CIDP is defined thus:
• 'chronic' refers to the gradual course of the illness;
• 'inflammatory' means there is strong evidence that it is inflammation that causes the nerve
• 'demyelinating' means that the damage is primarily to the insulating myelin sheaths around
the nerve fibres; and
• 'poly[radiculo]neuropathy'; 'poly' means many, ['radiculo' means root,] 'neuro' means nerve
*'Radiculo' is sometimes omitted.
and 'opathy' means disease; so poly[radiculo]neuro-pathy means a disease of many peripheral
nerves [and their roots (which are the points of origin of the peripheral nerves from the
........Over the last few years the understanding of CIDP has increased and it is now believed that CIDP
is the name given to a chronic disease of the peripheral nerves that reflects a number of different
ways in which nerves can be damaged. Probably the most common is a disorder in which the
immune system attacks the outer insulating nerve layer leading to weakness and altered sensation
that comes on rather slowly often over a few months. Weakness is usually the most prominent
complaint and can be so severe as to confine patients to a chair or bed.
...............A diagnosis of CIDP requires the following:
• Weakness of at least two limbs;
• Complete or partial loss of tendon reflexes;
• Progression over eight weeks or relapses;
• Evidence of myelin damage in the peripheral nerves from nerve conduction studies.
......You and your family and friends
A diagnosis such as CIDP of a chronic condition with an uncertain prognosis, may well throw a
strain on family and other relationships. You may find it difficult to accept help when you need
it, or your family and friends may feel that they cannot give help or become overprotective
toward you. It is difficult to carry on family life as if nothing has happened. Everyone concerned
may have to take on new roles. If you and your family and friends are able to speak openly and
honestly with each other you will probably find that you are able to help each other through
difficult times with the result that the bonds are strengthened.
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My name is kelly and I was diagnosed with cidp about 3 years ago after being told I has ms,arthritis,fibromyalga,chrons,lime disease. and here is the best one, "patients needs pchyological help due to pain med dependance and hypochondria". After alot of dr appointments, I hace cidp.
It all started with severe neck pain and nnumbness in both hands. they said it was carpel tunnel so of course, I had surgury for both. Not even close to fixing the.
Anyway, today I take cellcept, cymbalta, gabasomething,wellbutrin, kadian. and roxicodone for bad days. I did steroids, no good, then a year of ivigs in hospitol. That worked at first and i needed treatments more often, Then last year I developed chemical menegitis from ivig treatment. That happens to many so I can no longer do them. I now go 5 days in hospitol like ivigs but now i do plasma phoresis. I seems to be fab right after, about 1 month later, i am losing effects. but not so much that I am back in bed. I am a mom of 2 just recently divorced.I have lost dexterity in hands, have lots of pain and very heavy legs. I fall down on a regular basis so i am moving to a one floor place so no more steps. Whatelse? So much that I will wait for any one to reply and ask.Fair enough???Kelly
Hi Jessica, I was drawn to your post because your symptoms the shooting pain being cold and exhausted are all the things I went through. I'm writing you to offer my support and share my experiences with you.I have had cidp for 8 yrs. It took 22 months to get the right disgnosis because someone read my spinal fluid test improperly. When I started Ivig I was ready to kill myself the pain was all over my body like I was being stung by bees,walking on glass and tazzered I had 5 days og Ivig and had fasiculations everywhere. It took 2 years of Ivig every 2 weeks to finally start to feel better and not be in pain all the time.gabepentin helps with the parethesias and I'm feeling much better. I now get ivig every 3 wks. and I have more good day than bad. Hang in there you are not alone. Wishing you the best Chuck
Jessica please join CIDP and GBS support. You will meet others and can text. I am 4 months to disease and you will make friends. I am meeting ppl my age. Best of luck. This disease sucks at 55, cannot imagine being young with it.
My boyfriend of 30 years was diagnosed with CIDP 5 years ago and i find he has become very impatient and defensive. I can't talk about money or any other subjects that we normally used to talk about. I even chose to live in seperate living quarters because of the changes in our relationship. Discussing personal problems is impossible.
He had one big crisis and was in a wheelchair for almost 2 months, he rebounded with intensive IVG gamma globuline treatments. He also has pretty severe tremours in the hands, but can walk fine for the moment. He has ups and downs, which can last for months at a time. Sometimes he gets weak legs and walks very slowly. He says his legs feel like he was wearing heavy steel toe boots.
I just find that it has taken a big tole on him, on his personality and on our couple. He is so different from the patient, energetic man he was only a few years ago. I worry about how the illness will progress.