Newly Diagnosed, not new to this suffering
Posted: Sat Jun 27, 2015 1:45 pm
Hi. I was diagnosed one month ago today, but suspect I've had this disease for at least nine years and possibly a lot longer, maybe even more than 20 years when I was still in the military. I would get sick and tired and clumsy for awhile and it would get better, but each time it came back it was worse. The first time I partially lost vision was nine years ago. I also have Fibromyalgia, Hemoplegic Migraines, Peripheral Nerve Damage, Bipolar (top DX on my medical records and why I'm discounted so easily), and a host of lesser problems like Asthma, Carpal Tunnel, and Arthritis. I can't remember them all. Oh yeah, and I had PCOS that turned into Ovarian Cancer and I'll be reaching 5 years in remission in just a little while.
I get my care through the Veterans Administration and until last year my medical care has come through a revolving train of medical students at a 'teaching' VA hospital, so frustrating it made me want to scream. After appeals to my Senator I was finally assigned to a NP who went through my medical records and got mad, was in disbelief at what she saw, and got me into the MS center for evaluation. The first doc I saw there immediately discounted everything I said. I appealed to the Nurse again and she got me in to see another. This time he ordered a spinal tap and it showed the IGG bands and he ordered all kinds of tests to rule anything out. Lo and behold, only MS remained. This probably isn't an unfamiliar story.
I'm taking daily Copaxone for the MS, Gabapentin for Peripheral Nerve Damage, Depakote for the HM (which also works better for the Bipolar than any Bipolar meds ever did so I've refused the old ones so I'm now also labeled as "Noncompliant"). Over the last few years I've gradually changed my diet from the standard American garbage to organic fruits, vegetables, meats, fish, home made veggie juice, and water and quit smoking. I believe the dietary changes have helped in general, at worst they can't hurt me. I'm currently reading Dr. Wahls book.
I spent hours last night reading entire threads off this forum and wanted to say hello instead of just being a lurker.
I get my care through the Veterans Administration and until last year my medical care has come through a revolving train of medical students at a 'teaching' VA hospital, so frustrating it made me want to scream. After appeals to my Senator I was finally assigned to a NP who went through my medical records and got mad, was in disbelief at what she saw, and got me into the MS center for evaluation. The first doc I saw there immediately discounted everything I said. I appealed to the Nurse again and she got me in to see another. This time he ordered a spinal tap and it showed the IGG bands and he ordered all kinds of tests to rule anything out. Lo and behold, only MS remained. This probably isn't an unfamiliar story.
I'm taking daily Copaxone for the MS, Gabapentin for Peripheral Nerve Damage, Depakote for the HM (which also works better for the Bipolar than any Bipolar meds ever did so I've refused the old ones so I'm now also labeled as "Noncompliant"). Over the last few years I've gradually changed my diet from the standard American garbage to organic fruits, vegetables, meats, fish, home made veggie juice, and water and quit smoking. I believe the dietary changes have helped in general, at worst they can't hurt me. I'm currently reading Dr. Wahls book.
I spent hours last night reading entire threads off this forum and wanted to say hello instead of just being a lurker.