‘Upgraded’ to CIDP… Second opinion and Alternative treatments…

    • Anonymous
      June 22, 2011 at 6:37 pm

      I have recently been told by my neurologist that I now have CIDP, originally diagnosed with GBS (AIDP) in July, 2009. I had another 5-day load of IVIg, but the doc doesn’t believe that IVIg should be used in the long-term. SO, I will be starting Prednisone tomorrow, unhappily.

      I am not sure where to turn for my second opinion. I am equi-distant to Kansas City and Phoneix (both listed as Centers of Excellence). I live in the Colorado Springs area. I currently see a rehab MD, internist, and neuro in Pueblo. Because they all want to see me regularly and they don’t communicate, I am running around like crazy.

      I also don’t feel like I am being treated like a ‘whole’ person. Yes, I think IVIg is a great option for me. And, I don’t like being on so many drugs. Is it even possible to find integrative and alternative treatments for CIDP? Are there docs that deal with the whole person – taking into consideration that I’d like to control some symptoms through supplements/herbs/vitamins, diet, exercise? I am envisioning somewhere like the Mayo Clinic, maybe.


    • Anonymous
      June 22, 2011 at 9:46 pm

      Thank you for your reply! I don’t necessarily distrust standard treatment, I guess I am stuck feeling like my current docs are not as educated as they could be about CIDP and the protocols therein. I am so unsure about Prednisone because I also am a diabetic, and I haven’t found the greatest resources as pertains to steroids and diabetes.

      As for ‘alternative’, I consider supplements alternative. LOL I would be open to accupuncture and diet changes as well (anti-inflammatory diet?). I agree, substituting alternatives for accepted treatments seems like a long stretch. If I forget my meds in the morning, I am in severe discomfort by mid-morning. It’s scary to even think about being without them. I am also frightened by the idea that for the next 60 years I will be on some very potent meds.

    • Anonymous
      June 22, 2011 at 10:17 pm

      As to the first, regarding 2nd opinions, I like to fly SWA specials to where ever they go for the discount fare of choice (usally $99 or $109) after I score an appointment somewhere. A secondary consideration is will your insurance pay for it and will the Center you choose accept your Insurance?

      As to Integrative and Alternative medicine, the scope of your question is too all encompassing, ranging frrom symptom relief to curing CIDP, is that about right?

      There is a clinical trial for Alpha Lipoic Acid and CIDP. Some folks here, including myself, have tried various combinations of stuff for symptom relief.

      You must find, by trial and error, what works for you while keeping your doctors fully aware of what you are doing (or want to do).

      If you find a doctor who treats you as a whole person, please let me know.

      The trouble is this- heart doctors, neurologist, gastroenterologists, and on and on all treat their own specialty, by design. And, it’s just my observation, watch their eyes glaze over and their ears slam shut if you try to talk about something else then their own specialty.

    • Anonymous
      June 22, 2011 at 10:22 pm

      LOL (((And, it’s just my observation, watch their eyes glaze over and their ears slam shut if you try to talk about something else then their own specialty.)))

      Ain’t that the truth!

    • June 23, 2011 at 9:37 am

      I left my current neurologist and found a CIDP specialist at the U of M. My first neurologist was good and I did not have any problems with her but I felt she did not specialize in CIDP and I was worried I was missing out on first-rate information and treatment if I did not have someone that was REALLY educated on CIDP. So far, so good. My new neurologist seems VERY knowledgable about CIDP. He has given me a few options and wants me to pick my treatment plan. I am currently on IVIG infusions every three weeks. I am having good response so I plan on keeping with the IVIG for now. But he did say that they have a better percentage of people going into remission with pulse steroid treatment. But he knows I am not to open for prednisolone as I was on that drug when I was first diagnosed and i had icky side effects. He said with pulse steroids you get a very large dose all at once usually weekly or monthly and that the side effects usually are less severe. But there are still long-term problems if you stay on them too long. So this is something I will persue in the future if the IVIG is starting to not work. He also mentioned immune supressant drugs as another alternative but they also have side effects and risk of cancer (though the cancer risk is small). But for now I am sticking with IVIG as I don’t get much in side effects. I just wish I did not need it every three weeks…wish I could go longer between. You should find someone who asks you want you want and puts different options on the table for you to discuss for you to make the decision on what is put into your body. I also don’t want to have a lot of unnecessary drugs put into my body if I can get by with less. Less is more in my eyes for treating this disease. I also take B12 and am going to look into getting some alpha-lipolc-acid. It can’t hurt. Good luck.

    • Anonymous
      June 23, 2011 at 1:19 pm

      Allsmiles – It would seem to me your neuro has the treatment options mixed up. IVIG is better long term than steroids are. IVIG has not shown any long term negative effects & steroids come with a LONG list of them. I am also concerned about you taking steroids if you have diabetes. I know steroids can cause type 2 diabetes so I would personally be very leary of taking them.

      Make sure you are using an IVIG that has no added sugars, since you are diabetic.

      I would HIGHLY recommend that you find a new neuro. You need to find a team of dr’s that are willing to work together to treat YOU!

      As far as supplements go…there are vitamins you can take to help with symptoms but you need to treat the underlying disease in order to get full benefit. You do that with an immunosuppressant (such as IVIG). If there was something all natural to help get rid of CIDP I would have been pumping my daughter full of it 5 years ago.

      Montel Williams (the retired talk show host) has a book out about the diet he says helps his MS symptoms. I’m sure if you look on Amazon you can find it.

      Hope that helps a little.