My Experience

February 17, 2011 at 4:30 pm

While I’ve not been diagnosed with CIDP, I’ve been diagnosed with other things which are far harder to “document” in a disability court…Fibromyalgia, Chronic Fatigue, Myofascial Pain Syndrome, 8 herniated discs, Peripheral Neuropathy, Meniere’s Disease, Inflammatory Osteoarthritis and possibly Rheumatoid Arthritis. (whew…) I started coming here a couple years ago, when I thought that I, too, had CIDP. I continue to post sometimes, on topics that I think I have a justifiable basis in.

All that said, my advice would be to find an attorney that specializes in SSDI. Most, in my experience, work for a share of your back payments…in Utah it’s usually 25%. They will be able to tell you if you have a case; for one thing, since they’re working for a portion of your proceeds, they won’t TAKE the case unless they feel they can succeed. You know?

I had to take a Short-Term Disability from my job in July of last year; that lasted for 3 months, and then I applied for, and was approved for, a Long-Term Disability, also through my employer. They had a private policy for all employees that pays 60% of your earnings for the year before you left on disability; it can be paid for up to three years. The fourth year it drops to 20%.

I’ve already been told by the LTD carrier that I HAVE to file for SSDI. It’s purely economic for them; whatever Social Security will pay reduces the amount THEY have to pay me. They’re required to make sure I earn the 60% figure; if SSDI pays, say, $1500 a month, then that’s $1500 a month LESS that THEY have to pay.

Talk to an attorney; if you think you’re going to go that route, the best thing you can do RIGHT AWAY is to start gathering your records…ALL OF THEM! I have copies of everything for the past ten years…all the films, lab reports, radiology reports, everything. If you wait and let the attorneys gather it, it will make the process much harder, and incredibly slower.

As always, just my opinion…


my experience

October 3, 2009 at 5:59 am

as i have been reading these varied posts, i realized that i haven’t shared my experience– why i think i got cidp.

i was under a tremendous amount of stress in the months (maybe even the last few years) preceding the onset of my symptoms– and then in early october of 07, i came down with a case of shingles. by dec 07, i began to feel that my toes were sightly numb. it just got worse from then.

i’ve often wondered if allowing myself to be so stressed for so long, set my body up for whatever causes the body to shift to autoimmunity. interestingly, the last event along a line of stressful events was the death of a dog that i felt a particularly deep love and connection to. her name was Mia. she was a 14 year old rottweiler and besides her kidneys giving out, she was also diagnosed with stomach cancer. all i could do for her was try to keep her comfortable until i no longer could. the next weeks wiped me out emotionally as i gave her subcutaneous fluids and she wore a fentynal patch. after a day and night of her clearly suffering, i put her down… that was on dec 6th 07. my symptoms began 4 days later, on dec. 10th… i’ve often thought that this last huge stressor was the final event i could manage– i just fell apart, in more ways than one, after that…

anyway. sniff sniff– i feel better now of course. i feel i grew up during this trying illness. i feel i’m a better person now. if only i could take the lessons i’ve learned, but [U]without[/U] this illness as a constant reminder– i’d be the happiest woman on earth 😉

keep your stories coming !! i plan to work on categorizing them and may need future clarification. clearly, there will be many in the “i don’t really know” category. but even those of you who do not really know, the information you provide is invaluable. wouldn’t it be remarkable if a pattern emerged from the “i don’t know” stories.

thanks again and know that i will post what i come up with eventually and will welcome your insight and corrections.

with warmth and gratitude,

My Experience

January 5, 2009 at 12:02 pm


I was diagnosed with polycystic kidney disease in 1996 and went on dialysis in 1998. Since I was an End Stage Renal Disease patient, I qualified for Medicare after being on dialysis for 2 months. Since I was working, it became my secondary. I had a kidney transplant in May of 2001 (and it’s still tickin’!). In August of 2001, I was diagnosed with GBS and when I got out of the hospital, I contacted SS to begin the application process for disability. (During my hospital stay for GBS, I was terminated from my job as I had exhausted my FMLA.) I was approved on the first try and have been on Medicare since.

From reading your post, it seems that your employment is what is inhibiting you from qualifing for disabilty and Medicare. I received LTD from my former employer but when I qualified for disability, that stopped. Attempting to live on disability is tough. It’s about 1/2 of what I was receiving on LTD but Medicare is [U][B]WAY[/B][/U] cheaper than COBRA!

I know all too well how dealing with the government can be but once you’re in the system everything runs smoother. Just keep good records and COPIES of EVERYTHING you send to them.

My experience

June 14, 2007 at 9:25 pm

I was recently diagnosed wirh CIDP, therefore i cannot call myself and expert on the issue, but to the little i know, it sounds that you are taking too much medicinel I was on prenisone for 4 months and i had no effect on me, i was feeling just as i was feeling in the beginning of the treatement, but with the horrible side effects: moon face, mood swings, weight gain, acne…. My neuro decided to stop the prednisone and to continue with IVIG and immuran. I still take some prednisone because it is dangerous to interrupt it, it has to be gradual. Now i am waiting to see the ivig results (it is only been a few days since i took it), but the doctor says the prednisone is not necessary anymore. I agree with the rest,if you’re responding to ivig well, why should you star a treatment, like prednisone, that has horrible side effects? Discuss it with your neuro.

I wish you the best of luck and i am happy IVIG is working for you. Greetings from Mexico.