My MG was definatively diagnosed with a tensilon test with Mayo's neuro opthamology. I was seronegative and EMG negative at the time, but my eye was drooping. The tensilon injection opened my eye right up and I was diagnosed MG. I had a 4 day workup when I was first diagnosed. Go in with a positive attitude and let them test you for everything (like they did me), I had MRIs, an MS spinal tap, all kinds of tests, I even caught all my urine for 8 hours walking around the campus, and in the end, I walked out with MG after 4 days of testing.
My MG was definatively diagnosed with a tensilon test with Mayo's neuro opthamology. I was seronegative and EMG negative at the time, but my eye was drooping. The tensilon injection opened my eye right up and I was diagnosed MG. I had a 4 day workup when I was first diagnosed. Go in with a positive attitude and let them test you for everything (like they did me), I had MRIs, an MS spinal tap, all kinds of tests, I even caught all my urine for 8 hours walking around the campus, and in the end, I walked out with MG after 4 days of testing.
Yes they are with Mayo. Because I need the macroadenoma removed I see endocrinology, neurosurgery, neuromuscular (because of the MG diagnosis), have labs, EMG's, and MRI! Very thorough evaluation for sure!
The testing wasn't painful at all. The worst part was carrying a jug around to collect urine. I had to take it everywhere with me, and collect urine. So embarassing. The spinal tap for MS wasn't painful at all, the nurse did an excellent job. I had a nuclear PET scan, that wasn't painful, I just recall being tired.
My insurance will pay after I reach about 10 thousand out of pocket. I checked with them and they actually said I will owe about 6 thousand after these appointments (because my hsb also has been sick so we've been paying towards our deductible). So..........I guess I will be on a payment plan for a very long time. That's part of the reason I haven't pursued treatment sooner. My quote for surgery alone was almost 82 thousand. Unfortunately, I've started feeling so poorly that I'm having a hard time working but I continue to work as much as possible, and as much overtime as I can. Honestly, I have felt that it's a lost cause at times, that it would be better if I just died and then we wouldn't have to worry about the financial part. How's that for honesty! I get very frustrated but know I should be thankful to have insurance. But, I pay $500 a month for my insurance and then my co-pays, deductible, etc. Depressing.
My insurance will pay after I reach about 10 thousand out of pocket. I checked with them and they actually said I will owe about 6 thousand after these appointments (because my hsb also has been sick so we've been paying towards our deductible). So..........I guess I will be on a payment plan for a very long time. That's part of the reason I haven't pursued treatment sooner. My quote for surgery alone was almost 82 thousand. Unfortunately, I've started feeling so poorly that I'm having a hard time working but I continue to work as much as possible, and as much overtime as I can. Honestly, I have felt that it's a lost cause at times, that it would be better if I just died and then we wouldn't have to worry about the financial part. How's that for honesty! I get very frustrated but know I should be thankful to have insurance. But, I pay $500 a month for my insurance and then my co-pays, deductible, etc. Depressing.
Thats insane. Since I’m so nauseous I can barely eat or drink and my lips and tongue are swollen it won’t be long before my time comes. I look forward to no pain
Thats insane. Since I’m so nauseous I can barely eat or drink and my lips and tongue are swollen it won’t be long before my time comes. I look forward to no pain
Be very careful about the vaccine. I have a very strong immune system, and it triggered permanent colitis (now 5 months ago Pfizer dose 2) and made my burning mouth syndrome much worse. Be warned!
I began MG treatment with Mestinon (after my diagnosis) and after 18 months or so I just had to stop the meds as I saw really little improvement with my symptoms. Switched neuro docs to a "neuro muscle specialist". I have been on Cellcept for my MG and had IVIG infusions X2 every 4 weeks for 22 months. Symptoms of fatigue and muscle weakness/contractions in my legs was much improved. Stopped IVIG 5 months ago and continued to take Cellcept. However, 3 months ago my symptoms began creeping back. I am now restarting IVIG infusions this week along with continuing Cellcept. My Dr. has asked if I wanted to start another treatment regimen using Rituximab infusions instead. It was developed as a treatment for non-Hodgkin lymphoma but has been used successfully for auto immune diseases. My question is has anyone had this treatment for MG and if so, what was the result?
I began MG treatment with Mestinon (after my diagnosis) and after 18 months or so I just had to stop the meds as I saw really little improvement with my symptoms. Switched neuro docs to a "neuro muscle specialist". I have been on Cellcept for my MG and had IVIG infusions X2 every 4 weeks for 22 months. Symptoms of fatigue and muscle weakness/contractions in my legs was much improved. Stopped IVIG 5 months ago and continued to take Cellcept. However, 3 months ago my symptoms began creeping back. I am now restarting IVIG infusions this week along with continuing Cellcept. My Dr. has asked if I wanted to start another treatment regimen using Rituximab infusions instead. It was developed as a treatment for non-Hodgkin lymphoma but has been used successfully for auto immune diseases. My question is has anyone had this treatment for MG and if so, what was the result?
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My MG was definatively diagnosed with a tensilon test with Mayo's neuro opthamology. I was seronegative and EMG negative at the time, but my eye was drooping. The tensilon injection opened my eye right up and I was diagnosed MG. I had a 4 day workup when I was first diagnosed. Go in with a positive attitude and let them test you for everything (like they did me), I had MRIs, an MS spinal tap, all kinds of tests, I even caught all my urine for 8 hours walking around the campus, and in the end, I walked out with MG after 4 days of testing.
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3 ReactionsHow painful was all the testing?
How do you afford all this?
The testing wasn't painful at all. The worst part was carrying a jug around to collect urine. I had to take it everywhere with me, and collect urine. So embarassing. The spinal tap for MS wasn't painful at all, the nurse did an excellent job. I had a nuclear PET scan, that wasn't painful, I just recall being tired.
-
Like -
Helpful -
Hug
3 ReactionsMy insurance will pay after I reach about 10 thousand out of pocket. I checked with them and they actually said I will owe about 6 thousand after these appointments (because my hsb also has been sick so we've been paying towards our deductible). So..........I guess I will be on a payment plan for a very long time. That's part of the reason I haven't pursued treatment sooner. My quote for surgery alone was almost 82 thousand. Unfortunately, I've started feeling so poorly that I'm having a hard time working but I continue to work as much as possible, and as much overtime as I can. Honestly, I have felt that it's a lost cause at times, that it would be better if I just died and then we wouldn't have to worry about the financial part. How's that for honesty! I get very frustrated but know I should be thankful to have insurance. But, I pay $500 a month for my insurance and then my co-pays, deductible, etc. Depressing.
-
Like -
Helpful -
Hug
1 ReactionThats insane. Since I’m so nauseous I can barely eat or drink and my lips and tongue are swollen it won’t be long before my time comes. I look forward to no pain
I always say it will be the best sleep I've every hard! Sorry to hear about your pain.
Be very careful about the vaccine. I have a very strong immune system, and it triggered permanent colitis (now 5 months ago Pfizer dose 2) and made my burning mouth syndrome much worse. Be warned!
I began MG treatment with Mestinon (after my diagnosis) and after 18 months or so I just had to stop the meds as I saw really little improvement with my symptoms. Switched neuro docs to a "neuro muscle specialist". I have been on Cellcept for my MG and had IVIG infusions X2 every 4 weeks for 22 months. Symptoms of fatigue and muscle weakness/contractions in my legs was much improved. Stopped IVIG 5 months ago and continued to take Cellcept. However, 3 months ago my symptoms began creeping back. I am now restarting IVIG infusions this week along with continuing Cellcept. My Dr. has asked if I wanted to start another treatment regimen using Rituximab infusions instead. It was developed as a treatment for non-Hodgkin lymphoma but has been used successfully for auto immune diseases. My question is has anyone had this treatment for MG and if so, what was the result?
Hi PMDwarrior, welcome. Allow me to tag fellow members @skhollandmt @rambo77 @Erinmfs @ellen307 @pdietrich @lynnes @chorba @janyce who can share their treatment experiences with Myasthenia Gravis and Rituximab infusions.
You may also be interested in this related discussion:
- Myasthenia Gravis: Share your treatment journey https://connect.mayoclinic.org/discussion/hi-everyone-let-me-begin-by-telling-you-some-of-my-story/
When do you plan to start Rituximab?