Today I went to the Physical Therapist (as usual- Mon, Wed, Friday until March 2012i) and the ‘Orthotist‘ came by I got fit/casted for a leg brace that should enable me to WALK!!!
Check it out, he actually made a cast of my leg –>
Since I have fair control over my hip joint, the ‘brace’ (which will be molded to my thigh and calf areas) will have hydraulics at the knee joint allowing me to bend my knee up to 30 degrees and then lock, simulating or initiating walking. I think it will also have metal bars that run down both sides of my legs in addition the the hydraulic knee.
It will take a week to make- AFTER insurance processes it that is, so I don’t know when I will actually be getting it. However, I did get to pick out the color!!! And it will be a very pretty soft pink colored plastic. Its called a KAFO brace.
I believe it will look something like this->
(but instead of all the grayish stuff it will be pink- maybe?)
So, that was an unexpected but super-exciting visit, because I wasn’t expecting to get fitted for that until next week!!
THEN, I had an appointment with my rheumatologist. He is an AMAZAING doctor, and a very very busy man, and if he weren’t who he were I don’t know how I would have dealt with today. Haha- let me explain. My appointment was at 2:15pm. I left his office at 6:15pm. Now don’t let the wait give you the wrong impression- he gives meaning to the phrase “Worth the wait”… but today was a little excessive. Anywhoo, I’m certainly not complaining. I learned a lot. I got a cortisone shot in my hip! to hopefully remove some of the chronic pain. We are hoping the pain is ‘bursitis‘ secondary to the inflammation of my joints, etc. My hip still hurts, but I’m definitely going to give it some time and see how it works.
So, here is what I found out today: (I apologize in advance if it gets confusing or repetitive and for the big medical words)
I learned (from the rheumatologist telling his intern of the day) that I have a very rare symptom of SLE lupus- in which you may see 1-3 cases per 1000 patients. Apparently lupus can most severely affect two main organs: the kidneys or the brain/spinal cord. Mine chose the CNS (brain/spinal cord). Apparently I have an immense amount of inflammation [Transverse Myelitis] in my spinal cord, specifically at the L1 level- where the lesion is located. According to the doctor, “only a handful of patients have Vasculitis with Systemic Lupus Erythematosus” (SLE). ….and I do.
SO the rare part of it, is associated with my hyperreflexia (basically overactive reflexes-aka if you do the hammer test on my knee I will probably kick you…hard). I have this hyperreflexia due to the tranverse myeltis (inflamation of my spinal cord). And according to the doctor, in general, the people with myelopothy who “survive“ (which I am hoping means recover) are the people who receive CYTOXIN. Which is the chemotherapy drug I got in the hospital! (Good news for me).
I will be scheduled to have the Cytoxin Chemotherapy Infusion for 6 more cycles, starting next week. :) !!! Now, don’t get me wrong… I’m NOT excited to have to go through 7 cycles of chemotherapy- it’s a very aggressive treatment for lupus- but I am excited that it should lead me to recovery. Meaning, I can walk. I can drive. I can do normal things I want to. (if all goes well).
OOOHH and I can’t forget to mention I am officially no longer on 80mg of prednisone a day!!! I am down to a whopping 60mg per day. Still a huge overwhelming amount, but I’ll take whatever decrease-age I can get from that evil drug (which happens to be saving my spinal cord function).
AND if all does go well, once I am “stabilized” (ETA: 6 months) the plan will be to switch me over to CellCept a more “user-friendly” immunosuppresant drug. …Which from what I read, may eliminate the need for steroids.
We will just have to wait and see.