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Your Replies
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June 10, 2017 at 3:42 pm
If you were taking an immune suppressant drug it might contribute to the problem. But I was on an immune suppressant for about three years and had no such problem.
May 9, 2017 at 4:29 pmIt is much too soon to guess how things will turn out, but you should hope for the best. I lost the use of my hands and everything else below the neck for weeks. Today, I am normal above the knees.
To exercise your hands you need TheraPutty, but this may not be the time for it. An occupational therapist can explain the use of this product.
May 4, 2017 at 2:28 pmIt seems to me that he was moved out of the acute hospital too soon, but that’s what hospitals do nowadays. I, too, was discharged early and came back — twice. In my case I was reclassified from GBS to CIDP.
These terms are just labels for symptoms, not the thing itself. Strictly speaking, to be classified as GBS certain conditions must be met. So maybe it isn’t GBS, but that doesn’t mean that they know what it is except that it’s a peripheral neuropathy.
It is true that there is a lot of variation. I was told that I was atypical under either diagnosis, but I’m not GBS so I’m classified CIDP.
Is he getting more IvIg? If the second round helped, why wouldn’t they try a maintenance regimen? Anyway, keep trying to improve the diagnosis and the treatment. These conditions require great patience and perserverance to get through.
May 4, 2017 at 12:49 pmNeuro diagnosis is difficult, but it seems to me you should have received IvIg on the basis of your CSF test, even if it wasn’t especially high. The problem is that IvIg is a scarce resource and expensive, so it has to be rationed.
Why is it not considered to be CIDP?
May 4, 2017 at 12:43 pmThorough and excellent advice from Jim, as usual.
May 4, 2017 at 12:36 pmI haven’t had any difficulty as a Medicare patient, although my condition began before I went on Medicare. When I became eligible for Medicare I also enrolled in a supplemental insurance plan. This compensates for the low Medicare coverage.
May 2, 2017 at 11:42 amFellow, therapists deal with muscle shrinkage by stretching them over a long period of therapy. It can’t be rushed. This can be painful and is the reason some people call them “physical terrorists,” but it need not be that bad. I had an excellent PT. When I entered my final in-patient rehab unit, I was unable to fully extend my legs, i.e. to put my leg completely flat in a supine position without support at the knee. This was due to muscle contraction. The PT corrects this by holding the leg up up and forcing it to straighten. The key is to do it slowly and carefully and stretch it just enough so that the pain is tolerable. Then it is held in that position for some period of time. The procedure is repeated every day until the muscle is back where it should be. It probably took about three weeks for my legs to get stretched out. It can’t be rushed.
A PT who does this too quickly without enough attention to the amount of stretching, might say “it’s supposed to hurt.” It is, but a PT who hurts the patient more than necessary is just not very good at it.
May 2, 2017 at 11:22 amHave you had the spinal fluid test? Your neuro should have ordered this as soon as he had reason to suspect CIDP.
I have Blue Shield of California and had no difficulty getting treatment when I developed CIDP. It probably depends on the particular plan.
May 2, 2017 at 11:16 amIf two neurosurgeons said I was not a candidate for the surgery, I would not want to have it. But I have no experience with stenosis.
April 28, 2017 at 11:22 pmJen, I agree with Jim that you may have neither GBS not CIDP, particularly as you say the spinal fluid test was negative (although that is not definitive). Neuropathies are difficult to diagnose and there is a lot of variation among cases classified as CIDP.
April 28, 2017 at 11:19 pmJim, the study of ALA that you mention was being done at Oregon State University at the Linus Pauling Center.
April 28, 2017 at 11:10 pmJim, unless my information (from Parry and Steinberg) is obsolete, steroids are not given for GBS, only CIDP.
April 23, 2017 at 3:01 pmBy the way, unusual nerve sensations and numbness do not mean that you are relapsing. I have permanent residuals which include those symptoms. The only thing that matters is that my strength holds up.
April 23, 2017 at 2:58 pmfellow, I had one loading dose of IvIg, a five-day regimen, then was sent to rehab. At that point I was classified as GBS. My strength continued to fall, however, so I was soon back in hospital. I was sent to the ICU and given another five-day treatment. Then I was sent to the step-down unit and from there to skilled nursing, with attempted rehab in both places. But I continued to decline and contracted pneumonia. Back to hospital ASAP. Now I was in the ICU again and quadriplegic. I was reclassified as CIDP because my decline had been too long for GBS. I had no more IvIg after that.
After recovering from pneumonia, I was given plasma exchange — nine treatments — after which my strength started to return. I was also put on steroids and a long-term immune suppressant. Those drugs, along with physical therapy, were my only treatment after leaving hospital.
April 19, 2017 at 11:43 pmSure there is, but you haven’t described your history and current condition. There is much variation among CIDP cases. It’s a matter of finding the right fit to your skills and abilities.
