KatyK

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  • February 4, 2011 at 4:33 pm

    I had a nerve and muscle biopsy done together. The surgeon said there would be a little numb spot on my ankle and he was right! Afterwards it was sore and they supplied me with tylenol/codeine which knocked out the pain completely. The pain went away quick long before I finished the bottle.
    I was afraid, but the biopsies not only ruled out a multitude of diseases some of which I had never even heard of but it quickly got me diagnosed.

    February 4, 2011 at 4:22 pm

    I am no longer taking Prednisone which worked wonders for my CIDP after only 2 years. After the first three months on Prednisone I had No More Pain and after six months it was slowly reduced. During that two years I washed my hands took vitamin C and sterilized everything especially my toothbrush.
    I have never had a flu shot or a shingles shot.
    I still have not had sniffles, cold, flu, infections or any other malady.
    My Doctor expects the rest of the nerves in my feet to come back completely and I function normally now with no Meds.

    February 4, 2011 at 4:07 pm

    HI Gary,
    Good to hear from you and wish you well. Don’t be afraid to follow the doctor’s solution and rest the injury completely for awhile. Give it plenty of time to heal. You will gain a lot by allowing the healing. Later when you start exercising again just start doing a little and taking it easy and adding more exercise in small increments so you won’t reinjure yourself.
    The muscle and tendon will come back in it’s own time with TLC and you will be as good as new. What you lose by patiently resting will all be regained once you ease back into building up again.
    I had to completely baby my badly injured left arm and it paid off.

    February 4, 2011 at 3:48 pm

    Taking care of both CIDP and RA is the best news I’ve heard in a long time!
    I’m hoping against hope for you and your husband is right, you really are special. Please keep us posted. We’re just as excited as you are.

    January 18, 2011 at 12:56 pm

    I decided to go gluten-free somewhere between 3-6 months after I was diagnosed with CIDP. I couldn’t tell for sure if it was from the prednisone doing the healing or becoming gluten-free that gave me a feeling of well-being, but I am still gluten-free.
    About two months ago I had an attack of urgent diaherra and all I had eaten was some frozen cauliflower with spices. I told myself to doublecheck the spices and sure enough WHEAT was inlcuded.
    I don’t want to get tested because the gold standard is an intestinal biopsy.
    I would rather go gluten-free because it does not harm one’s health to do so.
    There is a blood test that may or may not be accurate. Also I recently learned that older adults such as my self can develop celiac disease later in life although it was not present in younger years.
    There is not only celiac disease, but gluten sensitivity and gluten allergy which can cause problems.
    After 2 years of prednisone and tapering off slowly with continued improvement Iam no longer taking any meds for CIDP and I will continue to go gluten-free whether I need to or not. It Can’t Hurt.

    January 13, 2011 at 2:13 am

    Sending lots of prayers and hope the matter gets resolved quickly.

    January 13, 2011 at 2:07 am

    Well done, Alice! If Congress who controls the interstate commerce commission ever gets smart and passes legislation to allow us to buy insurance across state lines then the competition among insurance companies will lower premiums and offer better health care for the money, and greed will have its comeuppance.

    January 1, 2011 at 12:19 pm

    It’s amazing how those moments of success can surprise us. Thank you for sharing and let’s all be grateful as we celebrate the New Year! Think of what the next year might bring.!

    January 1, 2011 at 12:08 pm

    Adorable Baby Picture! Happy New Year to One and All!

    January 1, 2011 at 6:13 am

    Alice, Expect the best!
    You’ve already proven beyond a doubt that you can make the best out of the worst!
    You are filled with such an abundance of positive energy that all those lawbreakers will want to leave town.
    I’ve mustered up so much positive energy for you that I know it’s turning cartwheels in your direction.
    Those fears better get out of the way.
    My little kitty cats have been astonishing because everyday they inspire my soul with their living example of positive energy in action. They Know.

    P.S. They are sending positive energy to you right now (we had a little talk) along with my positive energy and all the positive enery that you will receive from others.

    August 21, 2010 at 2:46 pm

    Sorry to hear the news about you wife, but she will get better.
    It seem that you need to question your doctors about more treatments and also the proper rehab exercises. Don’t wait for things to return on their own without medical help of some sort. More damage can be done here.
    We welcome you with open arms and please keep responding with as many questions as you can think of. There are so many here who can help with good knowledge and experience.
    Get back to your neuro as soon as possible..

    August 21, 2010 at 2:32 pm

    Hi Sharon!
    We are sharing with you in prayer and positive thoughts. How wonderful of you to help and educate us with the latest medical treatment you are now receiving.
    God Bless You!

    August 12, 2010 at 2:48 am

    Sounds like your getting better suddenly. That’s so good. Just listen to your body and rest as much as you need and take it easy. It’s good to hear you’re improving!

    August 10, 2010 at 3:21 am

    Hi Carol,
    I’m sure glad you posted. I rarely get a PM and I just happened to notice you sent me one two weeks age. I apologize for the delay and I dont know if you received my answer. I’m a bit technologically challenged.
    Here’s my info: I live in Nevada and my nerve and muscle biopsy was done here. My Neuro sent it to Salt Lake for a second opinion.
    Dr. Kevin M. Flanigan, M.D. did a diagnostic evaluation of the specimen at the Department of Pathology in the University of Utah Health Science Center,
    1-800-348-2787.
    Perhaps a second opinion would be in order for you. Also contact
    [email]info@gbs-cidp.org[/email] for a neuro in your area.
    We are all different in our sypmtoms and in our response to various treatments.
    I will send prayers and positive energy your way and I hope you get better and stronger and reinvigorated with the challenges of this complicated disease.

    August 9, 2010 at 4:43 am

    Leiana,
    I have positive thoughts and many prayers for your Mother. Who knows what little miracles are in store along the way.