hi D.D. Vette responding to your ???

Discussion in 'Fibromyalgia Main Forum' started by Vette, Jun 24, 2003.

  1. Vette

    Vette New Member

    Hi Debbie, hope you are doing better today and headaches are not intolerable. I don't doubt that your IgG levels will be different with a second opinion, only that another Doc. may have another treatment plan that is not "lifetime" and maybe a totally different take on what the reports mean. Like I wrote yesterday (I think ?), two Rheumatologist I have seen here seem to only know that FMS causes pain and nothing about the "Fog", short term memory, concentration, vertigo, ear pain, etc. I rely on my Shrink for my FMS pretty much as he seems to understand it better than anyone here does just like the mold.
    There are more than one type of IgG test so I can only tell you what my abnormal one was and the fluctuation of it from the first time (pre-treatment), to near normal and from April.
    My abnormal test was; IgG Microsomal Antibody , the normal range for that is below 30 IU/ml, the first one I had over two years ago came back at 969 (U/ml. After several treatments re-testing is done for all sorts of things (we only get the abnormal results sent to us) and I don't know how many have been done that I don't have (litigation you know) results for. The level slowly normalized though my nerve conduction test showed very little re-generation of myelin to my damaged nerves (why they use this in MS as you know). I was dismissed in November last year after my medi-port clogged up, that's why I had 32 doses instead of 36 which would have been three rounds of twelve. The port was removed here by the surgeon who put it in (what a botch job), it's still not normal. I was dismissed from his care because "you are so much better and all of you labs look good, though we weren't able to help your damaged nerves much". Thought I would just stay in that state (not good, not bedridden). It was necessary for a few of us to go back to that Doc. for a follow up in April so Dr. could close cases and finish paperwork. Got a phone call a few weeks later and had had a premonition, I was right. The IgG was at 176 this time but real kicker that got me a new order for IV was Nerve Conduction test done also that day showed new damage in another nerve not seen before. Insurance has denied this new order of 12 doses and it is being appealed. If it goes through I still may not have it done again.
    I was on a gravity drip I.V. (old school, no pump) at home for the first two thirds of treatments and the catheters were in the veins on top of my hands. The solution seeps through the veins at times, mine always did and each time withing about an two hours into the treat. my hand then forearm would begin to swell, get tight, pink and tender (phlebitis). Cold packs & hot packs alternating was the treatment for that. The arm would be almost back to normal then it was time again and we alternated hands each week until all of my veins were shot hence the medi-port placed under the skin in my upper chest.
    IVIG can not safely be run in to you any faster than a four hour period minimum, the orders usually say over a 4 to 6 hour period. It's sometimes hard to keep a gravity drip I.V. at a constant level of drops per minute so sometimes (often) It would all of a sudden run faster until the Nurse or I saw it or I had symptoms like anaphylaxis and we would shut it off, wait a little and start again when I felt better. I told you, I'm a Nurse, we had an emergency kit here for shock and it still scared the H--l out of me each time. Insurance did not want to pay for a portable pump which would keep a steady rate no matter if I moved or not. Yes, for those who know ports, mine was positional so it was still a problem. I threw a fit at the Docs office one visit and ended up with a pump in a fanny pack free to use the rest of the time. Felt very much better then. Usually only felt exhausted after the treatment, next day might feel decent for us and just like when exercising the third day felt like the flu (achey,nausea,etc.) and yes, that happened most every time though once in awhile I got lucky and was "okay". Often I felt bad (in bed)up until two days befor the next one was due just like with the phlebitis. I said I would tell you the truth.
    I know nothing of the Sub-Q and actually thought the alternative to I.V. was done I.M. Like I said, I don't have info on that form.
    As far as Labs go, my Houston Doc. uses Immunosciences Lab Inc. and I don't know that one is better than another. I think they have a website.
    Okay, now I am tired. Our first Grandchild was born Sunday eve. and I have that third day pain in my arms, etc. from holding the Mom's big legs up and out for over an hour with my Son on the other one. FMS did not agree with that but it was well worth it for me.
    I'm here for you Debbie ! I know you're on overload and hope I did not upset you too bad though I probably did. Could have given the soft version but I don't lie and you would have come back on me (maybe!). You could have a totally different experience.
    Peace To You, Vette
  2. Shirl

    Shirl New Member

    Shalom, Shirl
  3. dd

    dd New Member

    Thank you so much for the information. Don't worry, you didn't upset me with the truth about your experiences.

    I hope you are feeling better. How is the new little baby doing? How wonderful that you were able to be there for the birth.

    Sorry you had problems with your port. That could have been very dangerous for you. I've read about the ports and the problems with infections and so on.

    Well, I have an appt. with another Immunologist for a 2nd opinion. I was able to get in the week after next. So that's not too long of a wait. What I really want an opinion on is WILL it really help me to get the treatments. I mean if I am only going to feel marginally better I don't know if the cost is worth it. But, then again I am sure we won't know unless I actually do get the treatments. Decisions, decisions....

    I will keep you updated on the 2nd opinion outcome. If I have anymore questions I hope you don't mind me asking. I find myself thinking of questions then I forget it as fast as I thought of it. I guess I should write them down right away. That brain fog can be so bad sometimes.

    Thanks again...I really appreciate your time...I know you are busy with the new grandbaby.

    Peace and Love,

    Debbie