KatyK
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July 13, 2010 at 8:27 pm
Ken, I have been thinking of you lately and wondering how you’re doing.
I am so glad to hear from you. Please know that even though I have lots of hope that the stem cell will help you I am still relying on prayers and the powerful energies that this forum has formed for those with CIDP.
I love you because I admire your mind, your awareness and your deep concern for others. Please give a hug for me to you wonderful caregiver.July 13, 2010 at 1:39 amHi Dick,
I was happy to hear that you are enjoying golfing again. You’ve set the wheel in motion for hope and inspiration and rang a positive tone for all of us.July 13, 2010 at 1:32 amCIDP is a rare disease and most doctors have never seen it in their lifetime.
My neurologist with 33 years of experience was baffled, but he used all the resources at his command to diagnose me in a timely fashion.
The quicker the nerves receive proper treatment, the less damage is done.
I have learned from this forum that the right doctor is most important and many here have gone for 3 or more opinions before they were helped.
I was just lucky.
The best doctors are always open to a patient who seeks a second opinion.
I write down my questions before I go to an appointment and even if the answer is maybe or I don’t know I can accept that. So many knowledgeable and caring people on this forum have helped me learn a lot and have suggested places to go for information.
We are like snowflakes, because we can vary so much in our symptoms. Some do not respond well to the standard treatments either and need immulnosuppressant drugs or cytoxan. A combination of treatments may work better for some.
Ask questions here and learn all you can. This disease is too serious to delay getting a second opinion or to not be getting proper treatment of the right kind or the right amount.
Happy have you aboard and I will pray for your strength to return and your recovery to be a success.July 7, 2010 at 4:11 amI believe the power of prayer can be miraculous. Sending prayers for the full and speedy recovery of the zookeeper. I will also add prayers for you and Emily.
July 3, 2010 at 4:10 pm🙂 I truly enjoy your gifs. Thank you and God Bless this great country!
June 28, 2010 at 2:28 pmI agree with the other posts that you need more treatment than you are getting. Try a 2nd or a 3rd opinion and make sure the neuro is familiar with CIDP. Many neuros and specialist have never seen this disease in their lifetime.
There may be different causes for CIDP and there are variants of CIDP also.
GBS and CIDP have been associated with flu vaccinations and other vaccines, but nothing has been proved.
Some people do not respond to IVIG, Prednisone or Plasmapheresis and need Cellcept or other immunosuppressants. Cytoxan is a cancer drug that can arrest the disease in other people. Stem Cell Therapy is also an option.
Keep posting and asking questions. There are so many knowledgeable and helpful people here that someone is bound to come along and head you in the right direction and give good advice as some already have.
Prayers and Blessings for you.June 28, 2010 at 2:09 pmYou could try the yoga and see how it feels. Don’t overdo anything, but a little exercise of some kind can help the ligaments, joints and tendons.
I truly wish you well and will pray for you.June 28, 2010 at 2:06 pmI hope you receive you SSI without too much trouble. I don’t know exactly what it takes, but if you find the right doctor and the right attorney I think it would help and getting all the information you can ( as you are doing by asking question) should help too.
I wish you the best and offer my prayers.June 28, 2010 at 2:00 pmGreat to hear about Emily’s great accomplishment. I know she will recover completely and never look back.
June 27, 2010 at 11:25 amIt’s great that you have been so proactive and and thus are receiving the treatment that is not only healing you, but making your life more liveable as it should be.
I hope you get continually better and thank you for sharing this valuable information with all of us. We need to know about the best that is available.
Many blessings!June 27, 2010 at 11:20 amLiz I commend you! ” Ask and ye shall receive.” And yes sometimes I am learning that we have to ask more than once, but it often pays off.
Sounds like you live in a very beautiful place in Florida and if you can eaily get to your shopping what a life. I just know it’s going to happen.June 14, 2010 at 4:54 pmLittle Emily is lucky to have a Mom like you, and a wonderful member like Withhope to share the ins and outs of IVIG.
I am expecting emily to recover fully and I wish you a great summer!June 11, 2010 at 2:30 pmMost doctors have never even seen CIDP in their lifetime and I don’t think even the experts know the cause. There could a combination of triggers in susceptible individuals and we’re all like snowflakes anyway.
It seem the important thing is the right doctor, the right diagnosis and the right treatment. Delaying treatment or getting the wrong treatment can can residual problems later.
My Prayers and Best WishesJune 11, 2010 at 2:24 pmHang in there Chrissy. Jessicah said it all very well. You’re a winner!
June 11, 2010 at 2:20 pmI forgot to suggest that you might want get a chair for the shower. You might find one on the net and sometimes you can find then in magazines that advertise home and medical supplies or you could call a local medical supplies store and see if one could be delivered or picked up by you.
The sooner you get the right treatment the sooner you will get stronger. It’s important to treat the nerves as quickly as possible to prevent irrepairable damage.
