Data-mining

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

[FONT=”Comic Sans MS”]Today’s date: October 15,2009
DOB: 01/02/1955

[B][I]CURRENT CONDITION[/I][/B]

Current age: 54

Current level of recovery: Partial

Do you use any aids for walking or other physical activities? No

Do you receive maintenance physical therapy? No

Can you usually walk without pain? Yes

Can you work full time, part-time, or are you on disability? Not On Disability

What meds do you take for CIDP? IVIG-Once a month,Neurontin 300 mg. 3X day,Borage Oil,Alpha Lipoic

What other meds do you take currently? Mobic,Vitamin D w/Vitamin K

What symptoms, if any, do you still have. Please rate each on a 1-10 scale with 10 being the most severe or painful: Numbness in feet,Tingeling in legs up to high calf area; Rate 5

Do you have any other chronic conditions? Please list, with age or date of onset. Specifically have you been diagnosed with: Osteo Arthritis, Age 25,
Cancer? No
Lupus? No
Thyroid disorder? No

[B][I]HISTORY[/I][/B]

Age of onset of CIDP: 52 (onset not diagnosed)

Where did you live at the onset of the CIDP: Henderson, Nevada

Prior to CIDP onset, were you ill: No

Beginning a new medication: No

Had you gotten a vaccination: Flu Shot since 2005

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): Yes, 2006 my son was in college in Texas, and was in an automobile accident, we nearly los him, he was in a coma for five days then moved to rehibilitation for four months, I left Henderson, Nevada for four months to take care of my son. He is doing great now but the stress at that time indescribable.

Original diagnosis—were you diagnosed with GB? CIDP? Or something else: CIDP

What sort of doctor did the original diagnosis: Neurologist

How was the diagnosis made? Did you have a spinal tap: yes

MRI: Yes

nerve biopsy: No

muscle biopsy: No

bone marrow biopsy: No

What was your original treatment: Plasmapheresis, IVIG

Any other treatments other than your current one: Plasmapheresis

Do you currently have private insurance or Medicare/Medicaid: Private Insurance

What did you have at the time of onset: Private Insurance

Have you had issues getting any treatments covered: No

Have you had to refuse any treatment because it was not covered by insurance: N/A

[U][B]FAMILY HISTORY[/B][/U]

Anyone in your family have neurological illnesses: No

Autoimmune illness: Yes

Cancer: No

[U][B]ILLNESSES AFTER CIDP DIAGNOSIS AND TREATMENT[/B][/U]

What if any major or chronic illnesses have you been diagnosed with subsequent to your CIDP diagnosis: Osteo Arthritis

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: That would be nice to know

[U][B]ESSAY QUESTIONS [/B][/U](optional)

How does CIDP impact your daily life: CIDP slows me down alot, makes me tired, sometimes I lose my balance, my feet burn and hurt at the end of the day.

How satisfied are you with your maintenance meds: Not on maintenance yet
__________________

CIDP: 2009
SIZE=”4″][/SIZE][/FONT]

CIDP SURVEY

Today’s date10-15-09
Gender Male
DOB 4-18-58

CURRENT CONDITION
Current age 51
Current level of recovery: full? Partial? residuals at a plateau
Do you use any aids for walking or other physical activities? cane w’c
Do you receive maintenance physical therapy? do yoga , stretching
Can you usually walk without pain? no
Can you work full time, part-time, or are you on disability? disability
What meds do you take for CIDP? neurontin, morphine, percoset
What other meds do you take currently?
What symptoms, if any, do you still have. Please rate each on a 1-10 scale with 10 being the most severe or painful.
Do you have any other chronic conditions? Please list, with age or date of onset. Specifically have you been diagnosed with:
Cancer?
Lupus?
Thyroid disorder?

HISTORY
Age of onset of CIDP 30
Where did you live at the onset of the CIDP? NC
Prior to CIDP onset, were you:
Ill?no
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) stressful job, but it did not cause CIDP
Original diagnosis—were you diagnosed with GB? CIDP? Or something else?PN
What sort of doctor did the original diagnosis? neuro
How was the diagnosis made? Did you have a:
spinal tap y
MRI n
nerve biopsy y
muscle biopsy y
bone marrow bi opsy n

What was your original treatment? oral pred. imuran, neurontin
Any other treatments other than your current one? yes
How long was your recovery time? constant slow decline
Did you receive physical therapy? If so, did it help? no
How many times have you relapsed? Please list date or age and severity of relapse on a 1-10 scale.
progressive, not relapse/remitting
INSURANCE
Do you currently have private insurance or Medicare/Medicaid? Medicare
What did you have at the time of onset? yes
Have you had issues getting any treatments covered? no
Have you had to refuse any treatment because it was not covered by insurance? n o

FAMILY HISTORY
Anyone in your family have neurological illnesses? no
Autoimmune illness? yes
Cancer?yes

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.

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? CIDP is a constant pain companion. Even though I take strong pain medication, I need good solid rest and must live in moderation. If I over-do, I suffer. I must pay attention to what I do and how much I do of it. CIDP dominates my life.

How satisfied are you with your maintenance meds? I still live
__________________
GBS: 1994
CIDP: 1995

CIDP SURVEY

Today’s date: 2009-10-17
Gender: Male
DOB: 1967-06-27

CURRENT CONDITION
Current age: 42
Current level of recovery:slow relapse
Do you use any aids for walking or other physical activities? No
Do you receive maintenance physical therapy? Physio once a week, and daily spinal exercices.
Can you usually walk without pain? Partial weakness, usually no pain.
Can you work full time, part-time, or are you on disability? I´m working, with two daily bed rests.
What meds do you take for CIDP? Aziatioprine.
What other meds do you take currently? Indometacin for pains. Omega 3 and Soy lecithin.
What symptoms, if any, do you still have. Fatigue 8-10. Vertigo 5. Legs weakness 5. Pains 5.
Do you have any other chronic conditions? Spinal spondylitis (autoimmune) age 39.

HISTORY
Age of onset of CIDP. Age 40.
Where did you live at the onset of the CIDP?
Prior to CIDP onset, were you:
Ill? NO
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
==>I was eating o much no well cocked chicken, asociated with Campylobacter Jejuni GBS antigen.
Original diagnosis—were you diagnosed with GB? CIDP? Or something else? Autoimmune polineuritis.
What sort of doctor did the original diagnosis? Multiple sclerosis neurologist.
How was the diagnosis made? Did you have a: EMG/NVC + clinical + serum tests
(anti-GD1a 1/15.000 + anti-MAG 1/10.000)
spinal tap; NO
MRI; YES Lumbar plexus and sacral sclerosis.
nerve biopsy; NO
muscle biopsy; NO
bone marrow biopsy; NO

What was your original treatment? Sulfasalazina, used for the sponsylitis.
Any other treatments other than your current one?
How long was your recovery time? 4 months
Did you receive physical therapy? If so, did it help? It is helping with my legs and back weekness/pain.
How many times have you relapsed? Not a clear remiting/relapse course, like always slowly getting worst.

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? National Health insurance, but pay for the neuro.
What did you have at the time of onset?
Have you had issues getting any treatments covered? Insurance do not cover the Cellcep or Imuran (not generic).
Have you had to refuse any treatment because it was not covered by insurance? Yes, the ones I said.

FAMILY HISTORY
Anyone in your family have neurological illnesses? One grandfather died because of polineuritis.
Autoimmune illness? Autoimmnue diseases are from 20 years known. My grandfather was no known what he really had.
Cancer? My father.

ILLNESSES AFTER CIDP DIAGNOSIS AND TREATMENT
What if any major or chronic illnesses have you been diagnosed with subsequent to your CIDP diagnosis? None.

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? Fatigue keeps me from doing things I used to do before.
I´m lucky I do office work, not too much physical work.

How satisfied are you with your maintenance meds? I´m not sure if they do anything good or not.

CIDP SURVEY

Today’s date 10/19/09
Gender Male
DOB

CURRENT CONDITION
Current age 49
Current level of recovery: Partial
Do you use any aids for walking or other physical activities? Cane, very occasionally.
Do you receive maintenance physical therapy? No
Can you usually walk without pain? Yes
Can you work full time, part-time, or are you on disability? Full time
What meds do you take for CIDP? IVig and prednisone
What other meds do you take currently? None
What symptoms, if any, do you still have. Numbness 6, Imbalance 5, Fatigue 6,muscle cramping 7-9.
Do you have any other chronic conditions? No 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? 41?
Where did you live at the onset of the CIDP? New Jersey
Prior to CIDP onset, were you:
Ill? No
Beginning a new medication? No
Had you gotten a vaccination? No
Any new environmental stresses, such as mold or pesticides? No, but was working in NYC after 9/11.
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? CIDP
What sort of doctor did the original diagnosis? Neurologist
How was the diagnosis made? Did you have a:
spinal tap Yes
MRI Yes
nerve biopsy No
muscle biopsy No
bone marrow biopsy No

What was your original treatment? IViG
Any other treatments other than your current one? No
How long was your recovery time? No recovery, just not getting too much worse
Did you receive physical therapy? If so, did it help? Yes and yes for accomodation techniques
How many times have you relapsed? Mine has not been a remission and relapse, but I have had more serious exacerbation of symptoms about once a year. The most recent was probably due to food poisining. Please list date or age and severity of relapse on a 1-10 scale.

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? Private
What did you have at the time of onset? Private
Have you had issues getting any treatments covered? Initially yes.
Have you had to refuse any treatment because it was not covered by insurance? No

FAMILY HISTORY
Anyone in your family have neurological illnesses? No
Autoimmune illness? Yes
Cancer? Yes

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

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? Frustration and fatigue are the most prevalent. Accepting limitations on activities and seeing the impact on family members.

How satisfied are you with your maintenance meds? Knowing the cost and that its not a cure bothers me, but the IViG regimen (every 4-6 weeks) works very well for me.

I know that all the questions take some time. Maybe there might be a correlation somewhere. I am glad to help, and I hope you can get 25-30 responses so you may have some statistical validity.

Good luck

10/20/09
Female
Age: 71

Diganosed CIDP 10/08
Weaning off prednisone. Doc says improvement dramatic.
I use a walker outside only. I have tried and can go on my own, but I’m too scared. I fell down five time before my diagnosis and sustained injuries that have healed. Inside I walk without any support.
Do my own exercise, treadmill, exercise bike and walking outside with walker.
I retired a year ago because of CIDP. I couldn’t drive to work and my retirement was in place to sustain me.
I am now taking 10 mg of pred on alternate days. For Diabetes I take insulin and Glipizide.
I have numbness in feet and shin but seems to be improving.
Overall health is excellent otherwise.
Age 70 at onset.
Lived here in Las Vegas
Just prior to CIDP I was diagnosed with Diabetes.
A year prior to these two diseases I had Peridontitis, because I had a new dentist who was improperly cleaning my teeth with no scaling and only using a cavitron. It only took a year! Prior to this my mouth was in pristine condition as I always had my teeth cleaned every 4 mos. for the Past Thirty Years!
I found a new hygienst who deep scaled and root planed and placed a powered antibiotic in my gums. She brought my mouth completely back to health. Next came Diabetes and CIDP. Today my mouth is pink and healthy so maybe I have a chance to rally back again.
Family History of Diabetes
I was diagnosed by a very sharp neuro with EMG NCV as well as a nerve biopsy and a muscle biopsy. Both biopsies were sent to Salt Lake City for a second opinion.
In the current issue of I.G. Living I read where the current theory about GBS is that a microbe that resembles a nerve infects the body and the immune system then attacks the nerves. It’s only a theory. They didn’t say anything about CIDP.
When gums become infected as in my case a whole cascade of health problems can ensue not only Diabetes, but stroke, heart disease, ostepenia, lung disorders and a whole host of other diseases. That’s why I always took care with my gums.
It’s my understanding that you can’t get diabetes if you don’t have the gene and that CIDP is not hereditary. Maybe they don’t know for sure and I wonder if a microbe got me. When I first became weak, fatigued and started falling down I felt like something indescribable was invading my body and causing strange sensations.
I forgot to mention that I have needed nothing for pain since last Dec./2008.
Prior to that I was taking Lyrica and then Neurontin.

CIDP SURVEY

Today’s date 10-21-09
Gender Male
DOB 10-8-60

CURRENT CONDITION
Current age 49
Current level of recovery: full? Partial? Partial
Do you use any aids for walking or other physical activities? At times a cane
Do you receive maintenance physical therapy? No
Can you usually walk without pain? No
Can you work full time, part-time, or are you on disability? Part Time
What meds do you take for CIDP? Ivig Nuerontin
What other meds do you take currently? Daily aspirin
What symptoms, if any, do you still have. Please rate each on a 1-10 scale with 10 being the most severe or painful. Feet and legs numbness and weak 6 Sharp shooting pains at times 4 mucsle tightness 4
Do you have any other chronic conditions? 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 40
Where did you live at the onset of the CIDP? Southern Wisconsin
Prior to CIDP onset, were you:
Ill? no
Beginning a new medication? no
Had you gotten a vaccination? no
Any new environmental stresses, such as mold or pesticides? being a dairy farmer I was exposed to mold and pesticides and herbicides through out the years of dairying
Were there stressful conditions in your life? If so, please describe (ie, wedding, job loss, etc) yes having a newborn child born premature and then less than 2 yrs a second child born and almost losing my wife to complications from pregnancy
Original diagnosis—were you diagnosed with GB? CIDP? Or something else? CIDP
What sort of doctor did the original diagnosis? Neurologist
How was the diagnosis made? Did you have a:
spinal tap yes
MRI yes
nerve biopsy yes
muscle biopsy yes
bone marrow biopsy no

What was your original treatment? Ivig
Any other treatments other than your current one? solumedrol
How long was your recovery time? 2 years of recovery time and 2 years of feeling almost normal and then a severe relapse and a year to recover to 75%
Did you receive physical therapy? If so, did it help? yes
How many times have you relapsed? Please list date or age and severity of relapse on a 1-10 scale. relapse July 06 age 46 an 8 Aug 09 age 49 a 7

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? private ins.
What did you have at the time of onset? private ins.
Have you had issues getting any treatments covered? no
Have you had to refuse any treatment because it was not covered by insurance? no

FAMILY HISTORY
Anyone in your family have neurological illnesses? no
Autoimmune illness? no
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

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? very careful to not over do things physicaly I am no longer able to dairy farm sold cows 5 yrs ago

How satisfied are you with your maintenance meds? Ivig every 4 weeks has helped to keep things under control and mobile
__________________

Forgot to mention that even before actual CIDP diagnosis I was taking about 500 mg. of alpha lipoic acid. A short time later I switched to R-lipoic acid when I found out it was a better form of alpha lipoic acid.
Along with the lipoic I have been taking acetyl L-carnitine a nutrient which is supposed to help with nerve pain.
Last week I logged on to clinicaltrials.org (government run clinical trials) and found they were giving some participants 1200 mg, I believe, of alpha lipoic acid. The others were receiving a placebo. At any rate I upped my dosage of R-lipoic acid from 450 to 1200mg.
The alternative medicine nutriton guide book I read said 4000mg of acetyl L-carnitine would help with pain, but I have only been taking l000mg. This acetyl L-carnitine is not to be confused with L-carnitine.
CIDP presents with an individual course for many of us and It’s too early for me to determine whether I am on a progressive course and could get worse or if Iam relapse/remitting or something else. Thankfully, though, all the pain went away after my first 2 months on 20mg of prednisone daily. Was it the nutrients or the course of my CIDP or is a severe relapse ahead or am I going into remission and then coming back again or maybe never again. I have to learn to handle the stress of uncertainty as well as I can.

CIDP SURVEY

Today’s date 10/21/2009
Gender M
DOB 1962

CURRENT CONDITION
Current age 47
Current level of recovery: full? Partial? Partial recovery from severe exacerbation, but somewhat progressive case
Do you use any aids for walking or other physical activities? Cane as needed. Hand controls for driving, prism glasses for driving for double vision
Do you receive maintenance physical therapy? I go to a gym to stretch, ride exercise bike
Can you usually walk without pain? No
Can you work full time, part-time, or are you on disability? Disability since 2005
What meds do you take for CIDP? IVIG every two weeks
What other meds do you take currently? None
What symptoms, if any, do you still have. Please rate each on a 1-10 scale with 10 being the most severe or painful. Leg weakness = 6 left/8 right. Hand and wrist weakness 9 left/6 right. Double vision = 7 Arm weakness 5 left/0 right. General fatigue = 2 – 8 depending on day. Numbness/sensory = 4. Pain = 4-6 in feet. Joint/muscle pain = 4-6 depending on day
Do you have any other chronic conditions? No
Thyroid disorder?

HISTORY
Age of onset of CIDP 32? very subtle, insidious onset.
Where did you live at the onset of the CIDP? Orange County, CA
Prior to CIDP onset, were you:
Ill? Do not believe so. Only thing I can pick out is onset of severe unexplained fatigue prior to appearance of first symptom, a burning feeling in the soles of feet.
Beginning a new medication? No
Had you gotten a vaccination? Do not believe so.
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) None that I recall
Original diagnosis—were you diagnosed with GB? CIDP? Or something else? CIDP – subsequently adjusted to Lewis-Sumner variant, also known as MADSAN
What sort of doctor did the original diagnosis? Neuromuscular specialist
How was the diagnosis made? NCV/EMG Did you have a:
spinal tap Yes, two
MRI Yes, brain
nerve biopsy No
muscle biopsy No
bone marrow biopsy Yes

What was your original treatment? IVIG
Any other treatments other than your current one? Pulse IV Solumedrol, plasma exchange, Cellcept
How long was your recovery time? One severe acute exacerbation in 2005 which took 12 months from which to achieve a partial recovery
Did you receive physical therapy? OT in particular for fully paralyzed hands.If so, did it help? Not particularly, the only thing that helped regain some hand function was treatment and time.
How many times have you relapsed? Please list date or age and severity of relapse on a 1-10 scale. numerous small ones, plus a somewhat chronic progressive disease course, marked by 2 strong exacerbations. First in 2005, rated a 9, took 12 months to achieve a partial recovery. Another in 2007 as result from minor surgery under general anasthesia, took 1 month to recover

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? Medicare plus supp. policy
What did you have at the time of onset? Private insurance
Have you had issues getting any treatments covered? No
Have you had to refuse any treatment because it was not covered by insurance? No

FAMILY HISTORY
Anyone in your family have neurological illnesses? No
Autoimmune illness? No
Cancer? Yes, father = lung cancer

ILLNESSES AFTER CIDP DIAGNOSIS AND TREATMENT
What if any major or chronic illnesses have you been diagnosed with subsequent to your CIDP diagnosis? None 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.

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? Substantially, with reduced mobility, fatigue. Double vision is a major impacting symptom, causing obvious visual problems, frequent headaches and adding difficulty to mobility and balance. I used to be very athletic, but have discovered new interests like gardening, cooking and being the best “house dad” I can be. I have discovered a few new outdoor activities, or light sporting activities as such, that can be accomplished with reduced strength, mobility etc.

How satisfied are you with your maintenance meds? Somewhat satisfied with IVIG, but am increasingly thinking about trying cytoxan or other strong chemotherapeutic agent to try and knock in a remission.

CIDP SURVEY

Today’s date 10/21/09
Gender m
DOB 1929

CURRENT CONDITION
Current age 80
Current level of recovery: full? Partial? Partial I guess.
Do you use any aids for walking or other physical activities? no
Do you receive maintenance physical therapy? no
Can you usually walk without pain? yes
Can you work full time, part-time, or are you on disability? retired
What meds do you take for CIDP? IVIG
What other meds do you take currently? Warfarin, atenalol, diovan, zocor
What symptoms, if any, do you still have. Please rate each on a 1-10 scale a little weakness with 10 being the most severe or painful. weakness 1
Do you have any other chronic conditions? Please list, with age or date of onset. Specifically have you been diagnosed with: Hypertension, cholesterol
Cancer? no
Lupus? no
Thyroid disorder? no
HISTORY
Age of onset of CIDP 60 – 64
Where did you live at the onset of the CIDP? Texas – Colorado
Prior to CIDP onset, were you:
Ill? ?????
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)
Original diagnosis—were you diagnosed with GB? CIDP? Or something else? CIDP
What sort of doctor did the original diagnosis? Neuro
How was the diagnosis made? Did you have a:
spinal tap yes
MRI yes
nerve biopsy no
muscle biopsy no
bone marrow biopsy no

What was your original treatment? PE AND CIDP
Any other treatments other than your current one? tried imuran
How long was your recovery time? Like nearly all CIDP no recovery just held at bay by IVIG
Did you receive physical therapy? If so, did it help? yes, no
How many times have you relapsed? Please list date or age and severity of 67 8 70 an 8 77 a great big 10 in the icu.relapse on a 1-10 scale.

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? yes
What did you have at the time of onset? same
Have you had issues getting any treatments covered? no
Have you had to refuse any treatment because it was not covered by insurance? no

FAMILY HISTORY
Anyone in your family have neurological illnesses? no
Autoimmune illness? no
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. DVT 3 times and I take warfarin for it and I have always been suspicious that veins were irritated by IVIG but then part of the name of this stuff is “inflammatory”

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? Balance and slow down but I don’t know if it is CIDP or old age as I have never had either before.

How satisfied are you with your maintenance meds? greatly

In my last post about the government run clinical trials I listed the wrong website. The correct website is clinical trials.gov (not .org).

CIDP SURVEY

Today’s date 10-23-09
Gender female
DOB July 1970

CURRENT CONDITION slowly progressing
Current age 39
Current level of recovery: full? Partial? none
Do you use any aids for walking or other physical activities? cane
Do you receive maintenance physical therapy? no
Can you usually walk without pain? no

Can you work full time, part-time, or are you on disability? full time desk job

What meds do you take for CIDP? no meds, IVIG

What other meds do you take currently?

What symptoms, if any, do you still have. Please rate each on a 1-10 scale with 10 being the most severe or painful. drop foot both sides-left moderate, right-mild. Numb toes, feet to the knee now spreading to upper thigh on right side. Sporatic numbness on both hands/fingers/forearms

Do you have any other chronic conditions? Please list, with age or date of onset. Specifically have you been diagnosed with: NONE
Cancer?
Lupus?
Thyroid disorder?

HISTORY
Age of onset of CIDP 36
Where did you live at the onset of the CIDP? Omaha, Nebraska
Prior to CIDP onset, were you:
Ill? no
Beginning a new medication? epidural injections into spine for herniated disc

Had you gotten a vaccination? 8 mos prior
Any new environmental stresses, such as mold or pesticides?
possible mold

Were there stressful conditions in your life? If so, please describe (ie, wedding, job loss, etc)
divorce-one year prior

Original diagnosis—were you diagnosed with GB? CIDP? Or something else? CIDP after EMG at first appointment
He pretty much nailed it with just the exam.

What sort of doctor did the original diagnosis? Neuro
How was the diagnosis made? Did you have a:
spinal tap yes
MRI no
nerve biopsy no
muscle biopsy no
bone marrow biopsy no

What was your original treatment? 5 days IVIG every four weeks then tapered

Any other treatments other than your current one? Physical therapy, AFO’s that I wouldnt wear
How long was your recovery time? Still waiting to recover

Did you receive physical therapy? YES If so, did it help? No

How many times have you relapsed? Please list date or age and severity of relapse on a 1-10 scale. no relapse…slow steady progression/declining

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? Insurance
What did you have at the time of onset? same
Have you had issues getting any treatments covered? not yet
Have you had to refuse any treatment because it was not covered by insurance? not yet

FAMILY HISTORY
Anyone in your family have neurological illnesses? Yes, maternal Aunt had ALS, paternal uncle has neuro issues (unknown)
Autoimmune illness? yes
Cancer? Yes, Mother, Father, maternal Aunt and Grandfather

ILLNESSES AFTER CIDP DIAGNOSIS AND TREATMENT
What if any major or chronic illnesses have you been diagnosed with subsequent to your CIDP diagnosis? CDIF 2008, severe, not a side effect

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.

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life?
My daily life is heavily impacted by my fatigue. I do my best to hide the struggles but it’s getting harder and harder to “fake”. I am a Mom of a young boy and it kills me that I cant do more physically with him. It hurts me to watch time go by and I dont get better and it hurts me to know that my husband worries of what may be.

How satisfied are you with your maintenance meds? IVIG has increased to weekly and I’m not happy about it.

REALLY NOT happy about it.

Stacey

-marie

CIDP SURVEY

Today’s date 10/24/09
Gender M
DOB

CURRENT CONDITION
Current age 72
Current level of recovery: full? Partial? Partial
Do you use any aids for walking or other physical activities? Braces/Cane
Do you receive maintenance physical therapy? Yes
Can you usually walk without pain? Yes
Can you work full time, part-time, or are you on disability? Disabled
What meds do you take for CIDP? IVIG, Imuran & Neurontin
What other meds do you take currently?
What symptoms, if any, do you still have. Please rate each on a 1-10 scale with 10 being the most severe or painful. 4
Do you have any other chronic conditions? Please list, with age or date of onset. Specifically have you been diagnosed with:No
Cancer? No
Lupus? No
Thyroid disorder?No

HISTORY
Age of onset of CIDP 59
Where did you live at the onset of the CIDP? NJ
Prior to CIDP onset, were you:
Ill? Prrostate Cancer(no chemo/radiation
ginning a new medication?
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)Recovering from cancer surgery.
Original diagnosis—were you diagnosed with GB? CIDP? Or something else? CIDP
What sort of doctor did the original diagnosis? Neurolagist
How was the diagnosis made? Did you have a:
spinal tap Yes
MRI Yes
nerve biopsy Yes
muscle biopsy Yes
bone marrow biopsy

What was your original treatment? IVIG
Any other treatments other than your current one? No
How long was your recovery time?
Did you receive physical therapy? If so, did it help? Yes/Yes
How many times have you relapsed? Please list date or age and severity of relapse on a 1-10 scale.

INSURANCE
Do you currently have private insurance or Medicare/Medicaid? Both
What did you have at the time of onset? Private
Have you had issues getting any treatments covered? No
Have you had to refuse any treatment because it was not covered by insurance? No

FAMILY HISTORY
Anyone in your family have neurological illnesses? Yes. Older Brother has neuropathy. Tested for hereditary PN(one gene) negative
Autoimmune illness? Brother CIDP Cancer?

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.

ESSAY QUESTIONS (optional)
How does CIDP impact your daily life? Its a daily challange.

How satisfied are you with your maintenance meds? No