[ras1256]

Hi there,
I haven't been formally dx'd yet, but testing is underway, and I'll be amazed if I don't have CIDP (14 yrs. worth!).

That being said, I have got some muscle wasting in my hands, feet, and legs, and lack of vibration sense in several places. 40mg's of Prednisone per day for the last month as meds, and at Mrsd's suggestion (thank you VERY MUCH) I started 2 grams of Acetly Carnitine a few days ago, in case my increase in symptoms is due to platinum toxicity from an aneurysm coil I had done just before this exacerbation.

Tonight, I had the pins and needles like when a foot that has fallen asleep starts to wake up, and my feet were actually WARM for a change. The pin/needle sensation lasted just a few minutes, but I'm wondering if that means my foot is waking up?

Can I be encouraged by this? or is this just the normal eb and flow of the symptoms?

Thanks.

[mrsD]

Only time will tell.

But my feet tingled like that for months, as they woke up from the improvement in my hypothyroid state.

Tingling can mean both healing and deterioration, and it depends on you which one it is.

I'd be optimistic and consider healing. A good belief system and attitude is important too.

[dahlek]

Thing is, less is known about nerve healing than there is about nerve damage/death! Snails and mice seem to be the current 'research animals'.

Nerve death and regrowth pains are very similar. In my own experiences [full-out CIDP] the onset pain was fairly consistent peripherally...and excruciating. As it progressed, it was a humm or buzz that worked its way up my limbs to points well, unmentionable. Pain killers really don't get to cut the pain all these minute nerves are experienceing when dying or being stripped of protective cover [meyelin sheath].

Treatments are limited: Plasmapherises [sort of like a dialysis for the blood]; steroids [stopping immune system attacks]; IVIG [infusions of immune globulin - a portion of donated blood that outnumbers the IG's attacking your nerves and demeyelinating them]; and for some, pain killers work to ease the overall pain. That is IT!

As for absolute diagnosis? Well, based on what I've read in your postings, you have many issues which can overlap or contribute to an acquired immune system response [which is what CIDP is]. Just take a look at this index for an overview of how many things can happen... they all make diagnosis harder than it would seem. It covers a lot of issues you have had and might have. Nothing is stand-out tho?
http://neuromuscular.wustl.edu/alfindex.htm
It IS a very BIG index! But a good one.
Look up all the details about the different MG and CIDP variants...their diagnostic distinctions and differences...they are often subtle.

As for treatments for CIDP? Other than prednisone [which was nixed from the start for me] the alternative treatments are invasive, extensive and VERY costly - it helps if you have super insurance!
I've been on IVIG for five years with only one bad infusion incident and it's kept me able to move and function...tho to a far lesser degree than before! At least I'm not in a wheelchair! Also my muscle functions have not been too badly affected nor, it seems, have my autonomic functions [WHEW!] .

As for tingles? Keep telling yourself that any feeling is a GOOD THING! Why? the alternatives aren't acceptable! EVER. It's amazing how our thinking can help us cope with things and often aid our bodies in healing. I get random sharp ZAPS [for want of any better word] in affected parts and I just tell myself-it's a new nerve! It wants to know what to do and is announcing itself that 'I'm here-now what?'. These usually will take my breath away for a minute or three and then go away. They happen about 3-10 times a day - I welcome them, tho they are startling.
ANY FEELING is better than no feeling at all! Just keep telling yourself that.
Hope always - j 's

[echoes long ago]

I agree feeling is definitely better than none. I cringe when i read on here about "only having numbness" or hoping in the future to have numbness to limit pain. The kicker is you can have both, which i can attest to. Numbness brings its own problems, of balance, gait, injury and feeling parts of you are dead.

[Brian]

It is very hard to say, I know when I was going through the regeneration process, I had bouts of worsening of symptoms followed by slightly less severity of symptoms, the electric type jabbings were first to go then the tingling followed, the burning next then the numbness was the very last and the slowest out of them all, the whole lot is a very slow process though, time will tell.

good luck
Brian

[ras1256]

J -
I wish I wasn't at a point where so much of what you're saying is familiar.

I'm going to send you a private message, I hope you don't mind, but I've read some of your posts and it seems you are possibly closest to my situation. I want to pick your brain , ok?

I have looked at the site you listed several times, but still have many, many questions and I'm too impatient to wait for my neuro to catch up with me!

Talk to you there - thanks for the great response.

Originally Posted by dahlek

Thing is, less is known about nerve healing than there is about nerve damage/death! Snails and mice seem to be the current 'research animals'.

Nerve death and regrowth pains are very similar. In my own experiences [full-out CIDP] the onset pain was fairly consistent peripherally...and excruciating. As it progressed, it was a humm or buzz that worked its way up my limbs to points well, unmentionable. Pain killers really don't get to cut the pain all these minute nerves are experienceing when dying or being stripped of protective cover [meyelin sheath].

Treatments are limited: Plasmapherises [sort of like a dialysis for the blood]; steroids [stopping immune system attacks]; IVIG [infusions of immune globulin - a portion of donated blood that outnumbers the IG's attacking your nerves and demeyelinating them]; and for some, pain killers work to ease the overall pain. That is IT!

As for absolute diagnosis? Well, based on what I've read in your postings, you have many issues which can overlap or contribute to an acquired immune system response [which is what CIDP is]. Just take a look at this index for an overview of how many things can happen... they all make diagnosis harder than it would seem. It covers a lot of issues you have had and might have. Nothing is stand-out tho?
http://neuromuscular.wustl.edu/alfindex.htm
It IS a very BIG index! But a good one.
Look up all the details about the different MG and CIDP variants...their diagnostic distinctions and differences...they are often subtle.

As for treatments for CIDP? Other than prednisone [which was nixed from the start for me] the alternative treatments are invasive, extensive and VERY costly - it helps if you have super insurance!
I've been on IVIG for five years with only one bad infusion incident and it's kept me able to move and function...tho to a far lesser degree than before! At least I'm not in a wheelchair! Also my muscle functions have not been too badly affected nor, it seems, have my autonomic functions [WHEW!] .

As for tingles? Keep telling yourself that any feeling is a GOOD THING! Why? the alternatives aren't acceptable! EVER. It's amazing how our thinking can help us cope with things and often aid our bodies in healing. I get random sharp ZAPS [for want of any better word] in affected parts and I just tell myself-it's a new nerve! It wants to know what to do and is announcing itself that 'I'm here-now what?'. These usually will take my breath away for a minute or three and then go away. They happen about 3-10 times a day - I welcome them, tho they are startling.
ANY FEELING is better than no feeling at all! Just keep telling yourself that.
Hope always - j 's