agause

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  • agause
    June 4, 2015 at 3:43 pm

    Here is an update:

    I spent 10 days in the hospital in April having Plasmapheresis done. The experience was nothing like I thought it would be. Many act like it’s painful. And to some it may be if they are prone to high anxiety or have a very low pain threshold. You do get tired of the needle sticks for blood work everyday, sometimes twice a day. For what it was, it was quite pleasant. I did find that I am allergic to latex and adhesives. Be mindful of your blood pressure. Mine dipped really low a few times. Avoid Benedryl as it will lower your BP.

    Unfortunately, it did not help me with the symptoms. Maybe I went too long before being diagnosed.

    A few weeks ago, I underwent my first 5 days of IVIg. It too wasn’t a bad experience. I did get fever and chills one night. But I was diligent in staying well hydrated. That is the best thing you can do for yourself. Drink lots of water beginning a few days before through a few days after. Again, drink lots of water throughout.

    I go for another round next week. So far, not much has changed. But I know it can take a while. While my employer was been very accommodating by allowing me to work from home, that has run out. As of Monday, I will be on unpaid leave while I wait for short-term and then long-term disability to kick in.

    I know I included information that was not asked for in this thread. I just figured someone reading it one day may be wondering.

    agause
    April 7, 2015 at 10:44 am

    Hello all! My name is Arthur. I was just diagnosed on 4/3/2015 after years of slowly progressing muscular weakness and pain, beginning in 2007 . I have had MRIs, blood tests, a biopsy, prednisone and a host of incorrect diagnosis (still have bills for all of this). It was not until late last year when I began to experience chronic weakness and loss of strength in my shoulders and legs (began tripping and finding it more difficult to walk) that I knew I had to become more aggressive in finding out what was wrong.

    In January, my primary prescribed prednisone while trying to find an opening at any local neurology clinic. It helped while I was on the full taper dose. Once I tapered off, the symptoms returned with a vengeance. Now I was experiencing tingling and weakness in my hands and feet. This progressed to foot drop then my calves stopped working. Now I can barely walk without a stick. I cannot open jars and even struggle opening snack bags, like I need to do that! 🙂

    I was finally able to get an appointment with a local neurologist. This was only after constant calling by my wife, my primary and other concerned friends. If they had not helped, I would still be waiting for an appointment scheduled for May! They did the conduction study and EMG. No doubt about it. I was diagnosed with CIDP!

    Now I am waiting for the insurance company to approve treatment. The Neurologist want to start with a week of Plasmapheresis. Then move to IVIg if necessary.