KatyK

Your Replies

  • September 30, 2009 at 6:23 pm

    Hi Diagnonsense,
    It’s best that you discuss the bowel problem with your doctor. It could be the neuropathy and if the bowels are very loose maybe it’s diahrria or parasites or IBS. I don’t know.
    The second thing I’m concerned about is that nerve biopsies are controversial. I had a nerve and muscle biopsy which helped to diagnose my CIDP since my case was complicated. I have a little numbness in my ankle just like the surgeon said I would. I hardly notice this, but I have heard that sometimes people are left with pain afterwards.
    I think the outcome of the procedure depends on the skill of the surgeon and it’s wise to keep in mind that any type of surgery has risk factors.
    If you can get diagnosed without a nerve biopsy that would be great, but I hope you take care and get the right diagnosis.
    Wishing you the very best.

    September 30, 2009 at 5:52 pm

    Hang in there Elmo. I know it’s rough enough being sick without facing hurdles to get help.
    My neuro sent my nerve and muscle biopsy for a second opinion to a Doctor Kevin M. Flanigan in Salt Lake City. That is how I got my CIDP diagnosed.
    The report I have is from Arup Laboratories 1-800-242-2787. There is the University of Utah Health Sciences Center – Dept. of Pathology listed on the same report 1-800-348-2787. It’s a surgical pathology report.
    I don’t know if Dr. Flanigan is in private practice or even if you live in Salt Lake, but maybe you could call those numbers and they could refer you to a specialist in your area.
    Maybe the doctor you will see on Oct. 21 can help you. I hope so. You have certainly been trying. My prayers are with you.

    September 30, 2009 at 11:06 am

    Hi Elmo,
    Elmily’s Mom had the best idea get to a hospital as soon as possible. I wouldn’t put this off while the damage is being done.
    My only other idea would be to call the neuro every morning and see if they have a cancellation for the day because you need to get in quicker than 3 weeks.
    Juggling work and doctors needs divine guidance, good luck or both, but health is everything.
    I wish you the best.

    September 29, 2009 at 10:19 am

    It must be a relief knowing what’s wrong. I hope your suffering is alleviated soon, and I wish you the very best.
    Your persistence and strong will will continue to make your life better.
    I am saying lots of prayers for you, too.

    September 28, 2009 at 10:53 pm

    Five years ago I heard about chemo for Lupus patients in an article from Johns Hopkins Medical Center. I do not have lupus which is an autoimmune disease, but I was diagnosed two years ago with Diabetes type II (autoimmune) and one year ago with CIDP (autoimmune).
    Stem cell therapies have been done in Europe for years and are not new, but very successful treatments for not only type II Diabetes, but for CIDP and probably other diseases as well. Why insurance companies in this country claim stem cell therapies are experimental trials only are false claims that are being driven by money and greed. There I said it!
    Insurance companies should not be making medical decisions that are in the realm of doctors and medical research.
    I could be wrong, but it is my understanding that if you have one autoimmune disease, then you are more at risk for developing another autoimmune disorder. I may be proof of that concept.
    Prednisone might have more of the devil in it than chemo. That’s why I take a boatload of D, Calcium, Magnesium, Omega 369 Oil and a host of other nutrients.
    We all seem to have individual patterns of distress when illness strikes and side effects from various therapies will show up in some, but not others.
    The only thing we know for sure is that Alice is headed for a complete cure and an existence filled with positive energy!

    September 28, 2009 at 6:00 pm

    I am so happy for you Alice. I feel as though I am receiving stem cell therapy by osmosis when I read your reports. That positive energy knows no boundaries.
    Re: Your questions about cytoxan. I just learned about it now from Pam’s post. I would not hesitate to try chemo with or without stem cells, however, I will wait and see what happens when I get weaned off this prednisone.
    What a blessing this site is to learn that someday chemo without stem cell therapy is also an option. Stem cell therapy just seemed out of reach for me, although nothing is impossible.
    Right now I’m just thrilled and excited for your healing.

    September 26, 2009 at 4:43 pm

    Whatever happens, Alice, you will pull through with flying colors.
    I have a direct line and I am ordering an enormous amount of positive energy to be sent your way.
    We are here with you all the way!

    September 26, 2009 at 4:32 pm

    Hi Tara,
    My heart is aching for you.
    I have no medical background and maybe I shouldn’t even say what is on my mind, but here goes. Have you checked any of the varieties of Lymphoma.
    The night sweats, chills and fevers plus the swollen lymph nodes are indicative of something serious and so is your suffering.
    I am praying for all the forces in the universe to help you find the right doctor no matter how many you have to visit in order to get the right diagnosis and treatment.
    Sometimes a disease is so rare or presents in such a way that it eludes doctors and then a patient suffers for years.
    God Bless You. You are on my mind.

    September 24, 2009 at 11:54 pm

    Be careful on those shopping trips, Alice!
    Maybe you could find a surgical mask at the hospital and carry it with you just in case.
    All in all it sounds like positive energy is surging through and healing you!

    September 23, 2009 at 6:03 pm

    Thank you for sharing these difficult but wonderful events.
    Prayers and Best Wishes!

    September 20, 2009 at 6:59 pm

    Thank you Dick and Mark:

    I immediately followed the doctor’s instructions instead of my way.
    I keep strict sugar control and will ask for more medicine from my PC if I need to. I work hard with diet, timing and exercise.
    I keep close watch on my stength and sugar.
    I never fight sleep so I have an odd schedule, but I sleep well and feel rested when I’m awake.
    I will let my neuro know immediately if I see a decline or unwanted symptoms or simply cannot follow the regime.
    Thank God I am retired and can follow any schedule my body dictates.
    Every other day is harder, but I’m going to give it my best shot.
    I’m also lucky that I haven’t needed any thing for pain since last December.
    I hope I can get off this Prednisone and I’m beginning to understand that it is important to do it the right way

    September 20, 2009 at 6:23 pm

    The Best Wishes Alice:

    Here is my blast of high dose positive energy flowing flowing your way.
    I am praying for the the most positive outcome.
    Your bravery will make things better.

    September 19, 2009 at 10:41 pm

    Hi Tara,
    Not having a certain diagnosis is very difficult to deal with. I had very hard time not knowing what was wrong with me.
    I have diabetes and Dr. Farrow told me immediately that it was not diabetic neuropathy.
    My muscles were weak I was falling down a lot and I was in a lot of pain from some falling down injuries as well as from the CIDP.
    Dr. Farrow ordered and nerve and a muscle biopsy as well as then sent it to Salt Lake City for a second diagnosis.
    He speeded the biopsy up so I hope that when I heal my residuals will be non-existent or minimal.
    I was very lucky to get a top-notch neurologist.
    I have to be very careful with self- diagnosis on the internet, because I have gotten scared then realized that sometimes even Wikipedia is not that reliable. CIPusa is another site that I have questions about as well as others.
    I have checked out Mayo clinic and other sites, but a lot of diseases including CIDP run different courses and present with indivdual symptoms and sensations for each afflicted patient.
    The best is a good experienced doctor who order the appropriate tests and solves the problem. Sometime rare conditions eludes even the best specialits.
    Please keep up your hope, Tara, and don’t give up on trying different doctors if necessary.
    Wishing you the best.

    September 19, 2009 at 10:19 pm

    Hi wrtr Mom:
    I went to the crocs.com website and bought a clog called the “Specialist”
    it has non-skid soles and comfy support in the bottom and they are affordable. I also clicked on their outlet store.
    Crocs helped when I needed to protect my feet and I had pain, but now that I am better I realize they don’t help my balance or help me to attain a normal walking gait.
    I now wear regular walking shoes with the removeable arch supports that were prescribed before I developed CIDP.
    I only wear the crocs once in a while now and I still need my walker outside.
    I have been thinking about the Earth Shoe, but I can’t wear sandals or thongs, because they slip off my feet and I don’t even feel it. Earth shoes are expensive. I would want to be sure before I spend the money
    I suspect that your needs are different than mine, but I hope this helps.
    There are lots of options out there.

    September 16, 2009 at 12:27 pm

    Hi Alice and Sophie.
    Thank you for the updates on this amazing process.
    Keep up your good spirits!
    I am praying for double blessings and a complete recovery!
    We are all inspired!