Sensory CIDP

[FONT=”Arial”][I]Elmo, I, too, have had sensory CIDP for the most part. Feet and legs up to knees primarily … along with the zaps in thumbs/hands from time to time. All has been helped enormously by gabapentin. I’d guess my problem is ‘slowly progressing’ as opposed to relapse/remitting. You note weakness in arms. That’s something that is bothering me as well now. Part of the ‘slowly progressing’, I suppose.

I have my next neuro appointment in 4 months. It’ll be interesting to hear her opinions/suggestions. I have serious doubts I’ll be sent to the “guru” in Houston again unless something drastic happens.

I have no hints to offer you. It would seem that we are at about the same level in this disease.

But if we both are in the ‘slowly progressing’ category, I’m pretty grateful for that.

I’m editing, Elmo … you posted: I’m struggling with “how much information” is good information, and “at what point do I appear like an over-read hypochondriac”? How do I stay “forceful” but “respectful”? We go into these appointments so anticipative of help and answers, and, it seems, walk away feeling dejected and under-appreciated. Is that “US”, or “THEM”? Probably a little of both, I’d suspect.

And that’s the quandry we all face. For me, I have a short list of questions and I approach it that way … saying “I have a few questions” … ‘is this a possibility’ ‘what do you think?’ … you get the idea. Long lists broken into short lists for subsequent doc visits.

Rocky[/I][/FONT]

Elmo,

I went to my first neurology appointment assuming he was going to be an excellent doctor and want as much information as possible. I prepared a very detailed health history all the way back to childhood mishaps. I also provided a separate list of family illnesses. And finally I had a list of specific physical complaints. All nicely typed up and ready to go in my medical file.

I don’t know if my neurologist actually used my information when he diagnosed me. But his polite and interested attitude made me like and trust him immediately.

In following appointments I continued to take typed lists of questions and concerns to be added to my file. My neurologist would consider a complaint such as the inability to open the soda bottle and then quantify that problem using the appropriate medical exam.

I know I am extremely lucky that my family doctor was able to refer me to this wonderful specialist. However, I think all doctors should be comfortable with a well informed, organized patient.

Flossie

Now it’s ‘polyneuropathy’ of the autoimmune nature. Sensory at first attack, w/a dollop of full muscle and limb weakness. Three rounds of PT and a lot of hard work later I was mobile, but the ilk still progressed. Still harder for me to bounce back after any set-backs tho. I have begun to realize that I no longer bounce! I land with a hardy THUMP! and I don’t weigh that much, either.
Defining ‘sensory deficits’ Isn’t easy. Think of an electrical cord that’s got it’s insulation off due to a pet chewing on it or wear…wires are exposed and send out ‘shorts’. Your immune system is the ‘chewer’. The shorts are short circuits of your nerves. And most here know what THAT feels like.
Muscular deficits – Not being able to move and use muscles due to the pain leads to loss of muscle tone. Then you start to walk differently due to that pain and can deteriorate further. More PT needed -IF you can find not just a good, but a GREAT therapist….one who knows where and when not to ‘overdo or overtire’.
Next those ‘fasculations’…Try Calcium [B]CITRATE[/B] with magnesium and vitamin D. The latter two help asorb the first better and many with CIDP have asorbtion issues.. The pain meds also cause asorbtion issues of Calcium from foods so you have to supplement and often a lot. A metabolic Blood Panel can and should be done and will help you there.
A good reference about the x-rays&spinal issues is the following:
url [url]http://www.aafp.org/afp/980215ap/poncelet.html[/url] url shows how if this, then that the whole process is and how squirrelley it can be.
I was lucky taking just less than a year from onset to diagnosis and MANY docs in-between. I am hoping with my all that you too get some answers along the way! The tests are long, and arduous, but if they get you in time? WORTH IT! Let us know how it goes!

Hi Elmo,
About a year ago I was diagnosed with CIDP with anti-mag. My Neuro said
I definately had sensory involvemnt with it. I had no idea what she was talking about at the time. All I know is I had numbness in both legs and arms
that was rapidly progressing, terrible balance problems and pain. Lot’s and lots of pain and I was getting weaker in my strenght. I did so much research
on CIDP and found this forum. What a lifesaver everyone had been, thanks to all of you here. I am getting IVIG treatments 1x mth and have been for around 8 mths now. Have they helped? From what I understand they are not a cure for this disease but they have helped to some extent with pain. Some day’s I feel better than others for which I am grateful for. Other days
are not so good…but I’m still grateful. I do feel your pain though. I have my
doctors e-mail and about every 2-3 mths. I send her an update on any new
symptoms or problems I have. At first I thought the treatments were going to cure me or make me back to normal. I don’t know if that will ever happen but I do believe they will help in slowing down the progression and even if that is all I get out of them, then I’ll be happy. Yes, the pain sucks at times.
Yes, I have to ask my husband to unscrew the caps on bottles. Yes, I need help getting up sometimes and yes, I got in the shower once and thought we
had run out of hot water just as you did, but I got out of bed today and I was able to walk and talk and put on my clothes and just for today, I am grateful. Take care and keep us posted on how your visit goes.

OK here goes and I apologize to you if I get too wordy… I go for months without making comments then somebody gets a whole lot dumped on them at once…

I have relapsing remitting sensory and motor CIDP, basically under control with IVIg though I’m switching to Subcutaneous Ig next weekend due to the side effects. One of the first things I noticed when things started going downhill was that shower thing you mentioned. Hot water did not feel hot though it was patchy at first on my lower legs… then later when the nerves were more damaged hot water actually felt cold. Its a very strange feeling. Most of the sensory stuff started in my legs but made it’s way up to my arms and face as well. At my worst I could only feel a small patch of skin on my forehead and could only move my left arm slightly, my left leg slightly and my diaphragm slightly – enough to breathe. Now that I am much better I am left with many sensory problems and some motor problems.

I think I understand a little of what you are going through. When I first landed in the ICU the doctors there were steadfast in that GBS/CIDP did not cause facial numbness and paralysis therefore it must be something else. Many moons, three neurologists and thousands of tests later I landed at Hopkins with a doctor who was familiar with this rare aspect of CIDP, who properly diagnosed and treated me, and now I’m well under control with few major relapses. It is not common though Kazza and I and others have enjoyed the sensory parade for years now.

There are many uncomfortable things about sensory damage which I’m sure you have discovered on your own. But here are a couple of flip side benefits I’ve found… my hearing is incredibly acute now, much better than my dogs, so listening to complex music is a treat now; wool, silk and cashmere don’t make me itch anymore; it doesn’t hurt to get stuck 6 times for IVIg treatment when my veins run and hide; it doesn’t hurt when I trip and fall or run into things and bruise myself (still looks ugly tho); my color vision is kind of random and interesting – some days colors are very bright, other days they are very muted; my sense of smell is acute (therefore my fridge is never has dead salad in there anymore); my sense of taste is basically gone so I don’t care what I eat, not to mention it’s difficult to chew so I’m easy to feed. It’s not all bad… some things are kind of interesting – especially the acuity of my hearing and randomness of my color vision. I can spend days doodling with my drawing pad listening to music…

I am fortunate that I am an introverted person anyway and don’t need to spend a lot of time around crowds. As I’m sure you have discovered when you have sensory damage it’s quite easy to get overstimulated and when that happens my body starts shutting down. Usually my cranial nerves shut down first as they are getting the most work trying to keep up visually, trying to keep up listening, swiveling my head around trying to pinpoint who is speaking, filtering out background noise etc. Its a lot more work than we realize until we can’t do it anymore. My skin numbness varies depending on what I am wearing, what I am doing and what my environment is like. I do not have much of my skin exposed as random breezes can set off creeping numbness, so can shaving but I do it anyway cuz I can’t stand hairy legs (TMI!!!) as they tend to make the numbness worse too – all that rubbing back and forth on the hairs makes my sensory nerves go nuts. I try to keep my skin fairly moisturized as that extra layer of oil provides a little protection for my sensory nerves. (BTW the best I have found for me is Oil of Olay In Shower Body Lotion – smells inoffensive, non-flowery and rinses off in the shower so you aren’t too slimy when you get out… not to mention doesn’t junk up your shower so you have to clean it every time you shower).

You mentioned problems with the brachial plexus – while I have had other disc problems for 20+ years the only trouble I’ve had with my back since getting CIDP is that area. It seems very sensitive to my overall weakness and I have to be very careful about strengthening my arms and upper back or I end up setting off a three-week spasm that leaves me unable to feed myself except with a straw. I went through that shortly before Christmas (again) and it took me nearly 4 weeks before I could use my arms without them hurting again. Now I do DAILY exercises, very low level, mostly mobility type exercises and stretching. If I skip days I start getting cramps, stiffness and pinched nerves in my upper back – right where your shoulder blades meet. Its horrible, worse pain than two slipped disks in my lower back… I’d rather have a root canal without anesthesia than go through that again. Before I had CIDP I had four slipped disks – two in the lower back, one in my neck and one there. This is the only one that has given me problems since then – however I am pretty convinced it’s a mechanical issue, rather than my disease targeting that specific area if that makes sense… spinal MRIs show only the same warped back I’ve always had – no additional inflammation or demyelination has ever been visible or evident.

Finally there are some things you can do to re-teach your sensory nerves I learned from my physical therapist. I guess it’s just like any muscle/nerve combination in that it takes practice to get them working together again after there has been damage. Anyway she suggests gathering an assortment of textured items such as a hairbrush, paintbrush, sandpaper, silk, warm oil, cold water etc. just whatever you have on hand that has a variety of textures and temperatures. Then you just do a little hand-mind combination work – think about what a hairbrush feels like as you GENTLY touch your skin with it (don’t go whacking around on your damaged nerves). Alternate hot/cold, rough/smooth and build up the time you can do this each day. At first I’d start getting jumpy after 30 seconds with my skin crawling and zipping from barely touching it, six months later I could feel the razor on my skin when I was shaving and now I get no zings when shaving and can actually stand for someone to pat me on the arm or brush my hair without wanting to jump thru the ceiling.

Speaking of numb… my fingers are there now with all this typing 😀 If I think of anything else I’ll write more later, feel free to ask questions too.

Julie

Presado Elmo

Fiu diagnosed with sensory CIDP (autoimmune) and did treatment with Imunoglublina now also been shown to glucose intolerance, oo fatigue and a burning sensation is generalisada and any improvement is slow and not very long, but when it is fairly regular applications of immuno even though no question of evidence, the bad, she acts well

It was the best I have used.

Elmo,

CIDP for me has initially been sensory only, then worked towards muscle fatigue. I have a period of “plateau”, but then started back working part-time and have had relapses in symptoms and new symptom areas.

I am a little tired now, but would be happy to talk about either my progression, symptoms, or triggers. Give me a day or so to get some energy, and I’ll get back to you.

hi

Can someone please tell me what are the diagnostic tests are for SENSORY CIDP?

For example, do nerve conduction tests show demyelination eg slow nerve velocities ? i think they are called F waves.

Is it the case that sensory CIDP is a demyelinating disease and its just that it doesnt affect the motor function?

I dont have demyelination but sensory symptoms.

I am confused about this.

[I]Elmo, your quote couldn’t be more apt. Churchill did have a wonderful way with words, a super and superior way of getting a point across.[/I]

[COLOR=”Navy”]”Churchill described his “melancholy” or depression as a big, black dog that followed him through his life. I remember reading a quote, where, when feeling his worst, he would state, “The black dog is howling…”. What a great mental image.”[/COLOR]

[COLOR=”DarkSlateGray”][I]’The black dog is howling’ … this I will definitely remember. Thanks, Elmo.[/I][/COLOR]

Hi,
I have absent F waves on my nerve conduction tests (as well as absent sensory responses). I have had slowed nerve responses too (motor) but the speed always vary between my nerve conductions tests (I’ve had a few) – and they don’t seem to show up as bad as my sensory nerves – so that must be why I have a diagnosis of Sensory CIDP. So that (abnormal NCV tests) combined with absent reflexes, positive Rhomberg’s test, ataxic gait, debilitating weakness and other neurological exams all contributed to my diagnosis. My cranial nerves are affected too.
In the beginning (several years ago) I had actual ‘attacks’ which tooks ages to get over (I had no diagnosis then – so no treatment). Now it seems that I’ll have an exacerbation of the original symptoms (from the original attacks) if I overdo things or have a virus (except with things like working out water temperature and my lack of taste for salty, sour foods – I always have probs with those now).

Kazza

ukguy,

I don’t think a Dr would make this a “clinical” call. It seems easy for us CIDPers to differentiate. If the symptoms are predominately numbness or predominately motor, you might classify yourself sensory or motor. I don’t think that the Dr’s will treat us any different.

As I have watched and listened over the years here on the forum, CIDPers seem to have a better chance of regaining motor function first and sensory functions later. If there is any permanent damage, it seems to be sensory.

Just my observation, nothing medical.

thanks dick

Bad news about sensory being the more lasting damage. My neuro doesnt seem to want to diagnose my condition as anything