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Originally Posted by Southern Bell
Sorry Jeff but it did not help either illness. It may be a coinsidence, but things seem to go downhill after the thymectomy. At least I started having more of the SPS symptoms afterwards. I also didn't have an IVIG or phasmaphresis performed prior to the surgery which is something I have read that others had prior to surgery. The hospital I went to is suppose to be the best place to be for serious illnesses (or at least that's what I thought) but I have learned that it is anything but the best. It's simply a teaching hospital.
I had my appointment this morning with my new neuro and have learned that while he is actually a doctor, my ex-neuro is a professor and his idea of treatment is diagnosis and send you packing. Looking back on the whole experience, I understand that viewpoint completely.
I'm also starting to believe, as my neuro does, that I only have SPS and not MG. My MG symptoms are mainly ocular problems (which I'm taking the prednisone) and some swallowing problems. These symptoms can also be associated with SPS which my husband found in his extensive internet research.
As you can tell, once I get started talking about these illnesses I can't stop especially with someone who understand what we're going through.
Becky
Southern Bell
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I completely understand. Had I been healthier in college, I'd have been a chem major so I could have been a pharmacist or done pharmacological research, (or AI research, but neither program accepted me because while my GPA was high, I was in and out due to the medical issues).
I actually made the SPS diagnosis myself. I first told my nurse that I'd done research and I think I have SPS, and she said she didn't think so. At that point, I felt a little embarrassed bringing it up with the doctor, but luckily my dad was at the appointment and asked about it. My neuro thought about it and said it fits, but its so rare she didn't want to get my hopes up. When the test came back positive, she called and asked how I had made the diagnosis.
At first, I had been thinking that maybe the MG was wrong and it was just SPS, but the more I thought about it, the more I realized I really do have both. The eye, jaw and breathing really fit myasthenia; while the back and leg symptoms fit the SPS. My neuro still thinks I have rheumatoid issues on top of this because two doctors have opened up and looked at my joints and said they don't look like the joints of a 32 year old. The rheumatoid dept. at the hospital said I don't, though, which threw a monkey wrench into her plans as she wanted to keep me on TNF blockers as she thinks they have potential to help MG and wanted to use me as a test case as I was already on them. I had to be taken off them when the spondylitis diagnosis was removed. She wants another opinion from a doctor who specializes in RA or spondylitis, though. She thinks the reason the MG and SPS were missed for so long was due to the TNF blockers, even though they were doing a poor job on their own, in combination with other MG meds she thinks they have potential. I don't think she wants me on them if I really don't have the RA/spondylitis, but the orthopedics who performed the surgeries said that something really ain't right with my joints.
Also, I had Rituxan at about the six month point on the Cellcept, and I got a boost from one (or both), but have no way to know which really helped.
I really hope I don't get worse after the surgery, but I think its still worth doing as I can't spend the rest of my life on prednisone, if there's a chance of getting off it. If it hadn't already been scheduled, I might have delayed it and enjoyed my mobility for a while.
Sorry I feel like I've rambled a bit. I just came back from having the central line put in and I'm still a bit dopey on the meds they put me on. I'm going to watch the Nats game and take it easy. Take care.
Jeff