Now, at least as of today, Feb 23rd, there is a posting pinned at the top of the CIDP page containing a link which takes you to a survey web site.

it (the survey) worked for me. And, I see 75 people have read it. It’s locked, so no way I can see to know if people are taking the survey or not.

No to all questions 1-8—–I think looking for similarities with this disease is a great idea–but will probably be very difficult. : ( Lori

CIDP SURVEY

Today’s date: October 15, 2009
Gender: female
DOB: 7-23-1953

CURRENT CONDITION
Current age:56
Current level of recovery: Partial
Do you use any aids for walking or other physical activities? AFOs, cane, wheelchair for longer distances
Do you receive maintenance physical therapy? water aerobics (on my own)
Can you usually walk without pain? yes, with neurontin for my feet
Can you work full time, part-time, or are you on disability? on disability
What meds do you take for CIDP? neurontin
What other meds do you take currently? Lipitor, klonipin
What symptoms, if any, do you still have. Please rate each on a 1-10 scale with 10 being the most severe or painful. fatigue 6-7, nerve pain in feet 5 (with neurontin), muscle & joint pain 5 (without pain meds)
Do you have any other chronic conditions? high cholesterol
Please list, with age or date of onset. Specifically have you been diagnosed with:
Cancer? No
Lupus? No
Thyroid disorder? No

HISTORY
Age of onset of CIDP: 48
Where did you live at the onset of the CIDP? northern MN
Prior to CIDP onset, were you:
Ill? had walking pneumonia
Beginning a new medication? no
Had you gotten a vaccination? no
Any new environmental stresses, such as mold or pesticides? no
Were there stressful conditions in your life? If so, please describe (ie, wedding, job loss, etc) no
Original diagnosis—were you diagnosed with GB? CIDP? Or something else? GBS
What sort of doctor did the original diagnosis? neurologist
How was the diagnosis made? Did you have a:
spinal tap: yes
MRI: yes, 4 complete MRIs in all
nerve biopsy: yes
muscle biopsy: yes
bone marrow biopsy: yes

What was your original treatment? Plasma phersis-5 of them
Any other treatments other than your current one? after the PE didn’t work, IVIG & solumedrol were tried, neuro finally resorted to 9 months of cytoxan to arrest my CIDP
How long was your recovery time? 2 years after my chemo began )partial recovery)
Did you receive physical therapy? yes If so, did it help? no
How many times have you relapsed? 3 Please list date or age and severity of relapse on a 1-10 scale. I never did get any better, but did get even worse than I had been, thus, the cytoxan treatments

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? Medicare & private insurance
What did you have at the time of onset? private insurance
Have you had issues getting any treatments covered? I would have if I had been on Medicare at that time, I don’t believe they would have spent the $478,000 that my private insurance paid out to keep me alive
Have you had to refuse any treatment because it was not covered by insurance? no, because I haven’t needed any treatments since 2003 now

FAMILY HISTORY
Anyone in your family have neurological illnesses? no
Autoimmune illness? no, just me (ecsema & allergies as a child)
Cancer? no

ILLNESSES AFTER CIDP DIAGNOSIS AND TREATMENT
What if any major or chronic illnesses have you been diagnosed with subsequent to your CIDP diagnosis? Please note date of onset, level of severity, and if you think this may be a side effect of a drug you take for CIDP. none, so far

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? I have to ration my time & energy, sports are out, I can’t walk long distances, need about 11 hours of sleep a day, driving is much more difficult with partially numb feet, much more dependent on my husband & others

How satisfied are you with your maintenance meds? very, couldn’t imagine my life without neurontin
__________________
GBS: April 2002
CIDP: May 2002

Let me add something to the adminstration’s response. The survey is ONLY for CIDPers. We frequently are asked very specific questions when we are on Capitol Hill and the survey will help us to repsond to those queries. Thank you all for your interest.

Barbara Katzman
Executive Director
GBS/CIDP Foundation International

Hello again,
I got my survey in the mail today and I do want to fill it out and send it in. For some of the questions, I am going to add my own words so that I can answer better.

They are coming, so just watch for the big white envelope in your mailbox.

Hello,
I Have Not Received An Outcome Survey Either And Would Definately Fill One Out.

Is This Something Our Foundation Is Sending Out??

Where did you get the survey? I would like to get one & fill it out also…

Date diagnosed: October 30, 2006
Live in: Warren, MN (way up north)
Cause: flu virus while undergoing radiation for cancer treatment.
I hope you will share your findings. Thanks, Diane

Hi Aimee,
I have CIDP and I stopped progressing three years ago. I am not on anything for the syndrome. I never had pain unless you call extreme teeth gritting numbness pain, so I was never on a pain medication. I’m not on a pain medication (doctor said it wouln’t relieve numbness) because I never needed one, rather then caution about side-effects.