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...
I took a break from some of the boards for a while. Here is the latest update on my husband.
November 2010- Myasthenia Crisis
Achilies Tendon Surgery(From reinjury due to recent falls)
December- MG was causing constant doubled vision, problems swallowing, choking and feeling like he had to take deep breaths. Emory doctor said the choking and shortness of breath wont come and go with MG. She is a new doctor and when we say most his muscle mass is gone and he feels weak and tired, to her he is average on strength. This was all so confusing as he was having a good day- but his strength was not there in lower body, and arms would tire if he was active. He has been in wheelchair due to weakness and heeling foot.
Feb. -Breathing shortness and vision continues. He had trouble swallowing his pills. His neuropathy makes him hurt so bad all the time, he can't feel need pricks, his temperature of his skin is so HOT! It is so weird but one moment he can't feel my light touch and the next my touch feels like ultra sensitive. Talk to doctor at Emory and she isn't worried about the SFN, says she is not sure how to treat as BIOPSY confirmed it is idiopathic and with positive IGA, IGG and ACHR Binding with a positive QSART, she completly dismissed it, and the pain from it seems to cause MG flares.
March- IVIG in the hospital at Emory. 2nd day chronic headaches. 3rd day he was vomiting, feverish and could not move neck/head. They said he was had mengeral symptoms. They stopped the ivig was only was infused at 100 to start with. The headache continued and after 9 hours fever went away they restarted at 75. For the remaining 3 days the headache was very present and severe. They released him 10 minutes after infusion was complete at 11:50 at night!!!! The doctor had left earlier that day for a week vacation and the house resident needed the bed so we where told to follow up.
March- Vision and choking improved. But 2nd day home had bleeding from ears for a week. He developed red tiny blood spots on hands and feet, ulcerations around 15 of them over his skin. Doctor now things the IVIG may have triggered a blood disorder?? It made his neuropathy worse. He has been in so much pain. He still spends most time in BED. When you have so many things, pain alone, playing against you I guess whatever makes it better you do and worse you dont do.
April-Vision disturbances returning, several choking spokes, and breath shortness. They want to do the Bi-PAP on him at home due to he stopped breathing in his sleep multiple time in hospital. His oxygen ran average of 86, and all they would do was make him take deep deep breaths until they got it up in hospital. Emory doctor doesnt want to ever repeat IVIG due to reaction. But she also doesn't want to address his autonomic neuropathies, or chekc his head to see if the menegeral thing caused anything, with the bleeding from both ears. So our original diagnosing doctor, KAMEL CHAMELI, Cleveland Clinic in Ohio(WHICH WE LOVE!!) doesn't want us having to drive this far and his nurse said it was ridiculous we had to wait 10 months for a prescription to be honored by one of the local neurologists here.They always said they didn't believe the tests results-well they got proven wrong when they ran different tests and they came up positive
So now we are going to Cleveland in Ft. Lauderdale April 19. Dr. Salanga(SP). It is a 9 hour drive, but we are hoping he can work with our pain management and family physicians.
I wanted to share as we all go through something different. MG alone is a terrible disease, but when you mix it with other things it can take away someone hopes of feeling better, especially with non responsive care and doctors who will not listen. I called this week to let the doctor know that Hubby took a fall while trying to get up from his chair to his walker on our drive way, into the red trip trees, so please be careful everyone, I have witnessed how quick you can go from strength to nothing in seconds.
GOD BLESS YOU ALL!!
Husband-
Myasthenia Gravis Generalized(Positive ACHR Binding and strictional Antibodies in May 2010 and positive IGA and IGG antibodies.
Small Fiber Neuropathy(March 2010 positve Qsart, December 2010 positive skin biopsy)
Sleep Apnea, Hypertension, chronic pain syndrome, osteoarthritis, achilies tendonitis, spinal stenosis, spinal spondylosis, spinal cord stimulator implant @2009
depression 2nd to diagnoses, low vitamin d and testerone levels, Tachycardia sessions,
Myasthenia Crisis(march 2010 and November 2010)
IVIG -Carimune(March 2011- side effects of menegitis nature)
Urine release difficulties still being evaluated
Celiac
H-Pylori
Testing for Blood Disorder since IVIG therapy.
Muscle Spasms and Brain Lesions
Meds,
Duragesic 75 mg, roxicodone, 15mg x 4, mestonin 60 mg x4, hyco(SP)x 3(For mesty side effects), coreg 80, norvasc 10, micardis 80, cymbalta 160 mg, lidoderm patches, flomax, lunesta 3mg, tizidiane, proair, gabapentin 300mg x 3 day, votaren cream
Discontinued Prednisone 50mg in Feb. 2011 due to increase in blood pressure.
Social Security Update-DENIED x 1 October 2010, Denied x 2 Feb. 2011, PENDING HEARING
November 2010- Myasthenia Crisis
Achilies Tendon Surgery(From reinjury due to recent falls)
December- MG was causing constant doubled vision, problems swallowing, choking and feeling like he had to take deep breaths. Emory doctor said the choking and shortness of breath wont come and go with MG. She is a new doctor and when we say most his muscle mass is gone and he feels weak and tired, to her he is average on strength. This was all so confusing as he was having a good day- but his strength was not there in lower body, and arms would tire if he was active. He has been in wheelchair due to weakness and heeling foot.
Feb. -Breathing shortness and vision continues. He had trouble swallowing his pills. His neuropathy makes him hurt so bad all the time, he can't feel need pricks, his temperature of his skin is so HOT! It is so weird but one moment he can't feel my light touch and the next my touch feels like ultra sensitive. Talk to doctor at Emory and she isn't worried about the SFN, says she is not sure how to treat as BIOPSY confirmed it is idiopathic and with positive IGA, IGG and ACHR Binding with a positive QSART, she completly dismissed it, and the pain from it seems to cause MG flares.
March- IVIG in the hospital at Emory. 2nd day chronic headaches. 3rd day he was vomiting, feverish and could not move neck/head. They said he was had mengeral symptoms. They stopped the ivig was only was infused at 100 to start with. The headache continued and after 9 hours fever went away they restarted at 75. For the remaining 3 days the headache was very present and severe. They released him 10 minutes after infusion was complete at 11:50 at night!!!! The doctor had left earlier that day for a week vacation and the house resident needed the bed so we where told to follow up.
March- Vision and choking improved. But 2nd day home had bleeding from ears for a week. He developed red tiny blood spots on hands and feet, ulcerations around 15 of them over his skin. Doctor now things the IVIG may have triggered a blood disorder?? It made his neuropathy worse. He has been in so much pain. He still spends most time in BED. When you have so many things, pain alone, playing against you I guess whatever makes it better you do and worse you dont do.
April-Vision disturbances returning, several choking spokes, and breath shortness. They want to do the Bi-PAP on him at home due to he stopped breathing in his sleep multiple time in hospital. His oxygen ran average of 86, and all they would do was make him take deep deep breaths until they got it up in hospital. Emory doctor doesnt want to ever repeat IVIG due to reaction. But she also doesn't want to address his autonomic neuropathies, or chekc his head to see if the menegeral thing caused anything, with the bleeding from both ears. So our original diagnosing doctor, KAMEL CHAMELI, Cleveland Clinic in Ohio(WHICH WE LOVE!!) doesn't want us having to drive this far and his nurse said it was ridiculous we had to wait 10 months for a prescription to be honored by one of the local neurologists here.They always said they didn't believe the tests results-well they got proven wrong when they ran different tests and they came up positive
So now we are going to Cleveland in Ft. Lauderdale April 19. Dr. Salanga(SP). It is a 9 hour drive, but we are hoping he can work with our pain management and family physicians.
I wanted to share as we all go through something different. MG alone is a terrible disease, but when you mix it with other things it can take away someone hopes of feeling better, especially with non responsive care and doctors who will not listen. I called this week to let the doctor know that Hubby took a fall while trying to get up from his chair to his walker on our drive way, into the red trip trees, so please be careful everyone, I have witnessed how quick you can go from strength to nothing in seconds.
GOD BLESS YOU ALL!!
Husband-
Myasthenia Gravis Generalized(Positive ACHR Binding and strictional Antibodies in May 2010 and positive IGA and IGG antibodies.
Small Fiber Neuropathy(March 2010 positve Qsart, December 2010 positive skin biopsy)
Sleep Apnea, Hypertension, chronic pain syndrome, osteoarthritis, achilies tendonitis, spinal stenosis, spinal spondylosis, spinal cord stimulator implant @2009
depression 2nd to diagnoses, low vitamin d and testerone levels, Tachycardia sessions,
Myasthenia Crisis(march 2010 and November 2010)
IVIG -Carimune(March 2011- side effects of menegitis nature)
Urine release difficulties still being evaluated
Celiac
H-Pylori
Testing for Blood Disorder since IVIG therapy.
Muscle Spasms and Brain Lesions
Meds,
Duragesic 75 mg, roxicodone, 15mg x 4, mestonin 60 mg x4, hyco(SP)x 3(For mesty side effects), coreg 80, norvasc 10, micardis 80, cymbalta 160 mg, lidoderm patches, flomax, lunesta 3mg, tizidiane, proair, gabapentin 300mg x 3 day, votaren cream
Discontinued Prednisone 50mg in Feb. 2011 due to increase in blood pressure.
Social Security Update-DENIED x 1 October 2010, Denied x 2 Feb. 2011, PENDING HEARING
Wow! So sorry your husband has had such a time with MG and all his other illness and symptoms. I think we can all attest to the fact that finding good experienced MG docs can be so frustrating as well as dealing with multiple Dr's, hospitals, etc. Glad you are not giving up and continue to look for the right doc.
He really had a bad reaction to IVIG! I was infused very slowly. (70g took 7 hours) with pretreatment of tylenol and benedryl.
Has plasmapheresis been discussed? The trade off is trying to find a vein in each arm (so far I don't need a port).
I see he was diagnosed with H-Pylori. Has he been rechecked to make sure he is negative for the bacteria? I also had/have the H-pylori. It can certainly cause a myriad of symptoms. I think it caused my skin lesions but the dermatologist diagnosed me with discoid lupus. I have not had any new lesions since starting plasma exchange--is it clearing the lupus antibodies too or was it H-pylori? Who knows.
Plase keep us posted and good luck,
~sherry
Best wishes,
TJ
Plasmapheresis has not been tried, most likely due to him not having a vein hardly to use for an IV, I am sure they would have to do a Port.