Now What?? Not CIDP

    • Anonymous
      May 10, 2010 at 1:31 pm

      Hi Everybody,

      Well, now I’m totally confused!! O.K., I think the last time I posted
      anything I was going to Wash. Univ. Hosp. in St. Louis to get a second opinion about CIDP/ANTI-MAG Dx, and my treatments since
      my insurance co. denied any more treatments in Feb.. So as it turns
      out, I saw the head of Neuro-Muscular Dept. (Nice man), he did test
      and lots of blood work (16 viles). I also had an EMG, & NC study. About 3 wks. later another Dr. called back and said all (AND I MEAN
      ALL) my test came back normal. I was on the playground at work with about 30 little boys running around me but what I said was well
      that’s wonderful, however does that mean I don’t have CIDP??? He
      said Yes, you don’t have CIDP. Then I asked doe’s that mean the
      last year I got all those treatments, they were for nothing?? He said
      I’m afraid so. OMG, you can imaging my shock!! I then said, if I
      don’t have neuropathy, what the heck is it?? What is causing all
      this pain, tingling, numbness, bone pain, loss of balance, fatigue, tremors, etc., etc., etc.,?? He just said not to giv e up on them yet
      and to keep my next appt. and stay on my pain meds.

      I really don’t know what to think. I’m going to keep this Dr. because he is on my health plan, and I know I’m going to the best Hospital in
      the area,and also the best Dr. meanwhile, Frid. I fell at work, I did trip on a back pack butI had no balance on stopping my fall!! I looked like a giraffe with 2broken legs!! Fell flat on my touche and hit my head!! I still have pain, the pain meds have been helping till last night, I took my morphine before I went to bed but was awake most of the night
      because of pain. I haven’t talked to my old Neuro yet because I can’t believe she would just make all of this up??? about my CIDP DX
      I do remember she told me in the beginning when I asked her how
      she knew it was definitely CIDP and not anything else like MS, she
      told me I met all the criteria and my blood test confirmed it. All I
      really know about my blood work was my ANTI-mag antibodies were
      13,000 and normal was 2,000.

      Thank you all, for letting me vent if anyone has any insight to all this or if anyone has had similar exp. please let me know. I love you all!!!!

    • Anonymous
      May 10, 2010 at 5:57 pm

      Ms. Judy

      Please ignore my other post about neuro.

      I didn’t see this message until after I posted the last one.

      Is it possible to get a copy of all your other tests from 1st neuro and give to new neuro?

      Hopefully the new docs can give you some answers if not CIDP then what?

      Try to smile each day…give you less wrinkles then frowning 😀

      Take care,

      Rhonda from Canada

    • Anonymous
      May 10, 2010 at 7:58 pm

      Ms. Judy,

      This must absolutely knock you for a loop. I assume your previous neuro did the nerve velocity conductivity and the EMG. That should have been definitive. Please keep us posted. I am very curious to know what your new neuro thinks you have. Maybe a third opinion is in order??

      Good luck, Ms. Judy.


    • Anonymous
      May 13, 2010 at 12:25 pm

      I did take all that I had with me, and I told them I had previous records but they did not want them?? They said they would rather
      start fresh???. I really don’t get it. And so sorry I got it wrong,
      I was on 95 grams of gammaguard through IVIG treatment which
      took about 7 hrs. to complete. The biggest question I have is could
      I have had CIDP and the treatments made it go away??? I am calling my old neuro today and will request records sent. Thank you
      I still feel like I don’t know much even though I do keep up with
      your threads. I go back to see the new guy in Aug. Now I think they
      must think I really am a quack!!! I think Elmo and I are twins.

    • Anonymous
      May 13, 2010 at 2:30 pm

      Ms. Judy, Good luck trying to get a diagnosis. I know how frustrating that is! I was told “mild” GBS, but I think the doctors were and are stumped. I am going to a rheumatologist soon to try this angle.

      One other thing I was thinking about yesterday was that I have noticed that there are several teachers on here. I was wondering if because you are bombarded by all kinds of children’s illnesses/viruses, if this causes these autoimmune diseases because your body is constantly trying to fight these things off. I do know a lot of teachers who don’t have these issues, but it just crossed my mind.

    • Anonymous
      May 13, 2010 at 3:06 pm

      [QUOTE=ms. judy]Rhonda,
      I did take all that I had with me, and I told them I had previous records but they did not want them?? They said they would rather
      start fresh???. I really don’t get it. [COLOR=”Blue”]That makes no sense! Why would you want to re do tests/procedures if they already proved an illness? Sounds like a way to scam more money to me!!!???? :confused: [/COLOR]

      And so sorry I got it wrong,
      I was on 95 grams of gammaguard through IVIG treatment which
      took about 7 hrs. to complete. [COLOR=”blue”] about the same as me!;) [/COLOR]

      The biggest question I have is could
      I have had CIDP and the treatments made it go away??? [COLOR=”blue”]That is a possiblitiy that your nerves are rehealing and that you don’t have the same symptoms. Do you have any pain? How do you feel?[/COLOR]

      I am calling my old neuro today and will request records sent. Thank you [COLOR=”blue”]Can they recommend a neuro that is covered by your health insurance? [/COLOR]

      I still feel like I don’t know much even though I do keep up with
      your threads. [COLOR=”blue”]Keep reading and asking questions, that is how I am learning as well![/COLOR]

      I go back to see the new guy in Aug. [COLOR=”blue”]Is he familiar with CIDP? If not you still have time to find someone that you feel more comfortable with…you need to work as a team with your medical doctors. That is the only way to go! If you are dreading to go see a doctor you will cause stress and discomfort and that is not right![/COLOR]

      Now I think they must think I really am a quack!!! [COLOR=”blue”]Who cares what they think!!! As long as you feel comfortable that they know what they are doing. If not find someone else![/COLOR]

      I think Elmo and I are twins.[/QUOTE]

      [COLOR=”blue”]Keep your chin up and keep looking for answers. Never give up

      Rhonda from Canada![/COLOR]

    • Anonymous
      May 21, 2010 at 2:47 pm

      ms. judy,

      Yes, I could say my case is similar. Although the big difference is, I didn’t get a diagnosis until last year. Consequently, I was ineligible for some studies because i did not have a cidp diagnosis.

      I suggest you read these links. Yes, they are long and complicated, but they might help you understand what we are up against.

      I refer to this part of the above link- “Unfortunately, because of the lack of clarity with regard to diagnostic criteria for CIDP, many patients remain untreated.”

      The two sentences below excerpted from this link really sum up the problem:

      “Therefore, although patients may not meet the diagnostic criteria for inclusion in clinical trials of CIDP, they may still benefit from current and future treatments used in CIDP.”

      What does it all mean? There’s lots of things you could have. You might not even meet the strict defined criteria for a diagnosis of CIDP. As I recall, the criteria scores fall into three categories-
      1. Yes, you’ve got CIDP.
      2. Well, you’ve probably got CIDP.
      3. Uh, gee, you’ve possibly got CIDP. SO, I SAY REFER TO THE ABOVE “..may still benefit…”

      And then there’s this:

      How is my case similar to yours?
      1. A major clinic location said I did not have CIDP.
      2. An MDA specialist was willing, and did, prescribe a course of IVIG for me and then, after 5 months stopped the treatment.
      3. A second major medical clinic (Mayo) suggested my previous infusion was neither strong enough nor given often enough.

      What’s the bottom line? After a 9 month gap I restarted IVIG and although there is no “whoop de do” recovery, I am no longer declining and grip strength in both hands has, and continues, to improve. The current course of treatment extends the previous 6 months’ infusions by an additional 12 months with the addition of an anti-rejection agent, Imuran.

      It is not easy to decide what to do. But, we all need to keep learning and keep fighting and keep finding the best doctors we can. Good luck.

    • Anonymous
      August 3, 2010 at 2:20 pm

      Ms. Judy, I think I would try to get an appointment at KU Med Center in Kansas City, Kansas. They are part of the excellence program with the foundation. I realize it is 165-170 miles to KC and the Med Center is just across the state line by about 8 miles at 18th street and Southwest Trafficway, but they teach doctors about these diseases and when I called them they referred me to the U of Texas Health Science Center. I was 340 miles closer to U of T. I am very familiar with KU, after all I am a KU grad.
      God Bless.

    • Anonymous
      August 4, 2010 at 11:20 am

      O.K. this is it and I’m sticking to it. My 3rd new neuro, whom I like very much
      and is on my insurance plan confirmed my original DX of CIDP w/anti-mag.
      I’m back on my treatments now 95gm of Gammaguard 1xmth. I just had my
      2nd treatment on Aug. 2, so we’ll see how they go. Last week was the
      first time I had to use a cane to get around in public. Went to Ozarks, it was great but very tired and very unsteady. Feel better after treatment thank goodness. I’m worried about going back to school this year. Wonder if I’m
      trying to kid myself into thinking I’m feeling better than my body is telling me
      I’m feeling. I keep thinking maybe my treatments will start helping me like they did last time. I just get so fatigued ater about noon. Thanks again for
      your replies everyone, you’r all so helpful and kind and I want you to know how lucky I feel to have you all.

      Miss Judy
      DX 08 CIDP w/anti-mag

    • Anonymous
      August 4, 2010 at 4:09 pm

      Miss Judy, good luck to you with this neuro. We’ll keep you in our prayers and God Bless.

    • Anonymous
      August 28, 2010 at 1:42 am

      I recently finished 7 every other month treatments with IGG, with no improve-
      ment in my balance, or ability to walk. However, the problems have not pro-
      gressed. It has been recommended, that I go to a big city treatment center
      for further evaluation, and possible physical therapy, because my neurologist
      is not sure, that something else might be going on, since I did not respond
      positively to the IGG treatments. My main problem now, is mild pain in the
      upper thigh,that keeps me awake at night. Over the counter meds do not
      touch it, and tramadol, that I take for pain, causes swelling in my feet, and
      other side effects. It is also not recommended for long term use, and I have
      been using it for about three months. I was diagnosed with CIDP a year and
      a half ago, but get little information about symptoms, and what to expect.
      I don’t know, if the upper leg pain is from the neuropathy, or totally unre-
      lated. I get the strong feeling, that doctors don’t know much about CIDP.
      In fact, one doctor told me, that there is not usually pain associated with
      my condition. Yet, many people on the forum talk of significant pain. I was
      in excellent health, until this problem with balance, and walking, and lack of
      sleep for the past three months has been a significant problem. I also had
      periods of serious day time pain, but it gradually went away, leaving me with
      pain, that goes away, when I sit up for a few minutes, but comes back after
      awhile, when I lie back down. X-rays, and an MRI show nothing wrong. It is
      very frustrating, as there has to be a reason for pain.

    • Anonymous
      August 29, 2010 at 10:12 pm

      Hi Gail,
      I’m glad you’re with us, not glad why you are here but you’ll find lot’s of comfort in this forum and lot’s of good inormation. Last Frid. I went in for
      another NCS and EMG. I passed my nerve test, not so sure about the muscles. Doc said he would look at my anti- mag blood work (which he didn’t have back yet) and these test results and talk again with me on Thurs. when
      I go in for my IVIG treatment. I think he is going to do a skin biopsy next. He
      said he really wants to get to the bottom of this and figure out what I have.
      My bottom lip has gone numb now and my right eye. I no longer feel the
      drops I put in my eyes at night. I think my P.T. has helped me with some
      strenght in my legs, my balance is still bad, but not worse. Mornings are good
      for me but around noon I hit a bottom. I still have pain, and lot’s of fatigue. The bone pain isn’t as bad but now I’m getting really bad joint pain. I take neurontin 200mg at night and trazadone to help me sleep and for pain, but I still woke up screaming from pain in my hip the other night. Today, my right arm hurt from the shoulder all the way down for the longest time. This happened twice, it felt like someone was trying to yank it out of it’s socket!! SOB it hurt!! I will be seeing a psycologist who specializes in chronic pain tommorrow. Need to learn how to live with this, I don’t want to get depressed like I did a few months ago. We got to keep our chins up even when it’s hard to do. I just keep smiling because I have not idea whats going

      Mrs. Judy