KatyK
Your Replies
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November 15, 2009 at 6:01 am
You’re My Soul and Inspiration – The Righteous Brothers
November 13, 2009 at 7:24 pmNight and Day – Cole Porter
November 13, 2009 at 7:23 pmHappy Thanksgiving, Liz! Your gifs brighten up my day. Thank You.
November 12, 2009 at 3:10 amgallop – goal
November 12, 2009 at 2:54 amHit the Road, Jack – Ray Charles
November 11, 2009 at 1:50 pmparlay – lapdog
November 10, 2009 at 6:27 pmKing of the Road – Roger Miller
November 10, 2009 at 2:12 amWill You Love Me Tomorrow – Carole King
November 8, 2009 at 9:00 pmSerpentine Fire – Earth Wind and Fire
November 8, 2009 at 3:22 amI am overjoyed to hear such good news! Wishing you a safe trip home!
November 4, 2009 at 2:12 pmThank you for sharing the good news. I had to laugh about the Jane Crawford poses. Wishing you the best, always.
November 4, 2009 at 2:03 pmA pleasure meeting you Michael!
Chia seed are a great a great source of Omega 3’s. A website you might want to visit about the essential fatty acids is [url]www.udoerasmus.com[/url]. Udo Erasmus is a very interesting nutritionist. I think you will find his autobiography on that site also.
Another website is [url]www.IGLiving.com[/url] where you can sign up for free copy of I.G. Living in print or via E-mail. They have great articles about C.I.D.P. GBS and other neuropathic disorders.
The GBS/CIDP Foundation says: “Current theory on GBS suggest that the body is infected by a microbe that somehow resembles the nerves. So when the immune system targets the intruding infection, the nerves are attacked inadvertently.” This is only a theory, however, and who knows maybe there could be a microbe infection in CIDP. No proof for these theories but I have been taking extra Vitamin C and lysine especially since Prednisone lowers the immune system’s resistance. I don’t want the H1N1 either.I think we all have different nutrional needs depending on diet and age or diseases and lifestyle. The Mayo Clinic website denotes some of the nutrition needs of Vegan Diets.
I wish I had a cure, a vitamin, a cause, a diet or the perfect medicine for CIDP, but in the meantime I can only speculate. Perhaps it’s a combination of factors that can help. Mind, body, and environmental conditions are all factors to consider.
This website has taught me so much about the variations that exist in GBS and CIDP and the indivudal paths that these disorders take. I can only hope that someday going into remission will be the norm for everyone or that autoimmune disorders can be eliminated entirely. My curiosity and desire to get well keep me going in spite of the limited knowledge that I have. I don’t think I will ever learn enough, but then again all it takes is one good idea
Keep sharing and I hope you will recover completely.
.November 2, 2009 at 9:58 pmHi Mike!
I’m 7lyrs old and my health never wavered until a year and a half ago.
I was feeling fatigued and discovered I had diabetes. My feet were sore and my shoes were old and the diabetic education classes said that my feet would get better with good sugar control.
A few months later after falling down several times I was diagnosed with CIDP. EMG NCV and nerve and muscle biopsy determined it was not diabetic neuropathy.
I was given 20mg of the dreaded and contrversial prednisone in October of 2008. The CIDP kept improving and I kept getting stronger legs and arms. My Neuro kept reducing the dosage all along and last August said I had improved dramatically and is weaning me off the nasty prednisone. I am now taking 10mg every day. All along I have been vigilant with my sugar control and have not needed to up my diabetic meds in spite of the prednisone.
I have needed nothing for nerve pain since last December. I still have numbness in my shins and feet and My Neuro who by the way sent the nerve and muscle biopsies to Salt Lake City for a second opinion told me to be patient, because the nerves in the feet are the last to come back.
I am going to see him again in two weeks and for the last 3 months I feel stronger and my balance also seems improved. All of this improvemnet seems to occur only inches at a time, but I’m aware that I am better.
I want to get off the prednisone and I don’t know what will happen when and if the doctor says I can stop. He did mention that if I get weak again then we can start back up to higher amounts.
We have not discussed other treatment options. I am learning more and more about this disease from this wonderful site and I think highly of my Neuro, and the uncertainty of a prognosis which is understandable in a disease such as this that seems to often run an individual course in many has still left me with hope.
The fatigue left months ago also, but I tend to overdo my physical activitiy at times and I have to rest rest rest. I am learning. If I need a nap or a breather I listen to my body. I retired soon after this disease hit and I was lucky I had my retirement in place. The timing couldn’t have been better, but If this CIDP hadn’t come along I’d still be working.
I went to clinical trials.gov and found they are doing a trial for CIDP with alpha lipoic acid.. I have been taking alpha lipoic acid and acetyl L Carnitine since I was diagnosed. I also take a sublingual B12 and my multi vits and minerals have plenty of calcium, Vit D3 and magnesium which helps fight bone loss. I also make sure I get my essential fatty acids. Omega3′ especially, but I take Udo’s Choice oil blend. I primarily eat Beef, Chicken and Fish along with lo carb veggies a little fruit, lo fat yogurt and soy milk and all sorts of nuts. I have had to eliminate grains, rice, beans, bread,, cereals , corn and peas and other high glycemic food because of my sugar and the prednisone effect. I think the Zone Diet is similar. I am also interested in learning to cook with Tofu, because I read that soy is the perfect food for diabetics.
I know you will find the right paths to follow, Mike, because your are so perceptive and earnest in finding the right medical help. I am glad you have found access to the right doctors and being on top of this disease. Please keep sharing with us and God Bless You and Your Friends and Family.November 2, 2009 at 8:51 pmSorry to hear you’re headed downhill, but it’s uplifting to hear you’re going to Johns Hopkins. I understand they are the best.
Prayers and very best wishes. Take Care.November 2, 2009 at 8:46 pmUnloading groceries? There are two wheel grocery carts and four wheel grocery carts and they fold up so you can keep them in the car. Also I’ve seen my neighbors use a child’s little red wagon.
I take my four wheel walker to the store and using my own canvas bags I strap them on with bunji cords.
I’ve seen backpacks with wheels and I’ve even carried stuff home in a back pack.
The last option would be a mule. LOL
My prayers and best hopes are with you Chrissy. You seem resourceful and determined and I know your life, health and finances will improve.
