My name is Amber and I have been registered with this site for awhile I have never actually been a part of it. Today I decided that I should be, in a way I need to be. I was diagnosed 20 years ago with CIDP after almost a year of visits to multiple doctors truly having no idea what could be wrong. I was young. At the time I was a medical assistant who worked on a very busy floor, I had 3 young children & a husband. Once I was finally given a correct diagnosis we pinned it back to a flu shot that I had to have for work after all it was protocol. My Dr at the time told me from the very beginning that my symptoms were extremely pronounced & had progressed to a high point of severity. So much that he told me he would do everything he could to help me but not to be surprised if I end up in a wheel chair in 6 months. Now mind you this was 20 years ago. He treated my symptoms fairly aggressively. He started me on IVIG immediately after my spinal tap came back positive for protein. I had IVIG for 10 days solid, he also put me on prednisone which helped tremendously. After that my infusions went to once a week for awhile then 2 & 3 & so on. Sad facts are sad facts I have never been in any type of remission at one point my relapses were happening in a matter of weeks. Sadly this went on for years. Once we had a good handle on it I started receiving my infusions every 6 weeks. I was off work for 2 years while we were getting this under control or trying to. In that time my husband left me because he could t deal with my depression or the situation very well, I was on disability from work so I was receiving next to nothing for income & I had 3 young children still depending on me. At one point I went to sleep with a handful of pills & woke up to handful as well. Until one day reality smacked me in the face I had a concerned 8 year old asking me what she was supposed to make her 2 you get sisters for dinner. Why was my 8 year old asking me this ? I had become so overwhelmed with life I have up. I didn’t try. I let things go. At that moment my little girl saved my life. She had no idea at 8 years old how could she? That next morning I called my Dr I got rid of all of my medication except for my infusions & the steroid as needed. At that moment she helped me take responsibility for giving up on me. My Dr told me that if I needed those meds back just to let him know but there would be no harm in coming off the depression meds or the pain pills. So I did & I never looked back. Fast forward 20 years I still receive IVIG every 6 weeks, have still never been considered in any type of remission by any physician still having relapses every 3 months or so. I was recently told IVIG was not meant for long term use or control of CIDP & they want to try to get me to wait till 8 weeks so I might have other options as far as my treatment. The most recent developments I have also been diagnosed with hashimoto’s thyroiditis as well as chronic hives. We know that CIDP caused the thyroid issue & I’m well aware that chronic hives go hand in hand hashimoto’s thyroiditis. I know there have been studied that show hashimoto’s thyroiditis & chronic hives being a parallel autoimmune disease. But I often wonder does that mean CIDP can also run parallel with those since I had that first? Not only that but does it mean that the CIDP is progressing after 20 years? Questions we are still trying to answer currently. My biggest supporter is now gone the Lord took her home last year. I thought since I do not know anyone else with my condition I would write this very long introduction about myself & see if anyone else has experienced similar issues & what your outcomes have been.
What a warrior you are! I have Chronic Progressive form of cidp. Took Neurologists 4 years of wrong diagnosis due to the fact I was in a (car totaling) accident and he treated my symptoms with that as the ‘reason why’ my feet/legs were numb and I had a lot of pain. I did spinal injections and Radiofrequency Ablations (where it’s supposed to block nerve responses to the brain). Nothing worked, of course, and they treated me like “well, it should have worked, why are you (me) seeking help? It always works!”. Finally, my city got 2 new Neuro’s so I asked my PCP for a referral so I wouldn’t have to travel. New (young) Neuro redid my EMG and diagnosed me properly with cidp. Then, insurance company was like “prove it - you need a spinal tap”, so I had to indure that procedure. The results showed high protein so insurance co said “oh! It’s ‘real’” I now do ivig every 3 weeks but damage is done. I use a cane or walker and have a Transport Wheelchair for air travel or lengthy activities. I currently see a Therapist, to help me deal with this life changing illness. It is a good thing. We currently have Guardianship of my 3 teenage Grands. Due to fatigue, im blessed that they are out of diapers! Ha! There is a CIDP group on fb that has been of great value. There are people out there who truly understand this disease where there are so many variants. Im only 6 years into this - if you count the 4 years of wrong dx. Sending you hugs.
the first is for actual discussion of the condition basically and the second is for emotional support
Well thank you but I would have to say you are one heck of a warrior yourself! That situation sounds so similar to mine it amazes me. All in all I haven’t let this stop me from doing anything at least not now. I did in he beginning but I was young & scared. I used to see a therapist but I did stop when I began to feel like they weren’t believing what I was saying. It’s very difficult to confide in someone when they really think you are wrong or even making it up. Thank you for sharing you story with me. Good Luck with those teenagers! lol Hugs back !
Thank you I think I will look them up
We’re glad that you came out of the shadows and joined us, Amber! This is an interesting and supportive group, and I think you’ll fit in really well.
Facebook is great, but the advantage of this group is that we have longer conversations, and you can also use the search function to do research. Reaching out for support in either way – through this site and/or through facebook – is a really positive experience for most people. We hope that it will be for you as well.
Seenie from Moderator Support
Welcome to our group, Warrior Amber!!! I suffer from GBS complicated by a broken neck due to 3 decades of extensive prednisone use (which besides my neck has given me steroid-induced cataracts and a crumbling hip requiring a total hip replacement. The broken neck mangled the top of my spinal cord, thus making me a quadriplegic. Despite all that tomfoolery, my husband of 16 years has been by my side all thru this and is the best caregiver I have (what a trooper he is!). As has already been said, here we can let all of our fears and vibes hang out as one will always find at least one (but usually many) who can relate to what we are going thru. Consider me your sister, Amber!!!
Thank you for the kind words. It is wonderful that you have someone who is willing to be there & be supportive of you on good days & bad days. Even for after everything you have been through your spirit is so bright!
On Friday, July 28, 2017, Andrew Pyper ■■■■■■■■■■■■■■■■■■ wrote:
Amber, thank you so much for your message. I am in my 5th month of CIDP. I have had two relapses. I could not walk because I lost the use of my legs. I had multiple plasmapheresis treatments (31 in total so far). After each setback I have five treatments over 10 days. Since my last relapse (April 17’) I have continued on a regiment of two plasmapheresis treatments a week. I am now beginning a once -a-week regiment to see if I can tolerate life. I have not been able to go two weeks without a treatment, because twice I have relapsed because they were spread out to far. I also take Cellcept (tried imuran but could not tolerate it) which we hope will eventually take over for the plasma treatments.
You also talked about other side effects and issues. I have some minor side effects from the Cellcept drug I am taking and currently I am dealing with searing pain from a frozen shoulder. When I lost use of my legs, my arms were my source of strength and my shoulders took the brunt of my weight. After a slight injury from over use and then resting for a month, my should started to lock up and cause searing pain. So I start PT next week to force my range of motion back to normal. Very painful I am told.
Reading Your message my first thought was,“I wish I was there to give you a hug and encourage you.” Sorry to hear about your husband. My wife is having a hard time dealing with this also, it’s a heavy load. We are Christians and always said divorce is not an option and we are living up to the covenant we agreed upon 30 years a ago. It is nice to know when we said, “in sickness and in health” we would stay committed, we meant it.
Your message helped answer some lingering questions. Thank you for you honesty and transparency. I will begin long term disability in September, I will be terminated if I am out of work for a year. I will lose benefits after two years. I was considering applying for early retirement which would give me medical benefits if granted. After reading your post it seems like the best option.
Thank you for sharing and helping me deal with the reality of this disease. I am one who “gets it” and I am on your side pulling and praying for you.