After a 2nd opinion, my diagnosis was changed from MADSAM to CIDP. Was in the hospital with Pnuemonia. While I was in, I found out I have type 2 Diabetes (insulin-dependent)..and that it is sterois-induced. My Neuro put me back on Prednisone (60mg) about a month ago (3 weeks before hospital stay), because it works to at least strengthen my lower body and lessen nerve pain and tingles.
Trying to regulate my blood sugar is a real challenge. Besides diet, I take two oral meds (Metformin and Glyceride), stick myself four times a day..then 30 units of Insulin before I go to bed. I want to go off the Prednisone, but then I'll be back to nothing, except Gabapentin to help the symptoms. I still feel weak, but not as weak as before the Prednisone. I've also had IVIg, Imuran. IVIg did not work as well as the doc had hoped and Imuran made me so ill. Any suggestions for other possible treatments would be appreciated. Unfortunately stem cell treatment is not an option, since we are lower middle-class with just a little retirement nest-egg..and our insurance will not cover it.
Also, I feel weaker anytime I eat a meal. Does this happen to you?
I feel weaker after eating, too. I have NOT been diagnosed with diabetes, but get the sweats and extreme weaknessafter eating. If we are in a restaurant, I can barely make it o the car.
Hello DocMac, and thank you for your response. If you haven't already, you should be checked for Diabetes, especially if you are on a steroid for CIDP. I understand the extreme weakness after eating..and- in a restaurant, especially, it's difficult to get up from my seat. My sweet husband helps me up. Yes, I see, you certainly do have a double challenge with the Fuchs Dystrophy. At least you have a valid excuse for a typo now and again. God bless you.
DocMac said:
Sorry for the typos in my posts. I am legally blind with Fuchs Dystriphy in addition to CIDP. Double challenging.
Hello Mashrub. I appreciate your response. No, I haven't tried plasmapheresis or the meds you mention. I visit my Neuro on Monday, so I will talk to him about tapering me off Prednisone and trying the treatement and/or Cellcept and Rituxin. Have you taken these meds? If so, has one of them worked for you? Thank you so much for the info.
Mashrub said:
Have you tried plasmapheresis? Or any other immunosuppressants other than Imuran, such as Cellcept or Rituxan?
Hi Linda, I have done Cellcept for a little over a year and it did me no good, but its different for everyone. It is very expensive too, $1000.00 a month w/o my husbands (then) insurance. I've also done Methotrexate, 3 pills once a week and all I got out of it was a gastric bleed and Barrett's Esophagus. Treating this disease is such a mystery, because were all unique in our symptoms, I am to the point now because of adverse reactions to most treatments for CIDP, I don't want to go to the doctors anymore. There really doesn't seem like much left that they can do. I hope you have a doctor you are secure with and trust wholeheartedly. I wish you the very best!!!~Blessings, Char
Hi Char, and thank you for sharing your experience. My insurance (Aetna) may or may not cover Cellcept, since it's so expensive. There have been meds that I have needed that are not in their formulary. Unfortunately, Methotrexate is out, since I also have Crohn's disease. I can empathize with what you must be going through, and I'm sorry for any pain and weakness you experience. I really want to be well/healthy. It's difficult, because of the 3 biggies (CIDP, Diabetes, Chrohns and cervical dystonia. One seems to affect the other..and some meds decrease the effectiveness of others. Thank you again for thoughtful well-wishes! God bless you. Linda
First, you need to correct your Neuro and provide him the more updated (Post-1975) info on CIDP. The use of the term "MADSAM" shows he is not using the most recent references. "MADSAM" is now known as "Lewis-Sumner Variant (or Syndrome) CIDP", so you were already diagnosed with CIDP before they changed your diagnoses to CIDP. I know this because I, too, have Lewis-Sumner Variant CIDP, and my Neuro originally called it MADSAM until I made him look it up online, instead of using his medical textbook copyright 1959.
In my case, the diagnosis of Diabetes came before the diagnosis of L-SV CIDP, although I've most likely had CIDP since 1999, but was misdiagnosed multiple times. Because of the diabetes, my Neuro refuses to allow me to be put on prednisone, even a low (5mg/day) dose.
Thanks very much for this valuable info. I will call my Neuro's attention to it; in fact, I will email him today. Just saw him yesterday. He advises that I stay on the Prednisone, since it has helped more with the weakness in my lower body. He is definitely seeing improvement, which is encouraging. My blood sugar numbers were much better yesterday..and so far, today. I think if I diligently watch the carbs, the numbers will stay within the desired target; 100-120 fasting and 150-170 after eating.
Thanks again, Big Daddy. I will research Lewis-Sumner Variant CIDP. Linda
Big Daddy Qberry said:
Linda,
First, you need to correct your Neuro and provide him the more updated (Post-1975) info on CIDP. The use of the term "MADSAM" shows he is not using the most recent references. "MADSAM" is now known as "Lewis-Sumner Variant (or Syndrome) CIDP", so you were already diagnosed with CIDP before they changed your diagnoses to CIDP. I know this because I, too, have Lewis-Sumner Variant CIDP, and my Neuro originally called it MADSAM until I made him look it up online, instead of using his medical textbook copyright 1959.
In my case, the diagnosis of Diabetes came before the diagnosis of L-SV CIDP, although I've most likely had CIDP since 1999, but was misdiagnosed multiple times. Because of the diabetes, my Neuro refuses to allow me to be put on prednisone, even a low (5mg/day) dose.
Thanks, DocMac. Pretty much what my Neuro indicated. He said that since I did not improve much with the IVIg, Plasmapheresis would be a temporary fix at best. It's very expensive and one treatment that my insurance may not cover. I also discussed the meds that were suggested in this thread. He made it clear that Prednisone was the best treatment they have right now, despite the nasty potential side effects when used long-term (weight gain, fatty liver, joint problems, adrenal gland shut-down, bone problems, etc., etc., etc.). Sometimes I'd rather be an ostrich. This is pretty overwhelming.
DocMac said:
My neuro won't even try plasmapheresis. He says if I want anything "fancy", I have to go somewhere else.
Thanks very much for this valuable info. I will call my Neuro's attention to it; in fact, I will email him today. Just saw him yesterday. He advises that I stay on the Prednisone, since it has helped more with the weakness in my lower body. He is definitely seeing improvement, which is encouraging. My blood sugar numbers were much better yesterday..and so far, today. I think if I diligently watch the carbs, the numbers will stay within the desired target; 100-120 fasting and 150-170 after eating.
Thanks again, Big Daddy. I will research Lewis-Sumner Variant CIDP. Linda
Big Daddy Qberry said:
Linda,
First, you need to correct your Neuro and provide him the more updated (Post-1975) info on CIDP. The use of the term "MADSAM" shows he is not using the most recent references. "MADSAM" is now known as "Lewis-Sumner Variant (or Syndrome) CIDP", so you were already diagnosed with CIDP before they changed your diagnoses to CIDP. I know this because I, too, have Lewis-Sumner Variant CIDP, and my Neuro originally called it MADSAM until I made him look it up online, instead of using his medical textbook copyright 1959.
In my case, the diagnosis of Diabetes came before the diagnosis of L-SV CIDP, although I've most likely had CIDP since 1999, but was misdiagnosed multiple times. Because of the diabetes, my Neuro refuses to allow me to be put on prednisone, even a low (5mg/day) dose.
