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...
After a year of craziness getting MuSK and LEMS tests lost, expired, wrong tests and finally negative results, today I am convinced that brain fog is rampant in the medical community.
Last night I got a call to pick up a 5 night overnight oxygen meter for sleep doc. I did that test in October and another 14 nights with my own meter. So I called the Medical Supplies place and they said the October ordered was re-faxed to them in error by the sleep lab.
I've been waiting for arterial blood gases for months. Family doc said we had to wait until sleep results were in. Sleep doc said he wanted family doc to order them and to do them early in the morning. Saw family doc last week and he has no admitting privileges at hospital for ABG but sleep doc does so he has to order them! Three months wasted.
Family doc's staff called yesterday to say my TSH was indeed over the range and I had to wait 6 more weeks for a retest before he'll increase my Synthroid dose. I reminded the receptionist that last fall I got terribly ill as TSH rose dramatically and said I'd take the form in early if I couldn't walk!
So today I call the sleep lab in case the O2 meter order was really for the arterial blood gases and maybe a form was waiting for me to pick up. Oh, no they said, the form will be waiting at the hospital for you to pick up, but they'd check back. A few minutes later I hear back that I'm going for pulmonary function tests in month or so, not ABG.
Just now the sleep lab calls as the family doc has sent in a referral to the sleep lab for me to be seen again. We have another confused (at their end) chat and realize I should see the sleep doc AFTER the pulmonary function tests are done, not before.
Good grief! And I thought I had brain fog! Thanks for letting me vent folks.
Flutebell
Last night I got a call to pick up a 5 night overnight oxygen meter for sleep doc. I did that test in October and another 14 nights with my own meter. So I called the Medical Supplies place and they said the October ordered was re-faxed to them in error by the sleep lab.
I've been waiting for arterial blood gases for months. Family doc said we had to wait until sleep results were in. Sleep doc said he wanted family doc to order them and to do them early in the morning. Saw family doc last week and he has no admitting privileges at hospital for ABG but sleep doc does so he has to order them! Three months wasted.
Family doc's staff called yesterday to say my TSH was indeed over the range and I had to wait 6 more weeks for a retest before he'll increase my Synthroid dose. I reminded the receptionist that last fall I got terribly ill as TSH rose dramatically and said I'd take the form in early if I couldn't walk!
So today I call the sleep lab in case the O2 meter order was really for the arterial blood gases and maybe a form was waiting for me to pick up. Oh, no they said, the form will be waiting at the hospital for you to pick up, but they'd check back. A few minutes later I hear back that I'm going for pulmonary function tests in month or so, not ABG.
Just now the sleep lab calls as the family doc has sent in a referral to the sleep lab for me to be seen again. We have another confused (at their end) chat and realize I should see the sleep doc AFTER the pulmonary function tests are done, not before.
Good grief! And I thought I had brain fog! Thanks for letting me vent folks.
Flutebell
Flutebell
Of course that only works if you are near one of these large organizations and your insurance covers it. I live near Mayo Clinic, Rochester, MN which is integrated. I have found a very good collaboration among all of the medical people who take care of me and my wife--they use a team approach to most everything that is complicated.
Good Luck
What a dream the integrated approach would be! Our province tried to set up an e-health system that was mired in corruption. E-Health 2.0 is still years away. I have a family doc in a network so at least the After Hours clinic which runs 5 nights a week has access to my files.
Our Urgent Care is tied to our ER so I can go to a place that runs 8am to 8pm, has access to Xray and CT, bloodwork and stay away from the hospital with C. difficile and MRSA problems. Our town is 100,000 so I travel two to three hours to see a calcium expert and my MG doc. It sure is hard to have rare diseases in a small city. If I hadn't been a biochemist by training I'm not sure I'd still be alive!
A friend of my mother is a physician with suspected scleroderma who headed from Canada to the Mayo to get a diagnosis so she could qualify for long term disability. She arrived there and they didn't have any of her scans or results which had been sent weeks before! It is one of the reasons I always ask for copies and travel with them, on a flash drive and in paper as an Excel chart with highlighted sections. And still I end up fighting with the system. Oh, well. At least the 3rd year med student training with my family doc got to see a case of MG. I'm his only patient with MG.
Flutebell