Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello Everyone, I am in search of support and advice. I was diagnosed with generalized Myasthenia a year and a half ago. My symptoms at that time were weakness in my arms and legs and extreme fatigue. I had a pulmonary embolism about a year before my diagnosis and suffered shortness of breath for a very long time after, that the doctors did not think was related to the PE (caused by an autoimmune disorder). I went through every test known to man and was hospitalized for about three months total over a six month period. I was diagnosed with MS(-ultimately reversed), autoimmune encephalopathy and eventually MG.
It has been a long two years...
I was originally treated with Mestinon and I was already on Cellcept for my related autoimmune disorders. I was found to have thymic hyperplasia and I had surgery last June. I underwent a treatment and a half of PLEX as I had a heart rate of 160 with very low blood pressure, all the doctors came running! It was determined I could not handle anymore sessions...After surgery I was started on Methotrexate instead of the Cellcept and I went into a virtual remission (aside from fatigue) for nine months.
About six weeks ago though after an extreme period of stress I started having symptoms. This flare was very different then the last. I have weakness in my arms, legs and neck. I have trouble chewing and swallowing and a speech therapist diagnosed me with flaccid dysarthria.
My neuro upped my Mestinon to 120 every two hours and suggested that I think about IVIG. By the end of the week, I could barely get out of bed and I was having shortness of breath so I went to the ER.
The admitting doctor took one look at my history and admitted me.
The neuro consult thankfully was ameanable about talking to my neuro as she is an expert. I underwent 5 days of IVIG at a rate of 30 (due to my clotting issues they were concerned to run it much faster.)
I had a headache two of the days but other then that no symptoms...
I was just released this past week and my neuro wants several more courses...
I am due to be admitted on the 16th for a 21/2 day course and then again three weeks after that...This time the doc wants to run it at 40 as she thinks I will tolerate it fine.
I had a bolus of fluids prior to treatment and benadryl and I drank a lot of water. Any advice for my future treatments and do any of you deal with fear of clots? I know due to my history of PE this is in the forefront of my mind...It terrifies me, but PLEX won't work...
Also how long does it take to feel better...I do feel stronger and I can make it through the day without falling asleep every hour! I am still only eating soft foods but I am not choking on them so that is fine...I am still short of breath upon exertion but not other then that
For those of you who have had IVIG, have you had several courses like my doc is recommending to me?
Thank you so much for your advice and support!
It has been a long two years...
I was originally treated with Mestinon and I was already on Cellcept for my related autoimmune disorders. I was found to have thymic hyperplasia and I had surgery last June. I underwent a treatment and a half of PLEX as I had a heart rate of 160 with very low blood pressure, all the doctors came running! It was determined I could not handle anymore sessions...After surgery I was started on Methotrexate instead of the Cellcept and I went into a virtual remission (aside from fatigue) for nine months.
About six weeks ago though after an extreme period of stress I started having symptoms. This flare was very different then the last. I have weakness in my arms, legs and neck. I have trouble chewing and swallowing and a speech therapist diagnosed me with flaccid dysarthria.
My neuro upped my Mestinon to 120 every two hours and suggested that I think about IVIG. By the end of the week, I could barely get out of bed and I was having shortness of breath so I went to the ER.
The admitting doctor took one look at my history and admitted me.
The neuro consult thankfully was ameanable about talking to my neuro as she is an expert. I underwent 5 days of IVIG at a rate of 30 (due to my clotting issues they were concerned to run it much faster.)
I had a headache two of the days but other then that no symptoms...
I was just released this past week and my neuro wants several more courses...
I am due to be admitted on the 16th for a 21/2 day course and then again three weeks after that...This time the doc wants to run it at 40 as she thinks I will tolerate it fine.
I had a bolus of fluids prior to treatment and benadryl and I drank a lot of water. Any advice for my future treatments and do any of you deal with fear of clots? I know due to my history of PE this is in the forefront of my mind...It terrifies me, but PLEX won't work...
Also how long does it take to feel better...I do feel stronger and I can make it through the day without falling asleep every hour! I am still only eating soft foods but I am not choking on them so that is fine...I am still short of breath upon exertion but not other then that
For those of you who have had IVIG, have you had several courses like my doc is recommending to me?
Thank you so much for your advice and support!
I only had one round of IVIG (5 doses over 10 days.) and never had it again.
Still not in complete remission though. Good luck to you!
TJ
I agree that your mestinon dose sounds way too high. Too much mestinon can have the opposite effect and contribute to weakness.
The Mestinon doage was an issue when I was in the hospital. My neuro (the MG expert) prescribed that dosage when this most recent flare began. When I was admitted the general neuro on staff said that the dose was way too high. He was concerned as you all have mentioned about the dose contributing to the weakness. As I had shortness of breath/blood clotting issues I was on a heart monitor in the hospital. My heart rate was dipping into the low 40's at night and the neuro hypothesized that the hight dose of mestinon could be the cause. He halved the dose to 60 every 2 hours and I have stayed at that dose now for about a week. I don't notice a difference between that dose and the high dose...
Have any of you had clotting issues with the IVIG or a concern about it? Still nervous about these treatments...
Thank you all!
Huperzine like Mestinon is a acetylcholinesterase inhibitor but it does NOT have the side effect of mestion. I use it.
http://www.drugs.com/comments/huperzine-a/for-myasthenia-gravis.html
I will look into the Huperzine option...hard too question my neuro as she is a "expert" at a teaching/research hospital if you know what I mean and she is very good...
Thanks