cidp

Oo, havent heard of that, would like to tell us a little more about it?

hey folks,
CIDP (chronic inflammatory demylinating polyneuropathy) is a blanket term used to cover many nerve/mylen sheath disorders. Its a condition where the immune system attacks the mylin sheath that surrounds the nerve axion. It causes two things generaly, that is conduction block (loss of tendon reflexs because the muscles are not getting a signal) and complete nerve damage, many times unrepairable. Most of the time its triggered by infection, either viral or bacterial (lymes disease/west nile virus to name the two biggies) or trauma. there are generally two ways it proggresess. Proggresive/ relapsing.
Its a shot in the dark, but im hoping that someone has had experiance in overcoming the debilitating aspect of the disease.
Thanks! ndavern

I did a quick search on the internet and found some info on the support group for people with CIDP and related conditions - - though perhaps you may know of them already.

Though I am not familiar with the condition, I would guess that, similarly to other auto-immune diseases, anything you do to relieve stress, tension and negative emotions, could be helpful - many complementary therapies could do the trick here, but do check with your doctor if there are any contra-indications.

Masha

Hi Ndavern,

I was wondering if you had finally found a treatment that helped your CIDP since your last post? Only about 500 people in the UK have this disease making it much rarer than Multiple Sclerosis. The symptoms can be so similar to MS it often gets misdiagnosed.

The crucial difference is that in MS the white matter (myelin covering the nerves) is damaged in the brain/spine (central nervous system) whereas with CIDP the damage is located below the spinal cord, often at the nerve roots just below the spine.

However, CIDP can sometimes also affect the optic nerve and parts of the brain that deal with balance. Heat/bath intolerance, unpredictable fatigue episodes, numbness of the extremities and sexual problems are often shared by the two illnesses, and although in CIDP there are usually no reflexes in the lower limbs, MRI scans are often the only way to tell the two illnesses apart.

I was just wondering if Low Dose Naltrexone may be worth trying for some people with CIDP, becuase many claim that it helps with MS.

Hi. I've had CIDP for about 5 years now. I was treated with IVIg. I can't give you any suggestions in medications, but in I can suggest a few eating habits. At the time I was diagnosed, I was going to a holistic doctor; because of the similarities between MS and CIDP, he reccommended the Swank diet. This basically states the need to cut down on saturated fats that contain prostaglandin 2, which promotes an inflammatory response and worsens symptoms of myelin sheath damage: mainly contained in processed foods, fatty dairy, red meat, etc.. The diet supports the intake of necessary nutrients such as Omega-3 and unsaturated fats/ fatty acids coming from fish, nuts, some oils, and supplements. It also promotes fresh vegetables and fruits as a large food group. I knew a few pwople who had tried this before, and you could hardly tell they wre ill. We decided, hey, what could it hurt. Immediately after I began the diet I lost my fatigue and grew stronger in balance as well as normal strength. This may just be luck, for I have been healthy without significant realapses. I don't know how serious your symptoms are, but I hope that some of this has helped you. Good luck with everything.
~Jasmine

Hello Ndavern,
I have had CIDP for about 5 years now, and received IVIg. I may not be able to reccomend any medication, but I can suggest extremely beneficial eating habits. When I was diagnosed, I had been going to a holistic doctor. He reccomended I look into the Swank diet, originally for MS patients. On further investigation, I decided to give it a try. The diet consists of highly reduced amounts of saturated fats, such as those in red meat, fatty dairy, processed foods, and a hearty dose of healthful unsaturated fats, such as Omega-3 and fattay acids found in fish and nuts. The reason saturated fats are esentially cut from the system is that, contained in saturated fats is prostaglandin 2 (<a class="go2wpf-bbcode" rel="nofollow" target="_blank" href="PGE2">PGE2), which promotes an inflammatory response and worsens symptoms of myelin sheath damage..(just what we need, right??) The diet leans heavily on fresh fruits and vegetables, grains, and foods that are beneficial for your body. This is no miracle cure by any means, just my story. After I began eating this way, my fatique nearly disapeared and I gained balance, feeling, and strength. This may just be luck, but I haven't had any significant relapse. I don't know how serious your symptoms are, though. I hope I was at least of some help. ~Jasmine