Your Replies

  • September 16, 2017 at 10:03 pm

    Hello, I have very similar symptoms/diagnosis, EXCEPT; the huge center I was going to, after 1 year, ran FNA (fine needle aspiration) fat pad (belly area) tests. They tested in-house, several times, until 1 year later they sent tests to Mayo Clinic, confirmed AL Amyloidosis. And now going to Mayo for 2nd opinion & treatment! This crap makes your joints & bones feel like you’re in a medieval torture chsmber! I also have M spike of IGg multiple myeloma, 30% marrow. (Bone marrow biopsy) Make sure they test & rule out those 2 evils! I also have CIDP inflammation and (polyneuropathy) both legs to hips. I had core biopsies on length of legs, “surface” nerves gone, & had emg (shock-conductance) deep nerves gone both legs/feet.
    I wish You the very best!
    Don’t give up testing process until you have all answers!!!

    May 1, 2017 at 1:36 pm

    One would think it would be like “generic” equivalent, or at least close? I assume that’s (IV of IG) the next thing to try on me. The IV’s of steroid then Aferesis didn’t have any affect. I’ve been diagnosed with Multiple Myeloma & Amyloidosis, as well as CODP & POEMS syndrome. What kinda blows my mind is how they can treat me with IV of IG, when IG is the cancer indicator of myeloma! Weird stuff! Bryan, I pray that the next treatment will You completely restore You! As well as everyone suffering from this awful disease! God bless each & every one of You, in Jesus’ Precious Name, Amen!

    February 18, 2017 at 2:14 pm

    Emet, All,
    I know somewhat of how you feel with multiple diagnoses! I am diagnosed with Type 2 diabetes (for 12 years now), “smoldering” (30% bone marrow) multiple myeloma, amyloidosis (still no “type” identified) & recently, CIDP. I have asked NUMEROUS Drs. the question: is one of the CHRONIC diseases driving, or causing, the other diseases? Are they all tied together as auto-immune diseases? All I get as a reply is “possibly”. I wish you the very best, & a speedy recovery! Kevin-

    February 5, 2017 at 3:59 pm

    Hello, I don’t know if it’s allowed or appropriate to list names on this site, but, here goes! I don’t know what I would have done without the genuine help and understanding (undenyably because of their knowledge) of 2 Incredible People at M.D. Anderson and my Oncologist! At M.D.Anderson, Houston, Texas is: Dr. Karin Woodman and her A.P.N. Christa Seligman. My Oncologist: Dr. Eichler, Texarkana, Texas. His entire Staff, and especially his Onc. RN, Miss Beverly (I Love that Lady) at Texarkana, Texas Christus St. Michael’s. I hope and pray that you are able to find Professionals like these in your area! Kevin-

    February 5, 2017 at 3:34 pm

    The last (2 now) I.V. of steroid “concoction” was administered to me in less than 30 mins! (Instead of the HOUR that was taken on 1st I.V.!) I got a metallic taste in my mouth and “flush” feeling, as well as tingling in face. Reading Ya’lls’ taste experiences makes more sense to me now, makes me feel like I’m really not going crazy and understand this CIDP a little better! Thank You! Kevin-