Reply To: my rituxin experience

I have failed IVIg terrible reaction made my symptoms worse which I was on for at least 4 months ohhh I think of that terrible time, plasma exchange same thing rev’d my immune sytem up, imuran same, MTX & prednisone did nothing so let me get this straight you live in Maine…ok I live in Rhode Island my immunologist and hematologist are in MA ….What type docs are you running with? I believe they will try their best to get me this med I am in fairly tough shape my RA factor has been slightly elevated at times also but I may have more than one thing going on as things have been positive then negative I have even had a positive p-anca which may qualify but that has since gone neg I have co occuring hematological disorders just like that piece about CIDP about the people in Italy have you read that?

I have BC/BS a PPO in RI I also have had very high elevated auto antibodies along with very high immune complexes, ACE levels…..my disease stems from an immune medicated systemic disease which means autoimmune subclasses that are not all identified …I cannot even work my wife has the coverage …What part of BCBS benied you was it Wellmart of BC/BS?????

are you getting it covered now?  They just do not understand…it is like Shakespeare said “when this body did contain a spirit a kingdom for it was to small to abound”  Best…..keep me informed as I will you Thank you Lori

oh lol because I do not have a confirmed diagnosis to account for the diseases cause unknown  MetLife has not paid me disability payments CIDP is an immune mediated inflammatory disease – immune system that is why I asked if you have an immunologist it is usally idopathic this also mentions some other treatments

http://en.wikipedia.org/wiki/Chronic_inflammatory_demyelinating_polyneuropathy

The lawyer I have hired to represent me to collect my MetLife disability payments is clueless and they think I am “undiagnosed” because unknown etiolgoy so I must have a teleconference with the judge, Met’s lawyer and my lawyer this week coming up…..I am so dam prepared I even spoke to my immunologist who is a new doc and he said he will back me if needed …I have not had sucess with docs but may have found two gems we will see…. if anything will help…….my contract for disability says I am to see a doc with relevant training and experience to treat me needless to say an immunologist,  there is also a Supreme Court case that basically says the same thing in order for an insurance company to deny me benefits they must consult with a doctor or should I say specialist with the same background…Met Life consulted with a pulmonologist a lung doctor and he is the reason I have been denied  they should have consulted with an immunologist I am not sure what the outcome will be but with the Supreme Court and my disability contract backing me maybe a good shot nothing is a sure thing but we will see……I had to fire my first lawyer his law firm been doing this for years and they misinterpreted the contract if I win I will deal with them later and if I win I will deal with my current lawyer about his fees later as he is suppose to be the expert he left out such an instrumental piece of my brief I had to tell him ….I used to be a VP at a big bank dealt with tax regs, contracts all this stuff I think they thought I was some smuck off the street and I have not and will not budge I am on SSDI but I have a young family and SSDI is nothing compared to what I made as a VP all this just pisses me off and I know I am not they only one and wish I could be a voice for many if I do get well just that glimmer of hope I always planned going to law school hopefully I am so hoping by the summer oh well …I will speak to my immunologist about this rituxan for CIDP, I know the hematologist says RA would be covered then I asked what about CIDP, he was not sure he deals with cancer etc…. I hate being sick and some times want to give up the battle oh God do I but when I can I can muster up some energy the disease I have is on the spectrum of SLE …I have a great piece on diseases of autoimmunity it you care to read it it mentions disease that are organ specific that is why they are or may be more identifiable where non organ specific diseases are systemic and not so identifiable and keep creating more auto anti bodies …I need this stuff for my MetLife thing …I would give it all away if I could take my children up by the Saco River in Maine again….lol sorry for the length but sometimes even the smallest words are encouraging……knowing that their is life out there…..and hoping once again to experience it and not have to fight for it

Thank you again

Raymond