KatyK
Your Replies
-
October 21, 2009 at 12:39 pm
Forgot to mention that even before actual CIDP diagnosis I was taking about 500 mg. of alpha lipoic acid. A short time later I switched to R-lipoic acid when I found out it was a better form of alpha lipoic acid.
Along with the lipoic I have been taking acetyl L-carnitine a nutrient which is supposed to help with nerve pain.
Last week I logged on to clinicaltrials.org (government run clinical trials) and found they were giving some participants 1200 mg, I believe, of alpha lipoic acid. The others were receiving a placebo. At any rate I upped my dosage of R-lipoic acid from 450 to 1200mg.
The alternative medicine nutriton guide book I read said 4000mg of acetyl L-carnitine would help with pain, but I have only been taking l000mg. This acetyl L-carnitine is not to be confused with L-carnitine.
CIDP presents with an individual course for many of us and It’s too early for me to determine whether I am on a progressive course and could get worse or if Iam relapse/remitting or something else. Thankfully, though, all the pain went away after my first 2 months on 20mg of prednisone daily. Was it the nutrients or the course of my CIDP or is a severe relapse ahead or am I going into remission and then coming back again or maybe never again. I have to learn to handle the stress of uncertainty as well as I can.October 21, 2009 at 12:16 am10/20/09
Female
Age: 71Diganosed CIDP 10/08
Weaning off prednisone. Doc says improvement dramatic.
I use a walker outside only. I have tried and can go on my own, but I’m too scared. I fell down five time before my diagnosis and sustained injuries that have healed. Inside I walk without any support.
Do my own exercise, treadmill, exercise bike and walking outside with walker.
I retired a year ago because of CIDP. I couldn’t drive to work and my retirement was in place to sustain me.
I am now taking 10 mg of pred on alternate days. For Diabetes I take insulin and Glipizide.
I have numbness in feet and shin but seems to be improving.
Overall health is excellent otherwise.
Age 70 at onset.
Lived here in Las Vegas
Just prior to CIDP I was diagnosed with Diabetes.
A year prior to these two diseases I had Peridontitis, because I had a new dentist who was improperly cleaning my teeth with no scaling and only using a cavitron. It only took a year! Prior to this my mouth was in pristine condition as I always had my teeth cleaned every 4 mos. for the Past Thirty Years!
I found a new hygienst who deep scaled and root planed and placed a powered antibiotic in my gums. She brought my mouth completely back to health. Next came Diabetes and CIDP. Today my mouth is pink and healthy so maybe I have a chance to rally back again.
Family History of Diabetes
I was diagnosed by a very sharp neuro with EMG NCV as well as a nerve biopsy and a muscle biopsy. Both biopsies were sent to Salt Lake City for a second opinion.
In the current issue of I.G. Living I read where the current theory about GBS is that a microbe that resembles a nerve infects the body and the immune system then attacks the nerves. It’s only a theory. They didn’t say anything about CIDP.
When gums become infected as in my case a whole cascade of health problems can ensue not only Diabetes, but stroke, heart disease, ostepenia, lung disorders and a whole host of other diseases. That’s why I always took care with my gums.
It’s my understanding that you can’t get diabetes if you don’t have the gene and that CIDP is not hereditary. Maybe they don’t know for sure and I wonder if a microbe got me. When I first became weak, fatigued and started falling down I felt like something indescribable was invading my body and causing strange sensations.
I forgot to mention that I have needed nothing for pain since last Dec./2008.
Prior to that I was taking Lyrica and then Neurontin.October 16, 2009 at 11:32 pmI’ve stored up a whole boatload of positive energy for you, and it’s going to be there whenever you need it. I see a very bright future for you!
October 11, 2009 at 6:15 pmHair’s to You..and..Hair’s to Me..and may we never disagree! Drink up. LOL
Gosh, Alice, I’m so thrilled that you’re sharing this innovative treatment and we’re all dispersing even more positive energy your way!October 6, 2009 at 6:55 pmI’m so thrilled for you Elmo. I was impressed with the feedback from others about this disease and all the medical roadblocks like seeing the right doctor for the right diagnosis that can stand in your way. I didn’t know that CIDP could be that complicated with so many various symptoms.
You took all the right steps and they paid off. Hopefully this will be the right doctor. If not then I know with your persistence you will find the right one and get to the bottom of this.
I wish I had more knowledge and practical suggestions to offer, but I learned a lot just by some of the responses to your predicament. I sincerely hope that you get the treatment that you need and of course that diagnosis.
I can only imagine your frustration, but I hear the fight in you to get the medcal attention you derserve. Keep up the good work and I sincerely pray and hope that you will quickly get better.October 6, 2009 at 12:43 pmHi Elmo,
I agree that not knowing is the worst. I seems you are doing all you can to see a neurologist and I wish you the very best and my heart goes out to you. I know you are suffering. Keep us posted.October 6, 2009 at 12:28 pmHappy Birthday Alice!
It’s wonderful that you get to spend your birthday with your babies. Our pets have miraculous healing powers!
October 5, 2009 at 2:42 pmHi Alice,
You have all the strength and stamina necessary to deal with this journey filled with unknown parts and bumps and rough rides along the way. We are all expecting the best outcome and remember we are with you all the way.
I notice that your abundance of brains are always working no matter what aren’t they? You organized tables! Could you possibly post your tables in small sections? No techie here, but I’m eager to see your work. I hope someone can help make it happen.
I’ve been going back to the months before my health took a turn. Nothing significant surfaces right now. I’m still sorting things out. It’s exciting to know that you have a book in mind. I’d be willing to participate with any useful information, my future outcome or interview questions.
As for the not so nice language: When Emily’s Mom posted about her 7yr old reading with her that reminded me to be careful about my language and it also reminded me that anyone can get this disease at any age.
I know you’ll keep that spirit up and You deserve a basket of sweet flowers if only in thought!October 4, 2009 at 11:26 amHi Noni,
I can relate to a lot of your challenges. Forgive the church leaders, because they don’t understand this disease and many others don’t understand either.
My Life flew out of my control when this disease knocked me down, filled me with panic and left me too weak to fight back My Way. I still fought back, though and I think it was Hope that kept me going.
So many changes and adjustments in my lifestyle and I had to YIELD. After 3and a half months of testing, EMG, NCV, Bloodtests galore and Nerve and Muscle Biopsy I finally received a diagnosis of CIDP in Oct., 2008. I feel lucky to have found a great neuro.
Now, a year later I’m being weaned off the prednisone, feeling better and life is a lot more tolerable. I’m expecting to get even better, but there are no guarantees. Future uncertainties such as a relapse could happen. I’m careful to “hope for the best and prepare for the worst.” I’m trying to control what I can. I count my many blessings when the mood prevails.
On certain occasions I feel overwhelmed, over-sensitive or just plain frustrated. Those are the times I try to put into practice a good friend’s advice: “Make like a dog. Just **** on it and walk away.” Easier said then done. P.S. I still have hope!October 3, 2009 at 2:59 amHi Tara,
I sympathize with your suffering. I hope you have a quick recovery.October 3, 2009 at 2:57 amHi Alice,
Glad you had an abundance of stem cells. You also have an abundance of inner strength that is giving us all hope, courage and inspiration!October 2, 2009 at 5:27 pmWith a Mom like you Emily will be OK. You’re the best. My prayers and best wishes.
October 1, 2009 at 7:31 pmDidn’t mean to double post, but I thought I lost my original post.
October 1, 2009 at 7:29 pmI have racked my brain over this matter and I suspect intuitively that environmental factors play a part.
Main Stream Smoke, Second Hand Smoke, Pesticides, Heavy Metals, Undercooked Chicken, Smog, Air Pollution, Vaccinations, Antibiotics.
Maybe a combination of systemic issues and environmental factors are the cause.
CIDP has been associated with Diabetes, but nothing has been proven conclusively.
Pesticides are everywhere Grocery Stores, Big Box Stores, Restaurants and Apartment Complexes, Condos, Townhouses, and Warehouses.
I have never smoked but have been exposed to a lot of second hand smoke over the years. They started spraying pigeon pesticide where I live about the same time as the CIDP reared it’s ugly head. Arsenic and pesticides can be found sometimes in food and water.
Some smokers get Buerger’s disease and others don’t. Why?October 1, 2009 at 7:10 pmI have racked my brain over this for a long time and I intuitively suspect that something environmental is going on, although not everyone reacts the same way to all the poisons out there.
Second Hand Smoke, Main Stream Smoke, Pesticides, Arsenic, Lead, Mercury and all the Heavy Metals, Undercooked Chicken, Vaccinations, Smog, Exhaust Fumes.
CIDP has been associated with Diabetes but nothing has been proved conclusively.
Pesticides are everywhere, Grocery Stores, Restaurants, Big Box Stores,
Housing Complexes and you name it.
Maybe these disease are a combination of systemic and environmental factors.
Certain smokers get Buerger’s disease, but not others. Why? The only way to stop the progression of Buerger’s disease is for the individual to stop smoking.
I have never smoked, but have been exposed to a lot of second hand smoke.
My neuro ran a million blood tests. I ‘m curious about getting a heavy metals test done. Maybe it was the pest control co. using something to eliminate the pigeons around here. I think I got CIPD about that same time.
I Just don’t know.
