Hope for a good Christmas

December 12, 2009 at 7:16 am

KEDASO, first and foremost, we hope for you a wonderful Christmas. The most important thing in life is the people that we share it with–that we can connect and love.

Two statements of encouragement.
First, you know on the forum several people that have had eyes affected by CIDP–Emily and Julie being the two that I remember most, but quite a number of people have talked about having trouble reading when there was a flare. It seems to me that having the eye muscles affected is a lot more common than neurologist appreciate.

Second, lymphoma in the brain may not be as terrible as CIDP marching forward. At least there are treatments for lymphoma that may work for cure or for a longer quality time including potentially radiation therapy and as that chemotherapies for cancers can also help autoimmune processes due to more profound and different immunosuppression.

As a tiny bit of caution.
Cytoxan is not commonly associated with bone mineral density problems–chronic steroids are and methotrexate is as well. Compression fractures can be associated with cancer including lymphoma that has affected bone marrow or bone. It is also is concerning that you are not hungry that you are losing weight like this. When someone drops weight, you need to think of brain and abdomen and cancer. It may be stress and illness, but it could but if they are really worried about cancer/lymphoma, make sure that your team of doctors think about the possibility of lymphoma in the spine or abdomen.

Just a maybe???
Calcium is important in muscle function and bone strength. Too much calcium in the bloodstream makes people really, really anorexic. If it has not been done, please ask that your calcium level (probably ionized calcium too) is checked. this is a simple blood test and might explain all of this. If there is something, like a change in hormone–perhaps alteration in parathyroid hormone–calcium might be being taken out of bones and into the bloodstream and out of the body. Immobility from weakness also leads to loss of calcium from bone and into the bloodstream. Changes in calcium could make muscles not work well, bone get weak, and could make you anorexic…???? Some of this is low calcium and some high, but there are conditions that give a mixed picture because there are differences in he effects of calcium in the cells and in the bloodstream. Calcium problems such as this can be reversed with a medicine to make the calcium go back into the cells.

WithHope that this is something that can be reversed.