Hi Linda,
I am also considering contacting NW for an eval on the SCT. I was wondering, once it was over. How long before you could return to working full time or at least part time? My big problem is that I can’t lose my job and I can’t be gone for months and months. How long was the process in the hospital and then after to recover? I am sick of living my live around CIDP. I want to start living a normal life again. Chemo scares me too but so does sitting in an infusion center every 20 days for 6 hours for the rest of my live, getting a medical port installed, and getting sicker if the IVIG stops keeping me where I am now. I want to get the SCT while my body is healthy and I don’t have long lasting damage. I don’t want to wait until I am at the point that I am getting damage to my nerves and I have no other choice.

Do you have to be disabled to get the SCT? I have CIDP and am not disabled at this point. I get IVIG every 3 weeks and am able to keep this disease at bay. But I can’t stop the IVIG or I decline. I was contacted by NW a few weeks ago because I had called and left a message. The woman said that you do not have to be in bad condition, just need to show that the IVIG is not stopping your progression. I also tried pred and can’t stay on the pred because of side effects. The woman at NW said I should submit my records to be reviewed. My doctor is against it. He said that it is such a grooling procedure that he would stay on IVIG for as long as I can. But my feeling is that I don’t have much damage right now and if I could stop the progression of my disease now while I am healthy and not in that much pain then I could go back to a normal life not surrounding my next IVIG treatment. I hate living this way. I have much anxiety and fear about my future and the progression of my disease. I know the SCT is still in trial and it is grooling but if it could cure or at least put me into remission for long term I would be greatful to go through it. But I don’t know if it is too much a risk for someone like me. I have mixed feelings. I guess it could not hurt to submit my recoreds just to see if I even get an evaluation. Then go from there. Has anyone gone through the SCT that was not really sick and at the last resort? IVIG is good for now but getting it every 21 days I know I will need a port at some point and i thing $16,000 every three weeks actually costs my insurance company more to maintain me then it would for then to cover the SCT once and for all and get me off their system as needing the IVIG. Just so sick of CIDP and I have only had it for a year.

I got diagnosed with CIDP early on in the stage of my disease. But I don’t have a lot of the typical CIDP symptoms. No muscle atrophy, no loss of reflexes, no loss of sensations. I only had a numb foot to start with and some tingling in my hands. My neuro did a EMG and NCS right away and they showed moderate demilination. Then I had all the regular tests like MRI, spinal tap, blood tests to rule out other diseases. My proteins in the spinal tap were elevated. So she gave me the diagnosis of CIDP and started IVIG infusions within 5 months of my foot numbness. I have transferred to a specialist at the U of M because I feel better having someone who specializes in CIDP instead of a general neuro (but that is just me). Anyway, I have continued with IVIG now every 21 to 28 days and don’t have many symptoms. But if I spread out my IVIG to more than 28 days my tingling and burning on my hands returns and some sluggish feeling in my legs. But I am told that because I started IVIG so soon that I have a good prognosis for keeping my disease at bay. I can only hope and be on top of things when I feel new symptoms. So see if they will start IVIG and if you respond you can get the diagnosis. My neuro said response to the IVIG pretty much cinched my diagnosis. I refused the nerve biopsy as I heard it can take long to heal and cause permanent numbness where I did not already have numbness.

Good luck.

I know Graves Disease (high thyroid) is actually an autoimmune disease. I was diagnosed with Graves Disease at age 9 and had treatment for about two years to put my Graves into remission. Now I am 46 and I am still in remission but I am told that now that I have CIDP which is autoimmune my Graves could also reactivate and start to cause me problems. So far it has not and my thyroid is still normal. But I am on the look out for any symptoms that might show that I am starting to have hyperthyroidism again. Treatment would be different as an adult. They would probably remove the thyroid and start me on supplements. When I was 9 they wanted to preserve the thyroid since I was so young. I am not sure if all thyroid disease is autoimmune but I know the form of hyperthyroidism called Graves Disease is autoimmune related.

If you don’t want the biopsy maybe seek another opinion from a different neurologist. Some neurologists will do a skin biopsy. A skin punch biopsy is the easiest and least problematic. A skin biopsy can look for peripheral sensory nerve damage and death. It is a quite accurate measure. I refused the nerve biopsy as I heard that in some cases it does not heal properly and can cause more pain that you did not have before the biopsy. I guess I would look into it before getting something I did not want.

Not true on the High Protein diet and IVIG causing problems. You scared me because I just started the Atkins diet which is high protein low carbs about 3 weeks ago. I get IVIG every 3-4 weeks. I am not a big eater but since CIDP I just can’t seem to lose weight and my weight has been creeping up slowly because I don’t get as much exercise as before CIDP. I tried just decreasing what I ate and making healthy choices. It did not work. I did not lose a thing and I was hungry ALL the time. So someone else lost weight on the Atkins diet so I decided to try. I have lost weight and I am not hungry all the time. I do crave some carbs but it is getting better as I go into my 3rd week. I just freaked out and called my doctor office. They said in all the years they have seen patients with CIDP they have never cautioned about being on any special diet. She doesn’t think the high protein is THAT taxing you your kidneys that you have to stop the diet. Only if you are a person with kidney issues already and have had issue with the IVIG and kidney problems. She said that if I am losing weight and it is making me feel good then by all means stay on the diet. Since cutting carbs out I not only lost weight but my stomach is not all bloated and gassy. I think carbs stop up your system and cause bloating. Now I won’t say off carbs for ever. After two more weeks then I start to gradually add some carbs back into my diet. But stay with whole grain carbs and healthy carbs from veggies. They said add them back slowly to see where your tolerance level is to maintain weight. Of course I will have the occasional pig out of pizza or cake or whatever. But I plan on sticking to the lower carb higher protein diet for a long time. Just plan on variating it a bit so that it becomes easier for maintenance long term. So I disagree about the whole kidney issue with protein. Do discuss any diet changes with your doctor of course.

What are your symptoms with your “atypical” CIDP?

I contacted the study and received an email back from someone there at the study. I asked if they would ever consider someone who has CIDP but is not at the end for choices with treatment. I am doing ok with my IVIg infusions and don’t have much in lasting damage to my nerves…yet. I wondered why they could not also study the effect on SCT on people like me who haven’t had the disease that long and don’t have long-lasting complications yet. Why not cure us before the disease takes hold of our bodies and causes irreversable damage. Wouldn’t it be cheaper for the insurance companies to pay the large fee once up front to cure us instead of paying $10,000 plus each month just to maintain us where we are at? But she said at this point they are only doing the SCT on people who have failed in all types of treatment and are pretty much at the end of options for treatment. Bummer. I would also love to stop this disease right now before I progress any further and start to live my life without IVIg treatment every 21 days. I hope they approve this as a treatment in the future for all CIDP sufferers.