenia Gravis*
https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/

Are you able to share a little more about your health issues and any treatments you have tried or found that helped you?

John

Hi. I am new here. Is there anyone here who also has this?

Anyone else ever in no man’s land that finally received answers from Mayo? I have had 2 neurologist say that I am showing all signs of general mg, although testing is not adding up. I have been hospitalized for an mg crisis and had IVIG therapy., on Mestinon, extended release at night and 30 mg of prednisone for months, use a walker and have to minimize activity greatly or I decline. I have been to several doctors and am now being referred to Mayo. I am so tired of not ‘living’. I really want a treatment that will allow me to live a normal day and hopefully return to work. One physician believes it was triggered by breast cancer and my immune system not turning off and now fighting good cells. Stage 4 survivor in remission.

@tammy72

Anyone else ever in no man’s land that finally received answers from Mayo? I have had 2 neurologist say that I am showing all signs of general mg, although testing is not adding up. I have been hospitalized for an mg crisis and had IVIG therapy., on Mestinon, extended release at night and 30 mg of prednisone for months, use a walker and have to minimize activity greatly or I decline. I have been to several doctors and am now being referred to Mayo. I am so tired of not ‘living’. I really want a treatment that will allow me to live a normal day and hopefully return to work. One physician believes it was triggered by breast cancer and my immune system not turning off and now fighting good cells. Stage 4 survivor in remission.

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Hello @tammy72, welcome to Mayo Clinic Connect. I understand the frustration of not being able to live a normal life and the need to return to work. It's good to hear you are a Stage 4 survivor in remission. You mentioned you have been referred to Mayo Clinic. I have no experience with MG but can tell you that Mayo Clinic is very good at diagnosing and treating patients. They are patient centered and the different areas work as a team to help diagnose and treat patients.

Here is some information from Mayo Clinic that may be helpful on Myasthenia gravis Diagnosis & treatment:
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/drc-20352040

Do you already have your Mayo Clinic appointment setup?

@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

@johnbishop

Hello @tammy72, welcome to Mayo Clinic Connect. I understand the frustration of not being able to live a normal life and the need to return to work. It's good to hear you are a Stage 4 survivor in remission. You mentioned you have been referred to Mayo Clinic. I have no experience with MG but can tell you that Mayo Clinic is very good at diagnosing and treating patients. They are patient centered and the different areas work as a team to help diagnose and treat patients.

Here is some information from Mayo Clinic that may be helpful on Myasthenia gravis Diagnosis & treatment:
https://www.mayoclinic.org/diseases-conditions/myasthenia-gravis/diagnosis-treatment/drc-20352040

Do you already have your Mayo Clinic appointment setup?

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

@tammy72

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

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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.

Liked by lioness

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.

@jlind

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.

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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?

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.

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.

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

@jlind

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.

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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.

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

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