• Anonymous
      December 12, 2009 at 3:08 am

      Hi all,
      You all saw my vent two weeks ago.
      Well, now the docs laid some more bad news on my head.
      I saw my neuro on Tuesday. I told him my ophthalmologist just
      diagnosed me the week before, with Strabismus, (diplopia), which
      I am now seeing double. They are using prisms on my eyeglasses to
      help me see straight. That doc told me to expect it to get worse,
      as he said the CIDP is affecting the nerves controlling the muscles of
      the eyes.
      Well, that didn’t sit well with my neuro. He told me that the Strabismus
      was bad news and this was rare, and he things I may have lesions on my brain on the Cranial Nerves, or worse yet, he said I may have lymphoma
      on the brain.
      GREAT-more news to put under my belt. So, he’s scheduling an MRI, and some blood tests–gotta wait for the insurance approval.

      Then the very next day, I had my visit with my Primary Care Doc. I have been having very bad pain at the end of the day, in my right lower chest, and in my back in the same area. So, he had me get a chest xray before I saw him, and brought the results to him.
      Oh goody–more bad news. The x-ray showed chronic compression fracture deformity mid thoracic spine, of which he said it meant I had thoracic compression fractures. He said it most likely is from being on the chemo for over 2 1/2 years, and that I probably have the bones of a 90-year old woman. They are probably very brittle now from the chemo. So, they are setting up a bone density test–the insurance just approved it.

      Boy, this news just doesn’t want to quit. And my normal chemo is next Friday. I spoke with my Rheum., who is in charge of my chemo, and I told him I wanted to continue.

      A good friend of ours is flying in from Holland, as she thinks this really may be my last Christmas. At least that’s ONE good news for me–she flies in tomorrow, and will be with us for two weeks.

      I do plan to have as best a Christmas as I can–it’s always been my favorite time of year. I know I won’t be eating much–I am losing about 1 pound every 1 or 2 days. Just can’t eat.

      Gotta run-my Frank just yelled at me that it was 12midnight, and I should be in bed…
      Good night to all.

    • December 12, 2009 at 3:27 am

      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.

    • Anonymous
      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.

    • Anonymous
      December 12, 2009 at 11:07 pm

      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.

    • Anonymous
      December 13, 2009 at 3:18 am


      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

    • December 13, 2009 at 9:46 am

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

    • Anonymous
      December 14, 2009 at 8:30 am


      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.