in Hospital
September 19, 2009 7:57pm
I am doing much better now. The Doctors got together and decided it was the lesser of two evils to give me the plasmaphersis and risk spreading …
wifeUSCGmom
7:46pm, May 14, 2009
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About Me
wifeUSCGmom
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About Me
I've had MG for over 20 years and now receiving Plasmaphersis because I can no longer take Imuran.
I've had MG for over 20 years and now receiving Plasmaphersis because I can no longer take Imuran.
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Interests
Fulltiming in an Motorhome :)
Fulltiming in an Motorhome :)
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Recent Activity
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Journal
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Long couple of weeks
September 18, 2009 8:15am
Have acute pancreatitits, diverticulitits and now a blood infection on top of my usual disesases.
They put a hold on the plasmaphersis until the …
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Cyclosporine
May 10, 2009 7:47pm
I just started cyclosporine, sure hope it works and is years before it affects my bonemarrow.
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scare before christmas
December 31, 2008 9:10pm
Had a scare right before christmas. I've spent a few days short of breath and started swelling and running a fever. I went to the bathroom and …
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Fistula
August 30, 2008 2:03pm
Well last wednesday was the first day to try out the fistula. They put one needle in it and used it as a outport and the tunnel cath as the in …
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Hugbook
Get Well Soon!
Sorry to hear your having so much trouble, seems like there are always hurtles there that pop up , hang in there and hope the next 2 weeks go by fast , keep you in my payers Kat
Thumbs Up
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Hug
I hope the best for you , I went thru this with my husband and I know there are ups and downs with this disease, and their are a lot of treatments that the Drs can give you , just have to find the ones that work for you , I would love to follow your story and see how you are doing , God Bless. Kat
Flower
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Photos
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Support Groups
Close Myasthenia Gravis
I've had MG for over 23 years. I was on imuran for 20 years then because of bone marrow problems had to stop and receive over 2 months 6 blood transfusions. I had IVIG but during it my blood dropped and my kidneys failed. Currently have a tunnel cath, awaiting a fistula for plasmaphersis. Plasmaphersis seems to be working :)
Treatments
- Azathioprine Working / Worked
- I took this for almost 20 years it allowed me to walk and worked fantastic until my bone marrow quit working. once off of it and with other medications the bone marrow is working but can not got back on this drug. Would so take it again despite the side effects.
- IVIG Working / Worked
- Worked for 3 months but the process due to kidney problems almost had me doing dialysis. if you have kidney problems this might not be the best treatment
- Mestinon Working / Worked
- 2 - 180's and 60 mg 1 or more a day
- Thymectomy Working / Worked
- 1st patient to have it done thru the side at Baylor 20 + years ago. Helped alot afterwards i was able to decrease the amount of mestinon used per day
- Plasmapheresis Working / Worked
- going weekly
- CPAP Working / Worked
- Bi-PAP not a Cpap
- Prednisone Working / Worked
- on 25mg it makes my blood sugar increase as well as the usual side effects. would love to be off of this medication
- Vitamin B12 Working / Worked
- for blood problems resulting from MG meds
- Cyclosporine Too Soon to Tell
- just started 150mg a day
- Neurontin Working / Worked
Open IgA Deficiency
I was born with IGA deficiency
Open Other Heart Problems
Type: Heart PalpitationsInappropriate sinus tachycardia
Treatments
- Clonidine Working / Worked
Open Diverticulitis
wifeUSCGmom hasn’t entered any details for this support group.Open GERD & Heartburn
Treatments
- Avoid Certain Foods / Chemicals Working / Worked
- Nexium Working / Worked
- Raising Bed Position Working / Worked
- Reglan Working / Worked
- Gastro paresis
