what these new, worsening problems are...
since I'm not Regular' poster here, some details (hope I can stay ontrack-- I lost a longer post that may've tried to address too much , but now struggling to recall & write...
like many here, my med Hx complex w/ other issues, conditions.

most of my problems began over 10 yrs ago when i was hit by car;another head injury (TBI) last year generated more... most may not be relevant to this thread so despite my TBI affects (esp Cogntive dysfuncctions) try to stay focuesed

CIDP-sensory variant was DX few years ago. Prior to that, referred to idiopathic sensory neuropathys.
other DX have been suspected (autoimmunes, MS, etc) but tests ruled out; others added some retracted (RSD) -to much to get into now

back to the issue...
past few weeks increasing severe pain, esp. knees. while pain is not new esp in these trauma sites-the intensity & manifestation is...
pain is constant w/ erractic hits of excrutiating pain-feels like being whacked w/ a board or big nails, spikes being hammered, as tho something external is stricking me. Pain is worse w/ activity, movement but does occur when still.
wonder if this is CIDP worsening, or an arthritic or ortho problem. Burning -in legs & other areas, seems to point to neuro problems.

WEAKness is another disturbing occurance. FAtigue has long been problem but this is very different. I feel like my legs, esp knees are going to give out, and often do. I"ve been falling frequently. when do walk like Gumby & each step is excrutiating.
weakness in arms, hands--dropping things , unable to pick up, etc.-- is also getting worse.

Spasms and twitches, jerks worse & frequent--in extremities and ramdon body areas. Not painful but when occur while trying to sleep, jolt me awake, w/ that startled feeling, response.
Tremors - mostly extremities esp legs & when trying to walk. but also in arms/hands.

there's more (better to start another thread or wait to see response here)

thanks again to DAHLEK & others who've shared info/Links about PN and esp CIDP .--I need to learn all can --just reading can be challenge as are other mental & cognitive functions that may be caused by TBI s or chronic intractable pain. whatever reason, hope to find ways to get thru all this...

wishing ALL the BEST

Are you seeing a neuro now? Do you trust that neuro in any way? If so, I'd call and try to see them asap. IF not, check out other area neuros and make an appt. [this usually takes 4-6 weeks for new patients, so don't delay]
If it were me, I'd say it's time for a new round of tests. Some CIDP 'variants' can be like [but not like MS] in that there can be relapses. I'd want my mind and body to know that this is something not to worry about...or whether to worry is all.
It could be nothing or something....but doing nothing and then getting worse will be harder to live with - besides it's hard to kick yourself when you get really sick! I know!
IF it is a relapse steroids and other treatments can be tried to keep things in check. I hope this issue recedes as you've got more than enough to deal with.
Keep us updated, please! 's - j

thanks for reply. YES, I trust & like my Neuro. He seems to understand & takes time to listen & explain. We have good rapport & relationship established over 6 yrs.
biggest issue is distance -very long drive now to see him since he moved but to me worth it, after consult w/ several other Neuro's --most were very frustrating disappoint appts after long wait. in this area it can take several months IF these DRs are even taking new patients. Even getting in w/ my neuro now takes weeks. I don't like going to new DRs -neuros who want to start from scratch, who are un-diagnosing me on first exam, or prescribe meds, treatmts tried unsuccessfully long ago....
for now I'm comfortable w/ my neuro DR B.--who knows what's been done, tried and usually has something to suggest or try. He's been my pain mgt.
He hasn't given up on me yet, & vice versa.

I do have a scheduled f/u appt w/ him next week -- RE: BOTOX treatmts.-- I had 1st treatmt 2 mths ago for debilitaing headaches/pain.--another problem & long story...
and also IVIG he's been ordering for years, but got denied; resumed 2 mths ago after 2 yr fight w/ insurance .{thanks to you & others who referred me to IVLiving advocates.)
wondering if IG or Botox may be factors??

Do intend to address these , pain & other problems then , see if he thinks its CIDP or something else. and what to do...
I will ask about tests.

just have to get thru next week.... I went back to bed for most of day--seemed better than trying to move about in pain & risk more falls.

thanks again....

could you elaborate on this?? as I said, I'm trying to understand, learn about CIPD variants. but seems most info is rather technical, medicalese--not the easiest reading for my dysfunctional brain.

When a big "flare" or episode like this occurs (with so much more pain & dysfunction) i do get worried-- scared that it may not be a flare or episode but sign that more, worse is eminent ....
perhaps if I knew more about my conditions I'd have a better understanding of what can occur, how to deal, etc.
I also wonder about other conditions that can mimic as well as others that may be emerge--
try to figure out what can, should i do??

Perhaps the only thing now is to wait till do see DR to see what he thinks & suggests. and to have more tests ....
anything I can gather before that may be relevant to discuss w/ DR would be good. All I can present now are my SX.


again, thanks,for your caring responses.... and all you give ....

Hi. Who did these botox treatments? I have heard a lot of mixed on this so wonder if you are having any issues from the past ones?Have you been to a pain clinic and or anastesologist?Hang in there and I agree the wait for docs is unreal. That is why if I am not sure if I am going to go to a certain doc I make the apt while I am thinking

Unversity of St. Louis 'neuromuscular website....
Scroll down to the Chronic Inflammatory Demeyelinating Neuropathy or CIDP and see all the variants! There are many kinds and it seems a new variant is being 'added' about once every 6 months....
http://neuromuscular.wustl.edu/alfindex.htm
Aside from LizaJane's worksheets, there is also a diagnostic testing sheet somewhere on this website that corresponds w/Liza's regarding the multitude of tests that COULD be done...not necessarily what IS done?
As for flare-ups? Yes they can be scary as heck! No question about it! At times you just are afraid to go to bed because you might not be able to get out of bed the next morning--at all [at least for me]. What IS complicating things for you is the issues resulting from your TBI's and other things...
As for the muscle 'fasculations'? Use the search feature at the top of the page and key in 'fasculations'...There's been lots of discussion here and on other forums at NT about them. Most of us deal with them thru supplements such as calcium/vitD/magnesium or potassium[bananas] and or quinine to help deal with it...Oh! forgot the Vit B-12!
Flares are only as bad as you allow them to be? By that, I mean that stressing yourself about this all CAN and does make it worse. Many here have addressed this issue far better than I can, have or ever could. I cope by focussing on learning as much as I can about what the 'processes' of the neuropathy I have are and how it does overlap or coincide with my other medical issues...sort it out and try and UNDERSTAND that, and then deal with it as best I can. You MUST learn all the medicalese as a matter of self-defense! Just don't rush it? It's like learning a new language, you just have to get the 'gist' of it all to deal with it and use it.
As for PN mimics? Well, B-12 deficiency and many other vitamin deficiencies, thyroid issues [hypo and hyper], and a giant slew of other spinal toxic and immune issues....The list is so very long! That is why it so often takes years to get any PN properly diagnosed. Sad but true fact of life.
Also do be pragmatic about this all? In that getting a 'name' put to what your problem[s] are doesn't necessarily mean that any really good treatments may be available...That is the nature of this set of beasts.
I hope this all helps and 's? While the latter doesn't change things, know that you aren't alone in your frustrations. - j

Well your having a bad time,and I'm glad you like your Neuro,that is rare
for many,I like mine as well. The Botox may be your problem was that
the first time you had it?? Did your Neuro give it to you,you coud call
him or her,that headacke must of really hurt,I'm sorry.

Now since I'm lucky to go where Darlek just recommended please read
it all ,make your list for your Neuro,and put it in front of him,if you have
someone to go with good,it helps.If not ask him to write the answers
to your questions and Pono please kept in touch.. Hugs to you and all
Sue