bOY, THE "MONKEY ON MY BACK" KEEPS GETTING BIGGER!

Merry Christmas Ken!

I’m sure Christmas will be more enjoyable with a wonderful friend coming to visit. I hope her visit will take your mind off your worries somewhat.
I will keep you in my Christmas prayers and hope you will feel better.

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.

oh ken. I am so sorry this is happening to you. I am glad to hear that you are finding joy with others. you have a merry christmas with your loved ones.

Ken,

I wish you happiness. A smile on your face and joy in your heart can erase the pain for a moment. I wish for you a few moments of peace and tranquility.

Take care through the holidays.

Dick S

Ken, Just keep venting away and know that we’re here even when you’re venting and prayers are being said for you. Gary

Ken,

So very sorry to hear you are facing more challenges. My Mom had those compression fractures and she was so frail, like you seem to be. She was in so much pain. I hate to remember this b/c at the time she had these fractures, she was in the city’s worst rehab facility.

She had a procedure where they filled the fractures with a cement type of stuff and they gave her great relief. Hoping this could be an option for you as well.

I hope you enjoy your visit with your long time friend. It always makes the holidays most special when we can share them with ones we love.

You are in my prayers.

Stacey