SandraP
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April 5, 2017 at 3:28 pm
No, I don’t take immune suppressants. I have hypoglobulinemia and my body is unable to produce much in the way of gamma globulin antibodies in the first place. I can’t take high doses of steroid because I have osteopororis and auffered serious bone fractures in 2015. My sacrum is criss-crossed with seven enormous surgical screws/rods to hold it together, and I have fractures in my pelvic ring that never healed properly because of the condition of my bones (my surgeon compared my bones to soda crackers). Steroids would weaken my bones further, and so would so e other drugs. I had never fully recovered my ability to walk unassisted, and was still in constant pain, when the neuropathy hit me, The last two years of my life have been oure hell.
April 5, 2017 at 2:34 amThe comments here (and in other threads) about IVIG frighten me. I had my first round of 5 infusions in March — a very high dose because I have severe CIDP, with a lot of nerve damage in my legs, and was having near-constant stabbing nerve pains down my left leg in particular, so bad that my leg would buckle under me numerous times a day. After the first round of IVIG, the worst of that pain was gone. But I am still so weak and bone-deep fatigued that I can barely make it across a room with the help of a cane. If I try to stand up for more than three minutes, soon I’m trembling all over and drenched in sweat. I can’t do much of anything. I don’t have the strength to go anywhere. I’m now taking my second round of 5 high-dose infusions, and I’m concerned, after reading some of the comments here, that I’ll never regain my strength and get my life back. I’m a professional novelist, and I feel so awful all the time that I haven’t written a word in a year. Just getting to my office and my desktop computer is an ordeal. If this second round doesn’t help at least a little with the fatigue and weakness, I don’t know what I’ll do. My insurance isn’t going to approve a switch to PE. They take a hard line with expensive drugs.
March 30, 2017 at 10:35 pmShe is well-credentialed and works in a respected therapy center I’ve had other therapists who expressed negative personal opinions about specific doctors or medical apecialties. This one also told me I should leave my primary soctor, and she urged me to go to a soctor she recommended. What really irked me was her ordering me to cancel my appointment with the meurologist. She went over the line in several ways. As I said, I haven’t been back to her.
March 30, 2017 at 3:17 amBTW, I didn’t mean to imply there’s no neurological rehab available in the DC area, where I live. There’s plenty, of course, but all the centers concentrate on stroke victims, amputees, etc. — people who have suffered physical trauma. I’m going to call all those near me and question them about treatment of neuropathy-induced problems. My fear is that they may all say sure, we treat that, when they actually have no one on staff with special training.
March 29, 2017 at 10:22 pmThe last therapist I saw, right before my first appointment with my neurologist, was dismayed that my pain doctor was sending to me to a neuro to figure out what was going on. She warned me to stay away from neurologists, who would try to convince me that I had a lot of problems I didn’t have. When I told her I had an appointment the next day, she said, “Well, you have to cancel that appointment.” I haven’t been back to her since. The best PT experience I’ve ever had was with a therapist who had special training in treating joint replacement patients. I worked with her for 4 weeks before my knee surgery to strengthen the muscles supporting the knee, then started again (with a totally different kind of therapy) two days after I got out of the hospital. I sailed through rehab and was cleared to drive three weeks after surgery (and it was my right knee that was replaced). I’d like a therapist who knows neuropathy the way that therapist knew joint replacements.
March 22, 2017 at 4:46 pmI started infusions recently and will soon have my second set of 5 in a row. The infusion nurse stays at the house the entire time. He seems to have a lot of paperwork to do on his laptop, and I think he may be working on further education (we don’t know him well yet) so he stays busy and just checks my BP and other vitals each hour. I had a problem one day when I started bleeding around the puncture site (my skin is thin and fragile and has trouble holding an IV in place) so I was very glad he was present.
