Hi Amy,

My CIPD is improving, but I need my walker outdoors. My neuro asked me if I ever go without the walker and I explained that while indoors I feel safe without it but that outdoors it is necessary and he didn’t tell me to change. Bless his Soul.
A good friend, however, who has never experienced a nerve disorder told me to go without the walker and that I may have become dependent on it.
Maybe experts would diagree on this one, but I will know when I can handle the outside without my walker.
We are all unique individuals and have unique abilities just like athletes in different sports.
You said you are driving some.. I am not sure if I could drive right now, but when I test drive I will know for sure.
I would rather be safe than sorry so I am very cautious when I move around, and I don’t want to end up with more problems than I have already.
I did fall face down on the treadmill 3 weeks ago for two reasons: 1. I had the speed set too high and was almost running. 2. I was wearing crocs and not my regular walking shoes with the orthotics that I had before I got this disorder. My toes caught in foot drop, because I can’t quite do heel and toe. That taught me a lesson.
I mostly walk and do the bicycle and respect the treadmill, but these activites are comfortable for me right now. I think any activity that has us moving must also meet our comfort level and then we can build on that.
I hope someday I can toss my walker and drive again, and in time you will probably not need your AFO’s. Just be careful!

To Alice and Sophie:

It feels like a miracle happening before our very eyes and I know Alice’s courage is the guiding force.
These stem cell therapies have worked in Europe for several years. Why is our country so far behind?
I hope we see more and more young people get their lives back.
My prayers and best wishes are with you both.

Hi Jet:
Oct. 2008 I was diagnosed with CIDP and started on 20mg of prednisone. I improved within a month and the next month the pain went away. The dosage depends in part on the size of the person. I’m a small lady.
In the past 10 monthes my neuro has reduced the pred 5 times and I now take 10 mg every other day.
He is hoping to take me off the prednisone completely and has notified the physician in Salt Lake City who provided a second opinion on my nerve and muscle biopsy that my improvement has been dramatic.
I walk around fine in the house and on any even surface, however when I go outside I always use my walker. My feet and shins have a lot of numbness and I am very careful when I walk. I fell 5 times before the diagnosis.
I hope I can get off the prednisone completely and the neuro says to be patient, because he says the nerves in the feet and toes are the last to come back.
I am left uncertain about my recovery, because if I have a relapse then I will need to resume the prednisone again according to my neuro.
I know that prednisone is a nasty drug with nasty side effects and the longer it is consumed the more harm can be done.
I seems that CIPD has an individual profile for each of us and we all suffer in different ways. It’s probably the same with the prednisone and how it affects each individual.
I was never offered IVIG or plasmaphersis, and I haven’t needed anything for pain since last December. The fatigue and weakness are gone and I can walk with my walker for 3 hours at a time without resting. I also use the exercise bike and treadmill in our clubhouse.
Getting used to an uncertain future ie. whether I will walk normally again and whether I will face a mild or severe relapse or recover completely has made me think in more creative ways about facing whatever happens.
I was also diagnosed with diabetes a few months prior to the CIDP diagnosis.
My sugar control has been very good even though the prednisone can elevate sugar levels and even cause diabetes!
I am 7l, just retired because of the CIDP and I don’t even know if my Medicare will cover IVIG, although I wrote to my Congressman about the bill in congress for IVIG to be included in Medicare coverage. I am not sure, but if my doctor mandated IVIG then I could probably get it.
I wish you well, Jet, and the more information we have about this inscrutable disease maybe the better we can deal with it!

[QUOTE=alice]well the time has arrived– sophie and i take off for chicago tomorrow (sunday) to begin my stem cell treatment… we’ll do our very best to provide updates along the way. many thanks to all that have given their support.
alice[/QUOTE]

You’ve taken a brave and wonderful step Alice! My prayers and best wishes are with you!

Hi Tara,
I agree about Las Vegas Doctors. I believe you are seeing Dr. Lee.
My Doctor Farrow dx me Last Oct. 2008 with Cidp. This dx came after many blood tests, an emg, a muscle test with needles. Then A Dr. Kaplan did a nerve and muscle biopsy which was sent to Salt Lake City for a second opinion.
I think Dr. Farrow dx me correctly and started me on 20 mg of prednisone which he reduced now to l0mg. on day and 5mg. the next.
My energy level is good the fatigue is gone. I still use my walker when I go outside and I walk for 3 hours every other day.. On real hot days I go to the clubhouse gym and exercise on the bike or on the treadmilll. Around the house I walk without support. As long as I have a level unobstructed surface I won’t lose my balance. Outside I have a fear of falling so I take the walker.
I don’ trust a cane right now.
My feet are still numb and so are my shins. Some sensation seems to be returning and I am feeling stronger after l0 months on the prednisone.
I suspect I could have some residual damage, but I don’t know. Nerves take a long time to heal.
I am 7l years old and had to leave my job a year ago, because I kept falling down, getting weaker and weaker and could not even drive my stick shift.
I think I could drive now but I sold my stick shift vehicle and would now only drive an automatic and possibly get hand controls. I can manuever my four-wheel walker on and off the city busses here, because they have kneelers, ramps and lifts whatever a motorized wheelchair, regular wheelchair or a walker needs. I Don’t even need the ramp. This is a blessing.
I have medicare (Senior Dimensions)
and if I needed a second opinion then I would see Dr Richard Lee or even try to change my insurance coverage if I needed a good doctor, because I know a good neurologist here in Vegas is hard to find.
My Dr. Farrow is a consultant on Senior Dimensions and I was lucky to get to keep him. I started out with him on Culinary and now I need a referral to see him which is an inconvenience. If he ever left or retired I would need to get immediate care from someone like Doctor Lee who is said to know all the ins and outs of CIDP.
The IVIG or PP may not even be covered on my plan, but I will question my doctor and check out the donut hole that exists in other plans.
Right now the prednisone seems to be keeping thing under control and I have not needed anything for pain since last December. In l0 months I feel like I have come a long way. I don’t know if my case is going to relapse or if I will progressively get worse.
I am also diabetic with excellent sugar control and I eat a healthy diet as well as take vitamins, minerals and Omega 3’s.
I was diagnosed with diabetes about 6 months before CIDP reared its ugly head.
I was going to get a shingles vaccination until I started reading the posts here and will not get any vaccinations.
I hope we are on the right track Tara and I know the neurological association recommends Dr. Richard Lee. Most neurologists have never seen this disease in their lifetime. My neuro has 33 years of expericence and he has helped me with thorough tests and a cheap effective treatment.
My best wishes and prayers to you and your family.