Your Replies

  • January 2, 2014 at 1:20 am

    I have iron deficiency anemia and cidp too. It was discovered while I was having a series of plasma exchange, I had already had several years of ivig. Upper and lower GI both done–both fine. I just assumed the anemia was due to losing blood monthly due to my menstrual cycle, since there was no blood loss anywhere else.

    January 1, 2014 at 3:42 am

    If your weakness is increasing daily then I would go to the ER. Even if you have to drive a little further, go to one with a reputable neurologist affiliated with the hospital. Most likely the hospital would call him in if GBS is suspected.

    October 14, 2013 at 1:43 am

    yes Bny as long as you are young and healthy (other than cidp) it is okay to get the loading dose in two days instead of 5. I did it that way for over two years with no side effects or problems.

    October 12, 2013 at 1:56 am

    I go to Dr Gorson at St Elizabeths in Boston. He is very knowledgable of cidp. As GH mentioned above, it is one of the centers of excellency.

    October 10, 2013 at 5:00 pm

    immune suppressant medication can affect your body’s ability to absorb nutrients. Even though you are eating a lot of protein and nutritious foods, it may be that your body is unable to absorb it. If you are able to reduce your immune suppressant, maybe that will help your protein level.

    August 30, 2013 at 12:33 am

    I continued with the ivig after the steroids, I did have some improvement once getting off the steroids, but still continued to slowly progress from the cidp (if that makes any sense) I was progressing slowly but the prednisone seemed to accelerate the progression and weakness.

    August 29, 2013 at 1:49 am

    I am also one of those who got worse on prednisone. My calve muscles atrophied, I lost weight, walking became more difficult. I was on 60 mg pill form daily. I noiiced the weakness on my fourth day. I should have called my Dr then, but thought it was just side effects of the prednisone, i finished a 2 month trial, then tapered off.
    I had PE, 5 treatments in 8 days. The process itself was not bad, I had problems with my blood pressure dropping extremely low, to the point of passing out during one procedure, other than that no probs.
    Have been on ivig mainly, it’s a lot easier than the PE if yu get the same results from both.

    August 23, 2013 at 1:34 pm

    Jake yes i have still been seeing Dr.Gorson. My experience with him has been good, he seems to have a lot of knowledge of cidp and is up to date on the treatment options. He has written many publications on the disease, when I was searching for a new Dr. I came across a lot written by him (and Dr Dyck from mayo, who I have also seen).
    I would recommend Dr Gorson, others had told me his bedside manner wasn’t good, but I did not find that at all. H3e has always been very pleasant, answered all of my questions and has a fine bedside manner.

    May 28, 2013 at 3:06 am

    glad the ivig is working 🙂 the loading dose is usually done over 5 days, if you are younger,and in good health (other than the cidp) there are Dr’s who will do it over a shorter period, i get the loading dose in two days. When i first got ivig I premedicated with benedryl and tylenol. Now I just drink caffeine—-helps avoid a headache from the infusion.
    hope your next infusion goes a little easier.

    May 5, 2013 at 10:46 pm

    limekat–yes that was Yuehan, he used to give a lot of valuable info on this site. He helped me tremendously with information when i was planning my trip to the mayo clinic.
    I inquired as to how he made out at northwestern too and found out he may be posting on the sct/cidp facebook page.
    That is a very informative page, many posters who used to be on here but have undergone sct are on that page.
    There is also a few cidp groups on facebook, if you have a fb acct and put it in your search engine a few will come up. They are open groups, you can read the posts but cannot comment and join in the discussion unless you join the groups.
    i think i remember reading somewhere that there were plans to improve this site by adding messaging and a search feature. Lori

    May 1, 2013 at 2:20 am

    that was an excellent article GH, very informative, thank you

    April 29, 2013 at 12:28 am

    great news Ann 🙂 what sort of exercises do you do for that? I could really use exercises that help with balance. I have never had physical therapy, I guess even though walking is difficult for me, my dr feels that as long as im still doing it that’s enough therapy??? heading to chicago next month for my next adventure with this confusing disease.
    hope you continue to improve…and i hope the board picks up—with more discussion and less spam

    April 24, 2013 at 11:37 pm

    oh…and i forgot to mention the main reason i answered you—–Most jobs that require their employees to get flu shots, also realize there is a certain population that do not have them due to egg allergies,religious beliefs, or as in your case advised not to by their physician due to other medical reasons.    Maybe you could get a letter from your dr excusing you from the shot….why are they wanting flu shots in April for anyway??? aren’t they usually done in Oct/Nov. ?   Lori

    April 24, 2013 at 11:32 pm

    Linc, anyone who has been through all you have is “worthy to post here” don’t ever feel that way.  i know it doesn’t seem it lately because  there haven’t been many posts or people answering.  This used to be an up and running forum with many members and posts. It shut down for a while and hasnt been so active since.

    Don’t worry about posting under the” wrong “category—you will get used to navigating the site after doing it a while, I’m just glad to see you posting and sharing your experience, it’s helpful to read others stories.   Lori

    April 24, 2013 at 11:20 pm

    I’ve noticed that too Bill. It’s really too bad, because this was such an informational site and so helpful to many.  I feel on the facebook/social media site, the social aspect is there but informative information hard to find.  Here, the information is here but tedious to look for without the search feature.

    the cidp/sct fb page has a nice set up that includes both—easy to find information and discussion, but the cidp fb page is mainly discussion.

    Wish we could have the best of both worlds….this site, with the search feature, private messaging, and a live chat.   🙂   Lori