[pono]

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

[dahlek]

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

[pono]

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....

[pono]

Originally Posted by dahlek

Some CIDP 'variants' can be like [but not like MS] in that there can be relapses.
IF it is a relapse steroids and other treatments can be tried to keep things in check.

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 ....

[daniella]

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

[dahlek]

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

[shiney sue]

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

[pono]

THANKS --for Responses, support, info, etc. much apprecited & needed.
Questions presented more than I can address now..
will try soon.

Now, other FLARES -- other problems hit--hitting past days-- "drop attacks" -- I suddently collapse, like a rag doll, unable to move or speak but can hear. Lasts usually few minutes but I've been down for 1/2hr. after, always get excrutiating head pains--and other weird feelings (may cry, be upset, irritated, angry.) sometimes these headaches become incapacitating.
Seizures were suspected but ruled out .
Began after accident when I was hit by car 11 yrs ago; occur erratically, w/out warning, signs. and often w/ injurys..


Many of these "drop attacks' in past days; I fell on an electric space heater yesterday, broke it & whacked head... other falls before may be reason for the aching bodywide & increased headaches. and mre....
I feel so weak & tired. seems safest to stay in bed now
a friend is here now helping care for my terminally ill father. --another Long story & issue. I'm his primary Carer....
so much going on...mmore than I know how to contend with....

[cyclelops]

I am going to assume by now you spoke with your neuro concerning these drop attacks.

The vagus nerve COULD be implicated. Your case is extremely complex and in no way can any one suggest a solid etiology for what is going on with you on the forum and in fact, it will take a good number of really smart, motivated specialists working together to solve this.

The reason I bring up the Vagus nerve, is you had a car accident and the Vagus nerve could have been injured. It is also called the tenth cranial nerve. It would not be the first thing the docs thought of, unless, for some reason, a real 'light bulb' symptom or group of symptoms went off in their heads. It just went off in mine, so, I think you need to consult with your doctors immediately regarding these drop attacks. (I think zebras when I hear hoof beats, because by the time a person is on this forum every breed of horse is usually ruled out.) This would be a very rare possibility, but without knowing your other symptoms, other than some neuro stuff, that has apparently been very problematic, I think it is worth your researching it on your own and if it applies, presenting your doc with this info.

The vagus nerve controls heart rate, can bring on 'drop episodes' due to a fall in heart rate and no compensatory rise in blood pressure. It innervates sensorially the pharynx and larynx, as well as a portion of the meninges of the brain (headache) among a huge number of other organs. Google vagus nerve for your own information. A drop attack due to a vagal event of this nature in an individual with a history of potential trauma to this nerve, is not a simple faint, and can in rare cases result in asystole. I assume you have seen a cardiologist? I assume you had a tilt table? A tilt with isoproterenol provocation? Stress test?

It would not show up as a seizure. Altho the nerve originates in the brain, it meanders all over the body. It could show up as a combination of a great number of what seem to be totally unrelated symptoms, from inability to swallow, to graying out, to bradycardia, to outer ear pain. It is an incredibly long and wandering nerve (vagus=vagrant). If you saw your doc and complained of all those symptoms you will likely leave with an antipsychotic, because seldom are all the vagal symptoms correlated...a lot of it has to do with our fragmented approach to patient care. I seldom use the wikipedia for a reference, but this time, it is a good place to familiarize yourself with the vagus nerve, so start here. It has a clear layperson's explanation and decent graphics.

http://en.wikipedia.org/wiki/Vagus_nerve

Drop episodes such as you describe are not a minor matter, and I would pursue this if when you google the vagus nerve, any of these symptoms ring a bell. Regardless contact your doc immediately. It may or may not be the vagus nerve, but, a drop attack is not a minor matter.

[LizaJane]

This worries me. It's something people get with autonomic neuropathy--SEVERE autonomic neuropathy, when their nerve (usually vagus nerve) just stop giving signals to blood vessels to keep blood pressure up, and heart to be pumping at a good clip. So your brain doesn't get enough blood and you pass out. But it's not good for the heart either, and sometimes this kind of problem is associated with other organ problems. Does your neuro know about this?????

Please call you neuro and tell him; if he's as good as you say, I'm sure he'll see you earlier than the next scheduled appointment, or at least talk with you onthe phone. I'm assuming these drop attacks are new, and he doesn't know about them.

Clearly this is a flare, but I don't know of what; I've not heard of CIDP causing such autonomic neuropathy, always thought severe autonomic was usually inherited.

But if you're having a flare of CIDP, perhaps you would get more or earlier IVIG.

Do call him.

Also, if you've been diagnosed with CIDP, I'd bet you've had a spinal tap, and that you had no oligoclonal bands or high IgG synthesis, the abnormalities found in MS. Is that correct? Though drop attacks don't sound like an MS sort of thing.

Please call your doctor.