AnonymousFebruary 10, 2010 at 9:54 am
I wanted to further a discussion about Sensory CIDP that kind of started on another thread, but didn’t want to “hijack” that thread.
Kazza stated that she had primarily Sensory CIDP, and explained something about the ganglions in her dorsal nerve root. Kazza…THANK YOU! I’m trying to prepare for a neurologist appointment on the 25th, and am gathering as much information as possible to take with me. I’m trying to NOT get my hopes up for this appointment, as others have not gone well, but that’s a battle.
I have become convinced that Upper Limb CIDP is the number one possibility for my illness. Notice that I said “possibility”…I’m not going to go to my appointment and announce that I’ve diagnosed myself, and I AM open to other possibilities, but all the symptoms, test results, etc., sure seem to point that direction.
My EMG’s have all shown primarily sensory involvement, to this point. In my legs, it is completely sensory. In my arms, which are the area of primary involvement, it is mostly sensory, with some motor involvement.
Since I started coming to this site about 4 months ago, my symptoms have changed somewhat, becoming, in my mind, more defined. They are:
[B][I]Loss of Strength[/I][/B]: I can no longer lift things that used to be simple. I posted once before about how I had to get my wife to help me lift a half-sheet of sheetrock which only weighs twenty pounds! I’ve had to give up playing piano for my church; I’ve played since I was 6 years old, and it is my greatest source of relaxation and stress relief. I’ve had to give up golf, as it takes a week to recover from playing one round.
[B][I]Fatigue[/I][/B]: This has “waxed and wained” over the past few months. I will feel like I’m completely drained for several days, then somewhat recover, then feel drained again. Still working on determining if this is a routine that I’m feeding somehow….taking it easy while I don’t feel well, then over-doing it when I do…that sort of thing. It’s exasperating, though, to feel great one day, able to do many things, then the next day be slammed back to the floor.
[B][I]Tremors[/I][/B]: Intention tremors in my arms have become much worse, and are pretty much constant now.
[B][I]Sensory Deficits[/I][/B]: Don’t know what else to call this? Nerves are not picking up signals as they should. The other night (and please tell me if this is TMI…too much information) I was getting in the tub, as a hot bath has become a source of comfort to me lately, even though it sometimes exacerbates certain symptoms. I was standing in the tub, spraying the water on my legs, waiting for it to get warm before I “plugged” the tub. I kept thinking, “Are we out of hot water…is there something wrong with the water heater?…”. I raised the sprayer and sprayed the water on my upper backside, and IT WAS SCORCHING HOT! My lower legs and feet, however, only detected “luke-warm” water. I have to be careful with this in the future; would hate to end up at the doctor’s office with burns from stupidity. I’ve also noticed that this winter I’m especially vulnerable to the cold…if I get cold, it takes forever to get warm again! It also causes my arms and feet to go numb, and they take a couple of hours to regain what feeling they had before that. I have to wear long-underwear under my suit when I go to work, because I’m always cold at work. It’s ridiculous!
One source of confusion for my doctors to this point has been some serious pain I’ve had running from my spine down both arms. I had a damaged C6-C7 nerve a couple of years ago, and had a discectomy w/hardware (disc removal and fusion), but the pain never abated. It’s gotten worse, instead of better. Last week, I had another MRI and it showed that everything in my CSpine is “fine”. BUT, I found several papers (including one in this site’s archives) that clearly state that often in Upper Limb or “Regional” CIDP, one source of problem is the Brachial Plexus…the bundle of nerves that run down your arms, shoulders, etc.!!! THAT could explain the source of the pain I’m being treated for!
Kazza’s post about other sensory causes will help as well.
Sorry this is so long; it’s sort of a vent, but also a plea for help. As I said, I’m preparing for an appointment with a new neuro on the 25th. If you have Sensory CIDP, or HAD it and it evolved into full-blown CIDP, and have things to offer, please post them. I’ll read through all, and will be very appreciative. Suggestions about how to handle this next appointment will also be appreciated, as I apparently didn’t handle the first two properly! 😮
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.
Finally, thank you all for all your support and posts over the past few months. As I said, I’ve been a member of other boards, on other subjects, in the past. I know it can get to be a pain in the @ss sometimes to keep answering the same basic questions, over and over, as newbies arrive. I also know that there have been some disagreements here, of late. That, too, is not unique to this board.
[B]Speaking for myself…I appreciate whatever ANYONE posts, and always will. I know that I have to filter certain things, and be willing to hear opinions that don’t always agree with mine. But, that is one of the reasons I come to boards like this…if all I wanted to hear was my opinion, all I’d need is a tape recorder! While I’m a “newbie” still (even though I’m listed as “Senior Member” :rolleyes: ), I’d like to offer one suggestion: If something offends you or makes you angry, please try and wait a day until you respond!? Give yourself some time to calm down, think about things rationally, and then make your point. That advice comes from a lot of hard-earned experience on a marriage board.[/B]
Again, sorry to be so wordy, but thanks to all for all your help!
AnonymousFebruary 10, 2010 at 11:18 am
[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.
February 10, 2010 at 5:09 pm
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.
AnonymousFebruary 10, 2010 at 8:43 pm
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!
AnonymousFebruary 10, 2010 at 10:11 pm
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.
AnonymousFebruary 10, 2010 at 10:33 pm
Thank you very much for your responses; I truly appreciate them, and will consider all your suggestions.
As I said before, my goal at this point isn’t a cure, but, simply, a diagnosis. So much seems to hinge on that. Especially as far as work is concerned; my employer seems to be getting a little less tolerant with each missed day. I feel I’ve been pretty considerate so far, having only missed 1-2 days per month since this all started, even though there were a LOT more days when I feel it would have been better to stay home and rest. I’ve even considered looking for a less stressful job, but told my wife that I would feel guilty even applying somewhere, without knowing what lay ahead.
I’ll keep you informed as to my progress, or lack thereof.
AnonymousFebruary 12, 2010 at 5:01 am
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.
AnonymousFebruary 12, 2010 at 11:42 am
Thanks, Julie, for all that. I’m humbled that you took the time, and abuse :p , to write all that to me!
I like your positive attitude about “the flip side” of symptoms…although, I have to admit, some days it’s pretty hard to see a “good side”. 😮
It sounds like our symptoms are very similar, although mine aren’t as bad as yours were originally. I’ve not completely lost anything yet; my goal is to “NOT” get to that point before someone decides to take all of this seriously. It infuriates me when a doctor says, “Well, we have to wait until it gets worse, so we can be sure…” They wouldn’t say that if THEY had cancer or an infection…they’d want it taken care of right away!! So why the double standard??
I have to consider your statements about “sensory overload”. I’ve kind of wondered about that; it seems like just a hectic schedule or busy day can send things into overload. I’m still learning and getting used to all this. I’m also still fighting my “male ego” and learning how to make myself rest when needed. I HATE that, though! This past week, my wife was painting our laundry room, because, honestly, I couldn’t. There was no way. But it drove me nuts…I kept “should”-ing on myself. “I should be in there helping”…”I should be doing that”…blah, blah, blah. I think a counselor could help me with that.
Ahhh…Brachial Plexus pain. You explained it very well; I actually printed out your post for my wife. Mine, when I’m not taking pain meds, is horrible. And that’s NOT an exaggeration. I’ve told many doctors that it feels like someone hit me, as hard as they could, right between my shoulder blades with a baseball bat….yesterday. You know what I mean? Not the “instant” screaming pain, but a terrible, deep, aching pain that runs all the way through my shoulders, down my arms, and into my hands. On their lovely “1-10” scale, I usually rate my BP pain between a 7 and an 8. Without meds, I cannot focus on anything…my mind is constantly distracted by the pain.
What you said about lotions was interesting, too. This winter is my first with these symptoms, and I’ve wondered if my dryness had anything to do with it. My hands have always been dry in the winter, and I’ve never been a big “lotion” guy, but I’ve had to make serious changes this year. Early on, my hands got SO red and painful, and then they started to bleed. Just cracking and bleeding…I hadn’t scraped them or bumped them. It also effected my face…basically any exposed skin. I now use lotion several times a day, have STOPPED using AntiBacterial Gels (they’re almost all alcohol and made things worse), and even bought a Parafin Bath for my hands. Man, that feels good! My mom used to have one, because of her RA, and I used it once; when this all started I checked into them…some are very inexpensive.
Again, I appreciate all you have to offer, and look forward to talking to you again. It sounds like you’ve been down the same path I’m starting. Thanks again for your help.
To those that PM’d me…please be patient…I want to respond, but it’s been a hard week between symptoms and a difficult boss. 😡 I’ll try and respond this weekend!
Best to All,
AnonymousFebruary 12, 2010 at 7:10 pm
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.
AnonymousFebruary 13, 2010 at 8:32 pm
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.
AnonymousFebruary 14, 2010 at 5:57 am
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.
AnonymousFebruary 14, 2010 at 2:11 pm
I can only speak to “my” test results, but my preliminary diagnosis was made via EMG, and also blood tests to rule out other possibilities.
The EMG on my legs showed no axonal involvement, only sensory. I would have to go back and review my EMG on my arms, but I believe it showed mostly sensory, with “some” motor involvement.
Both EMG’s showed evidence of demyelination, prolonged f-waves, and reduced velocities. During my leg EMG, he also tested to confirm that it was only from the knees down; he said that if anything presented in the upper legs, a question was raised about the possibility of a compressed nerve, herniated disc, etc., in the lumbar spine. Mine was only from the knees down. After my last EMG, the doctor that performed those tests actually put on the test results: “Testing indicates Chronic Demyelinating Polyneuropathy”. Only missing one word…”Inflammatory”. Don’t know if that’s a big deal or not.
I seem to have hit a wall. The last several days I’ve felt much like I did when this all started…extremely fatigued, pain has increased drastically, my arms feel like dead weights, etc. I am worried that I may be at the point where I need to make a decision about pursuing a short-term disability, at least until I see this next neurologist and see what her thoughts are. It is a constant battle to go to work, only to find that it is draining my energy and spirits. I wonder about how effective I am, considering my symptoms and lack of strength. I also worry, though, about starting down that path and finding that it’s non-reversable. This constant worrying/thinking about work, and trying to decide what would be best for “me” is taking a toll. I want to keep working as long as I can, for many reasons, but don’t want to ignore what I think my body is telling me. The last several days have been the worst since my initial “onset”, and honestly, seem worse than the initial onset. Which raises a question:
If you have the recurring/remittant form of CIDP, do symptoms/flares typically tend to get worse as they recur? In other words, is it worse every time it flares? Is it a progressive sort of thing?
I’ve experienced that with my Meniere’s. Every time I’d have a flare-up of that, my hearing would decrease a little more, to the point where now I cannot hear anything below 90 decibels in my left ear.
My wife is worried, I’m worried…it’s not a pleasant time. Both of us worry about health, finances, future, etc. But, I’m sure these are things that all of you had to deal with at some point, as well. It’s just “my turn”, I guess. I wonder if the worrying would be any less if I just “gave in” to the illness and stopped trying to continue a “normal life”. What a horrible thought…to accept that you’re no longer “normal”. Is that our biggest struggle after being afflicted? Is it worse for men than for women? I know that sounds sexist, but, really…men are taught from birth that they’re supposed to be the strong ones, the “bread winners”…”Big boys don’t cry, son”…that sort of thing?
Can you tell it’s a “black dog” sort of day? 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.
Sorry to be so somber; I tend to get “philosophical” when I get this way. I feel like I have a PACK of black dogs chasing me at the moment. 🙁
AnonymousFebruary 14, 2010 at 2:24 pm
[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]
AnonymousFebruary 14, 2010 at 5:01 pm
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).
AnonymousFebruary 16, 2010 at 11:30 pm
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.
AnonymousFebruary 17, 2010 at 9:31 am
When I had a “crushed” (that’s the doctor’s term, not mine) nerve between C6-C7, and had to have a discectomy, the doctor told me that nerves heal “from the spine outward”.
I am going to do some research, but that may explain why sensory is the last to heal.
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