My spouse and I have CIDP

Hello Sue,
First off, no CIDP is not contagious and it’s extremely unusual for both of you to have it as it’s considered a rare disease. It’s so unusual I actually question the diagnosis for one of you – if your doctors in Arkansas are not familiar with CIDP they may be misdiagnosing one of you. Do you know how they came up with their diagnosis? What tests did they run? Assuming you are confident in the diagnosis I would still consider getting to a hospital or university that has more experience with CIDP. IVIg is only one of several potential treatments but with your husband’s additional complications it would be best to discuss each of them in detail with someone familiar with the disease and medication side effects. Typically the four routes to try are steriods, IVIg, immune suppressants and plasma pheresis. They all have their good points and bad points and in the long run it only matters what works for you.

As for the disability, it did take me more than a year to be approved. I was turned down the first time and started the appeal process alone with nothing happening for six months. We finally contracted a law firm to help out with bugging people for paperwork and less than two months later I was approved, one month after that I had my first check. I think what helped in addition to the fact that I appeared more serious by having a law firm is that I had a firm diagnosis, as opposed to the first time I applied, and I was much more qualifying in describing my abilities. Take your worst day and describe what you can and can’t do, how long it takes you to do the task, whether you need help, how long it takes you to recover, how difficult it is for you etc. The law firm basically said you have to convince a judge you aren’t well enough to sit in front of a security camera TV with your hand on a phone to call someone in case of emergency. He said that’s kind of the level they look for – most people can sit around watching TV and can and will call people to chat – therefore if you can do that in your private life you should be able to do that level at work. So you need to think on that level – you aren’t convincing the judge there isn’t a job in your area you could do, you are convincing the judge that you can’t do even a minimal job if it were available. If you do a search on these forums for disability you will see lots of people’s experiences and suggestions.

I am so sorry you and your husband are both having troubles, it hardly seems fair that you are both down at the same time. I know it’s a struggle to get to good medical care and to keep fighting for disability but it’s worth it in the long run. As my husband says “short term pain for long term gain” which irritates me most of the time but he is right.

Take care of yourself and give us a little more detail about how you got diagnosed, your symptoms etc.

Julie

Hi Sue,
I second Julie on the duo dx. But i have learned, nothing is impossible! If it is true, you guys should play the lotto, because statistically, you guys are off the charts. There is a ton to write, if I do not get it all now, will check back later. Regarding your husband, diabetics as I am sure you know DO experience neuropathic painfrom the diabetes itself. Additionally, many diabetics do go on to get cidp. Was he dx with a spinal, nerve biopsy, ncv/emg? he would need at least one probably two of these diagnostic tools to make a clear dx, in addition he should present clinically. As Julie mentioned, steroids, ivig, pp, other imunosuppressants are treatments. About the steroids, probably not a good idea for your husband since he is diabetic. As well, some w/cidp actually have an increase of weakness w/steroids, not to mention the side affects. Ivig also can be harmful to someone w/diabetis if it is a brand that contains sugars. Gammaguard liquid and gammunex are 2 brands that I am sure do not contain sugars, there may be others but I have not investigated that. how many times did you both get ivig? What was the dosing? You may not have received enough or frequently enough. As well, some people need to have it a few times before they notice a difference.

About yourself, what are your symptoms, how long have they progressed. How was your dx determined? If you don’t mind my asking, what is yours’ amd your husbands weight, if you tell me I can figure out how much ivig you would need. Here is the formula if you would like to figure it out yourself. Take your weight, divide it by 2.2, that is your weight in kilograms. now you need to multiply that by 2 and that would be the amount of grams of ivig you should be infused with. Multiplying by 2 is a loading dose, 2g/kg and multiplying by one is a maintanence dose. Asside from the dosing, it takes a while to figure out how often you need it. My 11 y/o gets it every 30 days, some get it every week, or bi-weekly. Figuring out a regular schedule to suit your needs is the hardest part after a proper diagnosis. If you have had an elevated protein level in a spinal tap fluid sample and a ncv/emg indicative of cidp as well as presenting clinically, it will just be a process of figuriong out an ivig schedule for you. If you are able to travel, you could consider Mayo, if not and the dx is firm, just try to talk to your doc with protocols in hand and have an idea of what you would like to happen..This may sound strange, but if you have no other options for a doc, you have to work with what you have. Most docs are not experienced in this area, as well, most seem to welcome help and interaction from a patient. Is Illinois a doable drive or Michigan? There was a doc at a symposium that was in Illinois that is in Michigan. He is someone I would send my son to if we did not have the great doc we have. he writes for the cidp news letter and is on the medical advisory board. You could phone the foundation or e-mail them and they could hook you up with someone experienced in your state.
Good luck to you and your husband, write often, it is the best way to learn. People on this site are wonderfully compassionate. PLEASE REFER TO A THREAD STARTED BY WITH HOPE REGARDING NOTES FROM THE SYMPOSIUM. They are wonderful tools that you can print out and bring to your doc. This person has some sort of experience with children with cancer and immune issues and understood what was said at the symposium better than any of us. I highly encourage you to use the search engine on the top bar to search the info. If you cannot find it, go to the Members List under With Hope, click on it and you can search all of that person’s posts from there.
Actually, I will try to bring it up for you.
Dawn Kevies mom

Sue, I just pulled up With Hope’s notes, there are 3 threads. Good luck!
Dawn kevies mom