Totally confused! HELP!

    • Anonymous
      October 11, 2009 at 9:12 pm

      Hi everyone,
      I have several other posts about Rituxan and CIDP. I had been told by my Reumatology/Immunologist for the past 6 years that I have Fibromyalgia and CIDP. We have tried IVIG and other treatment without much success. My Doctor made that diagnosis based on my Sed rate, CRP, electrical conduction study, etc. A biopsy and spinal tap were not conclusive.

      I decided to go for a consult to Neurologist Dr. Michael Graves at UCLA. The first time I went he spent a lot of time taking my history, information, asking ?s and then examining me. I went back last week for a nerve and muscle conduction study. To my surprise he said they were fine! The other 3 studies, in years passed, showed nerve problems and were used for a CIDP diagnosis. Now, Dr. Graves says he disagrees with my other Doctor. He says I don’t have CIDP. He went crazy when I told him about Rituxan. He said, “Your doctor wants to kill you! Absolutely no!”

      He doesn’t know what I have. He has referred me back to a Rheumatologist. I have never been so confused. The pain and fatique I have are terrible. There are days that I can’t get out of bed. I am hypothryroid and take Synthroid. My hands shake and my feet are blue. Sometimes they don’t want to hold me up. If I don’t have CIDP then what in earth do I have? How do I find out?

      I just read another blog about getting diagnosed. It breaks my heart. It’s so frustrating. Can Fibromyalgia cause high Sed Rates and CRP? Can it cause burning in my feet and unsteadiness? Dr. Graves thought it “was some kind of Pheripeal Neuropathy. He also stated it could be Polymyalgia Rheumatica which I disagree with because that usually goes away with Cordisone treatment. This has been with me for several years now.

      I can’t have treatment without a correct diagnosis. I can’t seem to get a diagnosis. I am out of ideas. What do I do now? If you have any ideas please write. By the way, my Vitamin D was low and I am told that is very important for muscle and joint pain. Please have your Vitamin D checked. If it’s low, you can purchase it over the counter. I did learn that.

      Thanks again for listening. I hope everyone has a good week! What would we do if we could do ANYTHING????

      Take care,
      Sandila :confused:

    • Anonymous
      October 12, 2009 at 6:35 am

      Sandila I think inflammation can cause both of those to be higher than normal regardless of the cause of the inflammation. I don’t know much about fibromyalgia so I can’t help you with the symptoms but I’m fairly certain it involves inflammation. I don’t necessarily disagree with you going back to a Rheumatologist as they tend to have more tools and tests at their disposal for diagnosing rare autoimmune diseases. I looked at my Rheumatologist as the one panning for gold… looking for clues… and when his gold/information pointed back towards neurology he helped me put together a package and get in to see one of the best. I went back and forth between Rheum and Neuro so many times thats when I started calling it the Medical Mystery Tour but without the information and support of my Rheumatologist I think it would have taken even longer than the 2 years it did. 🙂

    • Anonymous
      October 12, 2009 at 5:30 pm

      You probably already know this, but just in case…Vitamin D is a “fat-soluble” (sp?) vitamin…meaning it’s stored in your body. It’s not like the “B” family, for example, where if you take too much, your body just “eliminates” it via urine. You can get too much Vitamin A, D, and E, so be careful with your dosages. My wife’s a big, BIG Vitamin D proponent, and has shared countless articles with me about the “epidemic” levels of low-vitamin D counts in the US.

      An interesting side-note, my wife sent an e-mail to the CDC asking about the H1N1 vaccine. She wanted to know why they will only give the injectable type (dead-virus) to people over age 49. Got quite a lengthy response from them, which surprised her. During their response, they stated one reason for flu to be a bigger problem in the winter months: According to them, it’s because everyone’s Vitamin D levels drop, and it’s a natural defense to influenza. Most of us get all the Vitamin D we need if we’re out in the sun a lot, which is more likely in the summer.

      So, to those who said they weren’t going to take the flu shot…might want to start taking your vitamin D supplements! Just a thought…

    • Anonymous
      October 12, 2009 at 6:44 pm

      I wonder if you would share your diagnosis with me? Maybe it’s not unusual to bounce back and forth from a Rheumatologist and Neurologist. I just know that it’s not a good idea to start Rutoxin without a diagnosis. I don’t know where to go from here. Why does it have to be so hard?
      Thanks so much.

    • Anonymous
      October 12, 2009 at 7:27 pm

      Fibromyalgia seems to be in the middle of neuros and reumos.
      For the neuros does not exist. For the reumos is a kind of arthritis
      they can no explain, with pain, numbness, fatigue, but
      with no inflammation, no high SED rate.
      I have not find on the web any serious paper or survey about fibro,
      as reumaotid arthritis, lupus CIDP, MS or ALS.

    • Anonymous
      October 12, 2009 at 11:25 pm

      wow. you sound like me. I am in neuro/rheumy no mans land and I had the diagnosis of cidp snatched away given back and then snatched away again. it cant occur to them that autoimmune diseases can overlap. maybe there are two different illnesses at play and thats why it is so confusing. I wish I had answers for you and everyone else desparately searching the internet, trying to pick up where the doctors have failed us but falling short because we have the knowledge but not the credibility. I wish I had answers. god bless

    • Anonymous
      October 13, 2009 at 5:54 am

      I wonder if you would share your diagnosis with me? Maybe it’s not unusual to bounce back and forth from a Rheumatologist and Neurologist. I just know that it’s not a good idea to start Rutoxin without a diagnosis. I don’t know where to go from here. Why does it have to be so hard?
      Thanks so much.

      I have CIDP with cranial and autonomic nerve involvement… rare but not unique to this forum. The autonomic and cranial nerve damage caused most of the going back and forth as they were unusual symptoms for CIDP – especially the elevated temperature which confused even my Hopkins neuro at first.

    • Anonymous
      October 13, 2009 at 10:29 am

      I have hope after reading your post. At least your doctor is trying to get a dx, some doctors would drop you off at the curb! My daughter in also neuro/rheu as she has cidp and arthritis from Fifths disease which is the virus that caused the cidp. She gets ivig and her neuro says that will take care of the cidp and the arthritis and IT HAS. HE is a genius. The rheumatologist is amazed that ivig has helped the arthritis. She is speechless.
      My daughter is sitting here and we are going to pray right now that they figure out what is going on with you!

    • Anonymous
      October 13, 2009 at 11:05 am

      From what I have read on Fibromyalgia, which honestly hasn’t been a lot, it’s a diagnosis made after nothing else fits.

      There isn’t a blood test to determine if you have it. Apparently there are 18 different pressure points affected by Fibro – if you have 11 of them affected then you can be given a Fibro dx.

      Fibromyalgia diagnosis are apparently very controversial.

      I just spent some time Google’ing Fibro & nothing I read said anything about the SED rate or CRP being high.

      I think you should get a 2nd opinion.


    • Anonymous
      October 13, 2009 at 12:38 pm

      I do have pain in the 18 fibro tender points.
      But that menas I have fibro?

      The problem with our sytmptoms is that they fit a lot syndromes,
      like RSD (Reflex Sympathic Distrofia) that is diagnosed by traumatologist,
      or spondylitis diagnosed by reumatologist,

      I have Dr. Bauer book from Germany. He says, fibro is pain from the nerve fiber passing in the muscles
      and fascias, the hole where the nerve pass thru is stucked by an autoimmune reaction.
      On the web there is also lot of info about polymer antibodies testing for fibro.
      They blame the breast implants for a silicon antigen producing the antibodies.

    • Anonymous
      October 13, 2009 at 6:42 pm

      Hi everyone,

      Tara, I think that we are at the same place. I believe that my
      Fibromyalgia diagnosis is correct. I have pain in 13 of the different
      tender points areas. I also believe that I do have a Neuropathy in
      addition. That explains my very high CRP and Sed Rate and other
      symptoms. I too have had the CIDP diagnosis given, snatched away,
      given & snatched away. I have been tossed between Neurologists
      and Rheumatologists. I am going in circles.

      I commend you on taking the initiative to get into Mayo Clinic.
      I will be very anxious to see what happens. When are you going?
      I hope that someone is going with you for support. Please keep in

      Thanks to everyone for your feedback! This is such a great forum.
      I love all the people on it. You are so supportive! I wish we could
      all meet for a huge group hug and a lot of talk!!!!

      Thanks again.
      Sandila 😉

    • Anonymous
      October 13, 2009 at 6:59 pm

      I was taken aback when you mentioned an extremely high CRP. My doctors sent me in 3 times because they had never heard of a CRP of 189! How high was yours? Do you have your story posted somewhere so I can read aboeut your diagnosis?
      I learn so much on this site.
      Thank you all for sharing.

    • Anonymous
      December 27, 2009 at 5:05 pm

      Hi everyone,
      I want to thank you for sharing all this information with
      me! I really appreciate everything you write.

      I have a question about Vitamin D that Elmo mentioned.
      I think it is an important vitamin for us to take because
      it does effect muscle and joints. Does anyone know
      what dosage would be correct? I already take Calcium
      that has 600 mg of Vitamin D in it. I am just not sure
      what the recommended dosage is. Do any of you take
      Vitamin D? When my Rheumatologist tested me, it came
      back a little below normal.

      What about other vitamins? Are any of them real
      helpful for us? There are so many out there. It’s
      a billion $ industry in this country alone! I do know
      from my research that some of them can do more
      harm than good. They too can have their side effects.

      Thanks again for your feedback! Let’s have a better
      New Year!!!

      Sandila :confused:

    • Anonymous
      December 27, 2009 at 7:39 pm

      Of the calcium w/the 600 mg of D added to it, I mean. To truly asorb the calcium you need first one that also has magnesium in it, plus the ‘D’. Or it’ll just go thru you. Strangely, and almost contradictorily tho, the Magnesium helps a person to asorb better the calcium and thus the D. Web up the types of calciums and ‘d’s and ‘mags’ one should take. IF you take a multi-vitamin tho? Avoid any other supplements that ‘throw in’ extra B-6! It’s easy to get too much! I’d been on a combo of supplements and found I’d been getting well over FIVE TIMES the B-6 that was the max daily requirement! By trying to help myself, I was hurting myself, nerve wise badly. My multi-vitamin these days is a pre-natal one, as that’s got hardly any B-6 at all [apparently it’s not too good for babies either?] But it’s got a lot of other needed supplements [but you still need more calcium etc.], especially trace elements that are useful.
      B-12 is great for nerve regrowth as is B-1, Omega fish oil tabs are good as well. Just try to read that teeny tiny print on the labels and keep track of all the unwanted ‘extras’ that are thrown into supplements that you don’t need, nor should be taking.
      I hope this helps a little bit? I don’t pretend to be an expert by ANY means, just sharing what I’ve learned from others and a lot of research!
      Don’t forget meds such as neurontin, lyrica and a bunch of others DO deplete calcium intake, read up the ‘prescribing information’ on these meds and the side effects as well – it’s eye opening! What helps us can hurt us in other ways and it pays to have a clue what is going on.

    • Anonymous
      December 31, 2009 at 4:43 am

      WOW! It’s like reading my own story! How sad is it that a doctor would belittle and change the treatment of another doctor without picking up the phone and speaking to him/her first!!!! The whole “He’s going to kill you” is obsurd and enethical. You are a patient lookng for answers, not nightmares! I have CIDP. 1 doctor diagnosed me and the next 6 years where spent at the Univ. of Miami trying to disprove my doctor. They didn’t have a diagnosis for my, but were confident enough to tell me the my dr. was wrong. I went with my gut and kept my doctor as my common ground. He is intelligent and I trust him so I went on the hunt. I would see about 6 doctors and bring him the records and I basically made him explain to me why the six dr’s (who by the way all had different dx’s) were wrong. Then I would go to another 6. It was amazing to me the things I was diagnosed with and the difference in reflexes from dr to dr when I knew I had none, I was listed as +3 or +2. It was like the notes didn’t match the patient. Tt is a long, complicated road.
      Take his results to your current MD and talk about the results/possibilities. I personally don’t think you should take and nedication because of another doctors knee jerk reaction to your current treatment. And his banter was uncalled for……. get a second and third opinion with all your records. It might be time for the drawing board again, although I think you were headed in the right dirrection a few months ago…….
      Best of luck….