Yahoo! It’s about time!

    • Anonymous
      July 31, 2008 at 1:55 pm

      I got some good news today! Well at least it is good news for me since I have been suffering and suffering so long with this dreadful nerve damage stuff.
      The neurologist office just called me and they are in the process of working with a doctor in my town to do a Nerve Biopsy. If the nerve biopsy shows up what we think it is, then I finally get treatment. But! I will have to travel 3 hours away and back for treatment at Duke!
      Not sure what kind of treatment just yet until that biopsy get’s done. Say a prayer that this biopsy get’s done really soon. I’m so tired of trying to hang on! :confused:
      I sure hope the news is good news and not bad though! That’s my only fear right now. Hearing the worst!
      But right now hearing anything is better than hearing nothing at all.
      Not even scared either. Just want to start getting things going. I think we all have been in my shoes at some time or another.
      Can’t wait for my husband to get home. Finally some good news at last instead of doctors saying.. Well! You have CIDP! But we can’t find the cause!
      Now I will be excited answering the phone when it rings and the suspense will be killing me!:D

    • Anonymous
      July 31, 2008 at 2:18 pm

      please read this article re: nerve biopsy and cidp–
      i would think twice before doing it!



    • Anonymous
      July 31, 2008 at 2:56 pm

      Hmmm!:( I just read that article and will talk to my doctor about this one. I had a nerve biopsy up North back in 1993. At that time their were no answers as to what was causing my problem. But then I got diagnosed with Lupus. That biopsy actually showed nothing, and after I had that biopsy, I got an attack on my nervous system that was aweful.
      I just had surgery on my spine and after that surgery, I had another massive attack on my nervous system. Totally forgot about what that nerve biopsy did to me back then.
      This is rather scary! In order to maybe get diagnosed, I may end up risking my life doing it. I do plan on talking to my doctor first. Thank-you Alice for showing me this. I am still learning about CIDP and GBS!

    • Anonymous
      July 31, 2008 at 3:15 pm


      I had the nerve biopsy done. It is not fun! BUT if that is what it takes to get answers and treatment then well worth it.

      Mine showed the doctors that I had CIDP for a long time as there was demylation and remylation!

      That part of my foot has no feeling in it…but this can be a good thing if you are feeling pain!

      Rhonda from Canada

    • Anonymous
      July 31, 2008 at 3:21 pm

      Thank-you Rhonda! I really hope they figure out my problem. Being sick is no fun picnic! ๐Ÿ˜€

    • July 31, 2008 at 6:29 pm

      Hi Linda,
      I am a little confused, does not take much these days! Anyway, if the docs KNOW you have cidp as you state, why deo they need the nerve biopsy? The biopsy is not going to give you the cause. The fact that you already have lupus could be a reason, once one has an autoimmune disease, they are more likeley to acquire another, ie cidp. Did the ncv/emg indicate slowed velocities or conduction blocks? What evidence do they give you that says you have cidp? The only thing the biopsy will do is show an attack, a remmitt, from an attack, and another attack. Kind of like the layers of an onion, that is why they call it onion bulbing. Or maybe like the rings of a tree, where each ring represents a year in growth, but in this case each layer would represent a new demylienation process. Some on the site have had difficulty after the biopsy. But, if there is no other evidence to back up cidp, some have to get it to get insurance to ok ivig. Incidentally, I have come across an article that uses ivig for lupus as well. Is it possible to get the lupus doc to order it, that way you could kill two birds with one stone. Good luck, remember, you have to do what you have to do to get treatment, just be sure the docs are right about ordering the biopsy, clarify what they mean about you have cidp, but we don’t know the cause. The cause is not important regarding the relevance of treatment. Lupus could be the cause, a cold, food poisoning your previous biopsy you mentioned in 93. Good luck.
      Dawn Kevies mom

    • Anonymous
      July 31, 2008 at 7:20 pm

      Hi Linda,
      I had a nerve biopsy back in December 2005. I had a local shot [the type you get when you go to the dentist -probably different meds] and the doc made a incision on the outside of my left foot by the ankle bone. I didn’t feel a thing [might be because I had already lost all feeling in that area]. The only problem I experienced was that in site to forever to heal. That was because I was on blood thinners.

      I had all the other test come back positive for CIDP, but they wanted to nerve biopsy any way.

    • Anonymous
      August 1, 2008 at 7:43 am

      Hi Dawn! There are several different kinds of CIDP. They know I have Systemic Lupus, but along with the Lupus, I developed a B-12 Intrinsic Factor, have Osteosporsis, and COPD in a mild form, Asthma and Spinal Stenosis caused from a car accident. The car accident triggered the CIDP. My Lupus labs are not showing much activity but the skin biopsy is showing inflammation. There are two rare things with Lupus that can cause CIDP and one is Vasculitis. A necrotizing vasculitis. I have a positive LDH showing tissue damage and also a positive IGMg, QN Serum. Also I am showing a GFR factor of 50. So I am being a diagnostic challenge. Also have seen some non caring doctors that did nothing for treatment. One of those doctors told me I no longer had lupus and after I did a skin biopsy it showed I still had lupus.
      Because of me having so many problems and labs that are doing opposite of what lupus normally causes, they want the biopsy to see if Lupus is the cause or something else. If it is small vessel vasculitis going on then treatment would be IVG’s. If not then they may have to treat this differently. Lupus can also cause a disease called Amyloidosis. They want to rule out some factors first before treatment because of my labs.
      If I would have been at John Hopkins or University of PA Hospital I would have probably gotten treatment. Two doctors here in my town did a poor job with me and instead of sending me to Duke they ignored me saying I had a B-12 problem that caused the nerve damage. Since then I have shown them that this is not B-12 causing the CIDP.
      The last neurologist that tested me saw a really bad neuropathy. He said it was CIDP but of an unknown etology. Claiming that my lupus might not even be the cause but then it might. So they want the nerve biopsy to rule out anything else before treating me. Even cancer! I don’t think it is cancer but I don’t know.
      For years they said Lupus with possible MS. So they were looking for MS. We now know it’s not MS. I have been a weird one to diagnose. The worst part is that they have been treating me for Lupus all these years giving me Prednisone and other drugs. But the nerve damage keeps progressing.
      They are sending me to the MDA/ALS Clinic at Duke now and I hope they can figure out my problem. I continue to get sicker and sicker and no help for it.
      Something these two other doctors should have done from day one.
      What makes me mad was seeing those two doctors in my town and they did nothing. Kept claiming my lupus was gone and the nerve damage was from the B-12. But then when I had the attack on my nervous system, they then got stumpped. I personally don’t even know if they knew what CIDP was.
      I switched to another doctor and he started testing me all over again. We found lupus and some positive labs and my EMG was horrible. So he is now working on getting me straightened out. Those other two doctors were lousy doctors.
      I even had one of them tell me that Lupus was seen in more blacks than whites and it’s rare for a white person to get lupus. And I have met several whites with Lupus. Go figure that one out! LOL!
      Just looking foward to seeing a final chapter to this and hope it ends with a good ending! ๐Ÿ˜‰

    • Anonymous
      August 1, 2008 at 11:40 pm

      If it means finding out what you have you should do it. My husband did have a nerve biopsy even though we did not feel it was necessary but that is for sure a final showing of what is wrong. The only thing that was bad for him was that he was also on prednisone and Imuran. The steroid made his legs and feet swell. The swelling opened up the incision and he had to start all over again with the healing. He also got sepsis but that had nothing to do with the biopsy but his legs and feet were so bad that once in the hospital his legs started seeping out all the fluid. Once done his legs looked like he had been either a terrible accident or fell into a rasaberry patch. We had already diagnosed it as cidp ourself after our son found out about this foundation. He has been quite helpful for us although he lives in another state.

      Regarding the healing. Our family doc (not the neuro) sent him to someone who works with infections that do not heal. He had a big hole and she would clean it out throughly and showed us how to properly care for it and wrap it.
      Evenually it did heal. Another person I know went to a foot and ankle clinic and they somehow have something that closes it up with suction or something plus surgery.I believe he is still not healed. My husband did not have surgery. As cleansing it twice a day she began to see red dots inside and said that was showing its beginning of the healing process.

      Bottom line is you need a dx. The biopsy does cause numbness but only at the spot. Also sometimes the emgs alone may not help with insurance coverage. A firm dx is needed. We are now going for a 2nd opinion near the end of August at the Cleveland Clinic, since we are originally from Ohio.

      Hope this helps someone

    • Anonymous
      August 2, 2008 at 6:13 am

      It sure has been frustrating to say the least. And not fun getting sicker and sicker. That is what I am hoping for! The IVG’s. What they have me on now only works a few hours and then I am back to misery again. Both of my arms are so tired and I have Carpul Tunnel nerve damage. Shoulders are weak. Parkinsons type of shaking with tremors. Nerve pain with numbness and tingling. And personally sick of testing over and over again. I hate needles too! Dread the needle. But if it makes me better, stick it in and get it done! ๐Ÿ˜€

    • Anonymous
      August 2, 2008 at 2:26 pm

      Linda H
      I hope you do good at Duke. When do you go? I know we have been waiting a long time to go to Cleveland Clinic. I really wanted him to go to Mayo in Rochester but then again we know Cleveland Clinic is good also. They are 6th in the nation on neuropathy. Mayo is first or second.

      We know a young boy who went to Duke for a second opinion who has giloma (turmor in the head) and is now on chemo. He is only 6 years old and has been thru alot. It makes me think about my husband and to know someone so young who has such a positive attitude and is very brave. He knows he is very sick but he loves people and shows alot of faith as well as his mom and dad. His dad is the head basketball coach for Akron University.

      My own family doctor keeps telling me to be positive as my husband is not proactive at all and he counts on me to keep him abreast of things on this support group. I have my own ups and downs. I have had company every week in July, some in June and now my own family has trouble coming with us so busy. Son comming tomorrow as I do need to see them and then after him some more. I Then it is my turn to do for myself. I know it is hard to stay positive but you can do it. Just know that things will get better . I pray for all of us and try to stay positive but it is hard. We can do it.

      Good luck to you Linda H and let us know how things are going for you