Types of CIDP

by SIDP…Do you mean sub-acute CIDP? IF so, the acute, sub-acute or chronic onset I always thought applied to how long it took to come on and then ‘hang on’.

It sure sounds, and I’m no doc by far, that you have some sort of chronic version…relapsing or not. More importantly is what the doctors are doing by way of treating you to keep any flare-ups from happening and knocking you down flat. Ultimately, only you can determine what you REALLY have, whether your doc[s] agree or not. Only you can crusade for whatever treatments or therapies you might benefit best from.

As far as symptoms disappearing? Do you mean you get totally back to normal? Or, is there some damage? You could be healing in some ways and then be ultimately ‘deteriorating’ in other ways in other nerves or areas.
This all is why no neuro will ever say definitively that you have X or Y! Nor will they say that you will recover! They always are optimistic but hedge the bets all over the table. That’s because each of us is different, we respond to treatments differently as well as come down with this stuff differently as well.

The only key to sanity for me in all this is trying to keep a good attitude. Yes, it is practical to file in the back of your mind what is the worst that could happen, but don’t let it interfere with your determination to achieve any and all bit’s of normal that you can find!

I like your last statement and I will show my husband . We all need to do that including me the caregiver. It can be so hard to see someone in pain, falling, ect. I know I need to be more positive. Maybe women are just more emotional but I know he has not been the same person . Seems better today. Improvements do help don’t they

There are many variants of CIDP and some diseases that are quite similar to CIDP and at some point I guess they will get it all straightened out and put it in a textbook but meanwhile here is what I found on emedicine…

[QUOTE]The term chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) has been used to identify patients with a chronically progressive or relapsing symmetric sensorimotor disorder with cytoalbuminologic dissociation and interstitial and perivascular endoneurial infiltration by lymphocytes and macrophages. In many ways, CIDP can be considered the chronic equivalent of acute inflammatory demyelinating polyradiculoneuropathy (AIDP), the most common form of Guillain-Barré syndrome (GBS).

A number of variants of CIDP have been described that have immune or inflammatory aspects and electrophysiologic and/or pathologic evidence of demyelination in common. No consensus exists on the best approach to the nomenclature of these disorders. CIDP is a major subset of chronic acquired demyelinating polyneuropathies (CADP). In this context, CIDP is considered when patients have a symmetric proximal and distal motor predominant disorder.

CIDP variants include patients with predominantly sensory symptoms, those with a distal symmetric disorder (DADS), those with multifocal sensorimotor neuropathy or sensorimotor mononeuropathy multiplex with prominent conduction block (also known as Lewis-Sumner neuropathy), and those with CIDP with associated CNS demyelination or with other systemic disorders.

The following disorders are considered distinct from CIDP because they have specific pathophysiologic features and respond to treatments differently than do patients with CIDP: Demyelinating neuropathies associated with immunoglobulin M (IgM) paraproteins, including those with anti–myelin-associated glycoprotein (MAG) antibodies; polyneuropathy, organomegaly, endocrinopathy, monoclonal gammopathy, and skin changes (POEMS) syndrome; and multifocal motor neuropathy.[/QUOTE]

and here is the link to the complete article
[url]http://www.emedicine.com/neuro/TOPIC467.HTM[/url]

and now to your questions
[I]when they say that symptoms progress that they are meaning active demyelination and the results of that? [/I] – yes as well as the associated inflammation

[I]So when symptoms disappear do they mean that you quit demyelinating and start remyelinating….or is it more extreme than that[/I]. – what could be more extreme than that? Sorry, a weak attempt at humor… by your symptoms disappearing I am going to assume you mean that you get back to normal, you have no weakness, no fatigue, no numbness, no tingling – if this is the case then I think it’s safe to assume you have successfully remylenated your nerves to a level that few of us have managed to achieve. I am similar to you in that I go back and forth without treatment – I’ll get better for awhile, then I’ll go downhill for awhile, then I’ll go uphill but overall each downhill slide leaves me a little more incapacitated. Since I’ve been getting the IVIg I haven’t gone downhill, I’m getting better and things are starting to level out. We’ve got a long way to go but I can see a difference now. However, I doubt I will ever be back to “normal” again as patching your nerves is never as good as the original. Still, I’m much better than I was when I wasn’t getting treatment so I encourage you to keep beating the bushes for a final diagnosis so you can start treatment. Most insurance companies like to have a diagnosis before starting IVIg, however two years ago I was able to be approved “just to see if it would make me better” and it did so now I get it every three weeks.

It’s a tough road but worth the fight to get some normal back in your life, even if normal just means being able to feel yourself brushing your teeth. Good luck and come back and let us know what happens.

Julie

Most definately flare ups or relapses can be caused by an illness, particularly if that is what caused your nervous system to get confused in the first place. And hypothyroidism can also cause tingling and weakness, you might consider switching to a different endocrinologist – there are wide varieties in what doctors consider too high and most have come down to “above 5” whereas it used to be “above 10”. In addition, I have family members who’s levels were only 3 but experienced neuropathy relief with Synthroid. At least ask your endo if s/he would be willing to consider a low dose as a trial to see if you improve. Illnesses can also aggravate hypothyroidism enough to make you feel worse.

hello everyone–

i’m alice– 42 yrs old, and a police officer in san francisco. i have been off work due to my condition since around february…

let’s see– in dec 07, after a stressful period and a bout of shingles, i began to feel numbness in my toes and finger tips– it progressed in a week or two until i felt numbess on the bottoms of my feet. then i got a flu– right around the new year– and i thought i was dying…

i saw my gp right away who set up a referrel with a neuro– i saw him eary january. he ordered up a million tests: mri, chest x-ray, blood work ups for everything, nerve velocity test (fun)– he believed i had cidp and refferred me to dr. jonathon katz– he is a specialist in neuro-muscular stuff.

katz agreed: cidp it is. we took a conservative approach together– no treatment, only pain management– he believed (hoped) i would get better on my own…

as the months passed, i slowly progressed– numb legs, buttocks, hands and wrists– lots of pain– imbalance, etc…

neurontin did nothing for me except made me dumb 😉
he then suggested cymbalta to help with pain and mood– as he thought the illness was affecting my state of mind… it helped at 1st, a lot… then wore off. i weaned myself off it about week ago… i think i am having withdrawal symptoms from ceasing cymbalta but am unsure due to having begun ivig– don’t know if what i feel is one or the other– my pain level, now is excruciating– it (my pain) and my inability to walk are the worst parts for me…

so– currently, i am doing ivig– i did the 5 days last week and will have 2 treatments a month for 4 months– and then i guess my doc and i will take a look at its efficacy…

i am open to any info and would like to be in touch with others with CIDP–

alice

I have been praying for that treatment and hope my CIDP can be treated. There are a few forms that have no initial treatment. I should have been on IVIG’s years ago but got misdiagnosed. Hope all goes well with you. Me! Being new to this name, CIDP< I have no idea of what I am just yet!

Hi Alice – Welcome to the big family here. A couple quick comments here-good advice I got from Dawn-I know she will writing you and Linda both to say hi. Are you premeding before your ivig with Tylenol and Benadryl and also I take Motrin(some take advil) 1/2 way through the infusion and continue later in the day woth the tylenol and benadryl and even the next day AND drinking lots of water and juice to keep well hydrated? Helps alot with the pain and reduces the side effects of the ivig.

Another drug for the nerve pain that has helped some is Lyrica-I am still on the neurontin, but going to ask my neuro if I can switch-less pills per day and maybe more effective for the nerve pain.

We each have to keep trying treatments and tweaking them until we find what is right for us.

Again, welcome. Take good care Alice.

Emma

can anyone tell me how to post independently of replying to a post– pain meds are distorting my intelligence…

thanks, alice

Hi Alice, Welcome to The Family. To post your own thread, hit the new thread words and fill in the title box then start your paragraphs in the large box. if you need more info just hit my name and send me a private message(pm). to read your pm just go to usercp and hit read messages. don’t feel bad it is kinda technical and alot to remember. Take care.