KatyK
Your Replies
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August 9, 2010 at 4:33 am
Dick, I am so sorry for your loss.
I am sure you will recover in due time and a lot the misery you are suffering will go away.
You are very special to us on this forum and I truly appreciate the insight you’ve shown in some of your helpful posts.
My prayers and hugs will hopefully heal you faster.August 7, 2010 at 4:39 amHi Ryan,
You have just shared a poweful story full of strength, courage and hope!
I admire your sense of humor too.
Your wonderful Mom sent us reports about you, but hearing from you first hand confirms what a great example you have set for the rest of us.
You as well as others on this forum who have shared their stories have inspired me along the way and for that I am grateful.
I want to offer special prayers for You and your Mom.BTW I have been taking at leat 600 mg of alpha lipoic acid also known as R-lipoic acid along with acetyl-L-Carnitine. The best price and quality I found was at Best Vites nutrition store online. I comes in a combination capsule.
At [url]www.clinicaltrials.gov[/url] they are doing a CIDP trial with 1200mg of alpha lipoic acid and I did that for a while, but now I only do 600mg of R-Lipoic Acid along with the 2000mg acetyl-L-Carnitine combined in the 4 capsules.
I started that regime before I even got diagnosed and when I started treatment the nighttime pain I felt left after 3 months and hasn’t come back.July 30, 2010 at 3:08 pmI love all kind of music from African drumbeats to Jazz, Oldies but Goodies and Easy Listening to name a few. When I adopted a cat who was scared, fearful and timid I played classical music, because “music soothes the wild beast.” Maybe the kittys good adjustment to her new home was partly the result of the music. Now we listen to all different kinds of music.
July 30, 2010 at 2:58 pmWell said, Gary. Thank you and for all my blessings this forum is one of them.
My prayers and thoughts are with you.July 25, 2010 at 3:18 pmI’m getting a brand new vacuum cleaner.. I remember when I first got this crummy disease I had to sit down to run the vacuum because I didn’t have the strength or balance to stand and push it. Now I can pick it up and flip it.
The old vacuum is giving out after the record number of cat hairs it has dealt with.
The last time I checked there was such an enormous amount of cat hairs in the machine that I looked all over for the cats to make sure they hadn’t been sucked inside. The kitties were fine.July 25, 2010 at 2:51 pmI am sending prayers and positive thoughts your way. You’ve shown improvement which is likely to continue. It may take time. I don’t know if you need a second opinion or other types of treatment or just time to heal. I have CIDP and some treatments don’t work for everybody.
As far as the disability. have you considered an attorney in case the Senator can’t get the help for you?
I am going to keep high hopes for your recovery and the financial help you need. Don’t forget to rest, enjoy the things you can and keep tuning in here to ask questions. Some of the most knowledgeable, caring and wonderful folks in the world may come along to change your life.July 25, 2010 at 1:04 amI don’t think anyone really knows the exact course of this disease.
Some get better fast and others take longer. Certain meds work for some and not for others. It’s a rare and mysterious malady. I like your positive attitude and being willing to adapt to whatever is necessary to do what you want and need to do. I will pray and hope for the best for all of us.
Maybe someday medical research will provide us with more knowledge and there will be more alternatives to a possible cure.July 25, 2010 at 12:48 amHi Mark,
It’s a good thing that you got help right away, and even though you’re going through some very rough times right now It sounds like you are improving and the doctor sounds positive. Hopefully your current suffering is only temporary and later the pain and fatigue will subside.
Right now you need lots of rest and I hope you listen to what your body is telling you. It seems that everybody gets better in their own way and their own time. Take all the time you need. My prayers and best wishes.July 25, 2010 at 12:37 amI live in the desert and make sure to stay hydrated even in the air conditioning. Outside my body tells me when to rest and sometimes I put an ice pack on the back of my neck when I go on a walk. I am more sensitive now because of CIDP medications and age.
I love to sun by the pool, but depending on the time of day or breeze conditions I can only take so much and then head for the shade or air conditioning.July 25, 2010 at 12:17 amI’m so grateful for your wonderful post. Sometime we just can’t explain or even expect others to understand.
July 25, 2010 at 12:07 amI will pray with all my heart for your sister. I will ask for some kind of miracle even if it’s a small one.
God Bless you for being there for your Sister.July 23, 2010 at 5:05 amHi Jeff,
The vaporizer seems like a very smart idea and I certainly hope your suffering is dwindling. Maybe this is the breakthrough that will help your body to fully heal. I am praying for you and sending many blessings your way.July 23, 2010 at 4:57 amHi Cathie,
Many prayers and positive thoughts for you and hubby and your new home.
I have a feeling that this move may be the best thing that could have happened.
Your enthusiasm is contagious and I can’t wait for updates.July 16, 2010 at 3:47 amHi Elmo,
Don’t give up. Could you change you insurance to a PPO instead of an HMO?
I’m sorry and I know there is a doctor out there who can help you.
I watch Mystery Diagnosis on television and have seen story after story where it takes so long for a suffering individual to get a diagnosis. It seem there are many uncommon diseases out there and so many doctors just don’t know.
You could have a rare variant of CIDP or something else.
An aggressive computer search of every one of your symptoms might bring up something.
I will pray hard for a successful diagnosis.July 13, 2010 at 8:32 pmRyan have a wonderful summer! And Mom I admire you more than you know.
I am praying hard.
