AnonymousFebruary 24, 2009 at 11:21 am
My first time at this so hopefully it works. My question is this….what does it mean to have CIDP the axonal form? I read in the GBS/CIDP literature that CIDP consists of damage of the nerve’s outer insulating myelin coating rather than the central conducting core or axon? So does that mean both areas are damaged if you have the axonal form? Also if the doc tells you there really is nothing that they can give you does that also mean that too much damage is showing up on the EMG/Nerve Conduction tests? If so, does that also mean that IVIG treatments won’t work? If the tests show significate damage, OK ,I can understand that we can’t reverse whats already damaged, but will IVIG help the legs not get worse?
AnonymousFebruary 24, 2009 at 12:19 pm
Hi, I am glad you found this site, and sorry that you had to find us. CIDP is sometimes hard to get your arms around, it happens in more than one body system. The nervous systems and muscular systems are damaged by the immune system which is carried around by the circulatory system. And it also affects the emotional system as well !!
Let’s see if I can help answer some of your questions.
The immune system attacks the myelin sheath that surrounds the nerve axon. The axon carries the signal along from point to point. Where there is damage to the myelin, the signal is slowed down, degraded, and possibly altered. The result is a weaker signal, no signal, or wrong signal. These show up in the body as burning, tingling, twitching, cramping, numbness, sharp pains, etc. etc.
Sometimes the damage to the myelin is so complete that the axon dies. If the axon dies, that particular nerve pathway stops functioning. Maybe the nerve went to your big toe, and now it is completely numb, or maybe it went to a spot on your ankle, etc, etc. Many times, an axon doesn’t die, it is just degraded or misfires. You have Schwann cells that help rebuild myelin, and restore function to the nerve pathway. ut remember, the same time you are rebuilding myelin, the CIDP process tears it down.
IT SEEMS TO ME… (opinion here, although I think I am correct) It seems to me that sensory loss is harder to repair/rebuild that muscular loss. If you are experiencing a lot of weakness and fatigue, IVIG, and other treatments seem to have a more pronounced and rapid effect. Numbness and other sensory aspects seem to respond slower, if at all.
PROBABLY, all of your loss is not axonal dysfunction. There is probably still some demyelination going on. If there is, some kind of treatment would be positive. A Spinal fluid Test will tell if the CIDP is active, and to some degree how severe the process has become. Did your neuro do one of those for diagnosis?
Regarding IVIG.. Think of your immune system as a police force that goes around your body looking for Bad Guys. They go round and round, hunting down invaders and taking them out. CIDP produces “BAD COPS”. These Bad Cops attack the myelin sheath, thinking it is foreign and needs to be destroyed. IVIG is a whole army of “Good Cops”. They come in and actually take out the BAD COPS all around the body. Then the Schwann cells have more time to rebuild the system and make you better.
Like I say, it seems like muscle strength comes back first, and sensory stuff later.
I hope this helps.
AnonymousFebruary 24, 2009 at 5:21 pm
I just wanted to give my opinion on something that I can relate to. I actually went through nine neurologists, two were for consultations and some I just didn’t accept what they were telling. The first three neurologists that I went to told me that I had no hope. The only thing to try was intensive physical therapy. They told me IVIG’S or other treatments would be useless and should not be done. My first consulting doctor, highly qualified in CIDP told me it was never too late. I didn’t like what neurologist #1, #2 and #3 told me, that’s when I joined this forum to talk to my people (who feel what I feel). How could those doctors tell me IVIG’S and other treatments wouldn’t work unless they were at least tried. Neurologist #6 was my treating doctor and my keeper. My CIDP is not progressing. I have been in a remssion for seven years. DON”T BE AFRAID TO SEE OTHER DOCTORS.
AnonymousFebruary 24, 2009 at 6:24 pm
To Dick S – Using the “Good Cops/Bad Cops” analogy is excellent. I’m going to use it to help my kids understand what is happening with their dad.
Kathi – CIDP is a little different for everyone. As you can read here in the forum, diagnosis and treatment regimens vary widely, as do treatment outcomes. In my experience, I failed treatment the first attempt, but was successful on the second try. Don’t give up. Find a doctor that you trust and that will help you battle with your insurance carrier. While CIDP is a chronic condition, proper treatment can stop nerve damage and help relieve pain. And as for your emotional health, this forum is a great source of information and reassurance.
AnonymousFebruary 24, 2009 at 7:39 pm
I understand your frustration. I also agree with others on this forum that CIDP is so variable, and causes different disabilities and different responses to treatment across the spectrum of people who have the disease.
I have an asymetric subset of CIDP that in addition to demyelination, also causes pretty severe axonal damage in motor and sensory nerves. Despite aggressive treatment and physical therapy it is really hard to gain that lost function back that is due to axonal damage. It is a long haul, but I keep at it.
Relative to treatments, I’ve settled on IVIG, and here is how I see it. If I did not do IVIG regularly, I would probably lose the ability to walk, possibly permanently, along with the severe advancement of other current disabilities within 12-18 months. With IVIG, I believe I have 10 – 15 years until I reach the same state given my current state of progression on IVIG. IVIG has proven to slow my rate of progression – and for that, it is extremely valuable. That could be the case for you too, but you need to find a doctor that is willing to dig in for the long-term.
In my personal case, I am ultimately looking to try an ultra high-dose chemotherapy regimen, like cyclophosphamide, to see if that will really knock the disease into a true “remission.”
AnonymousFebruary 24, 2009 at 8:24 pm
Thank you for your information. Do you have the CIDP axonal form? That is what they think I have. It has been like 4 yrs with the worst of the problems so just hearing something has been better than not knowing anything. I have the spinal tap this coming Monday so hopefully that will shed some more light on this. This particular nero has already said that she will pass me to a nero muscular specialist, one of the other nero guys here at mayo so hopefully they are more updated than she on the IVIG drugs which for me sure sound promising. I have already figure out that I may not get back what is already damaged severly but I can’t accept that we can’t stop the progression, I just don’t take NO for an answer. Thank you so much for your information. You all have been SO WONDERFUL & helpful. I have experienced this w/ lyme & I have always been the person giving the info so is kind of weird for me to seek out for myself & for this I thank you all very very much. I always go to people who can relate, & I have found that place 🙂
AnonymousFebruary 24, 2009 at 9:29 pm
If you think you can’t heal, then you won’t… If you think you will heal, then go ahead and heal!
I also have CIDP residual to chronic lyme and co infections and a boat load of autoimmune diseases. I was told that there was severe axonal damage, and that much of it would be permanent.
After more than 1.5 yrs of IVIG and intensive physical therapy in the form of Integrative Manual Therapy, swimming and rehabilitative snow and water, skiing, and neurofeedback I can say I am healing.
I believe some of my damage may have some permanance, yet I refuse to limit my healing possibility. I have very strong, balanced and functional moments, yet I am not symptom free.
I believe as does my neurologist, that some nerves have not and may not heal, yet my body is smart and other nerves are branching and doing the jobs of those still damaged. When I am stress physically, mentally and/or emotionally, there seems like there are not enough nerves to meet the demands of my system, inflammation will increase and symptoms will flair.
Nothing has ever been as bad as before IVIG, and flair seem to last shorter in duration, yet they are sometimes very intense and a bit scary.
Unlike others, I am not yet able to return to work, but with pacing I can exercise moderately, and keep up with my household chores to a relative degree. Home renovations and extra chores are still something of dreams, but making dinner often happens by me.
I echo other’s advise to keep looking for the right dr. You need someon with your vision and hope to help you develop a healing plan that you are a partner with.
I wish you well, and welcome!
AnonymousFebruary 25, 2009 at 12:24 am
If you are at Mayo, then you should be getting quality treatment and diagnosis. I certainly wish the best of both for you. The most trying time for me, and many of us here was the diagnosis period.
What I went through.. I didn’t know what was happening to me, other than it was happening to me. Everything they tested for came up negative, but Istill had problems. I was referred to another neuro, then another neuro, and finally to a research University where it still took 9 months to figure it out. So much conflicting information, so hard to sort through the appropriate information, what is relevant, what is useless?
By the way, If you are having the spinal Fluid test, normal is 45 and below. The lower the better. It measures a protein that shows up in the spinal fluid during an active phase of GBS or CIDP. Some people here have been up in the 300’s (that’s bad). It is a diagnostic tool, one of several clues that may help lead the neuro to a diagnosis. A negative test does not exclude CIDP, but it changes the odds.
As far as the “axonal” type. Axonal damage does happen to many of us. In many other cases, the damage stays to the myelin and the axon gets irritated or inflamed. That is why anti-inflammatories, including corticosteroids like prednisone seem to help. I would rather refer the damage to “sensory” and “muscular”. There may be an axonal component in both, but many of us are more sensory, or more muscular in symptoms.
There is also a relapse-remitting component and a chronic progressive component. Most CIDP’ers are relapse/remitting. An immune attack starts and builds, you have symptoms (of varying intensity) and after a period of time(or intervention) the symptoms subside. Probably 80% are this type. Maybe 15% are chronic progressive. That is they don’t have the swings of more severe and then recovery symptoms. Chronic progressives just get worse sometimes bit by bit, sometimes quickly.
Residuals are those damages that never go away. These are the permanent damages. Most of these would be axonal loss, most are usually sensory in nature, but not exclusively.
I hope I helped inform, not confuse.
AnonymousFebruary 25, 2009 at 8:25 am
As you say, you have found the right place. I remember how happy I was when I found the forum…finally someone who understood ! Turns out everyone understands and I have met some of the very best people in this …well, I was going to say country…but that’s not true…I’d have to say the best people in the world !
I have axonal damage, severe sensory loss and motor loss. I cant feel either of my feet, unable to move any of my toes, cannot lift my feet to a 90 degree angle…I have sensory loss in both hands and now turning to motor loss. I am a slow progressive type…I was diagnosed a bit over 2 yrs ago and have very slowly declined with no improvement.
I did IVIG for about a year and stopped for about 4 or 5 mos. BIG mistake. My dr said there was no evidence that my disease was active and we should wait. I went to a different dr that said, NO, you are young, we dont wait, we treat. Her problem was that she didnt treat aggressively enough. About 9 mos later, alot of proggession later, too… I went back to the first dr b/c I really liked him and said I wanted to be back on IVIG and let’s get aggressive with it. He agreed and actually said that’s what he’s always said. (not how I remember it!)
Anyway…I’m back on IVIG…I get it over 2 days every 4 weeks and we’re gonna take it to three weeks now.
I’m getting 90g vs 20g. Big difference. Is it working ? I dont know. Sometimes after, I do feel stronger…but my damage is permanent …Iwhile I do pray to get better, we first have to stop the attack so I’m trying to prevent things from getting worse.
Keep up your excellent attitude…dont stop with a dr that you’re not happy with…and, be aggressive !
Lots of good folks are here to always help however they can….
Best of luck to you.
AnonymousFebruary 25, 2009 at 3:17 pm
Thanks for your post. 1st question is this… the way to write back to someone that responds is it by clicking the quick post on the bottom right? Some of the last posts I somehow went into sending them an email I think! I’m so totally new at this, I’m a phone person. This may be a very weird question but since I’m having my spinal tap on Monday & my night time spasms/cramps are not happening non-stop all night but still have every night & of course the twitching never stops, would I be crazy to walk every night starting tonight thru Sunday even though I know it will totally wear me out but with the idea of making the most of this upcoming spinal tap? I would want to be in a total flare if that is the right word! I just want the final test to be work whatever I can get out of it. Crazy I know but it has been such a LONG road to get to this point so I want to make the most of it!
Look forward to an answer, will check when I get home from work.
AnonymousFebruary 25, 2009 at 3:37 pm
If you want to reply to someone privately, you can click on their name and either private message them or email.
I dont know about trying to wear yourself out good to be in a flare for the spinal tap. That spinal fluid is going to be what it is regardless is my guess.
Keep in mind that some people do not have elevated spinal fluid but do indeed have CIDP.
My fluid was elevated…I think it was 75…not real high but definitely out of the normal range.
It was my spinal tap and EMG that diagnosed me. When I first went to the dr, I thought I had ALS, (Lou Gherig’s disease) b/c my Aunt died from that.
I was so scared.
Be careful about long walks and wearing yourself thin. Although I dont practice what I preach…and I DO pay for it…the very best thing you can do for yourself is REST, REST, REST! Anyone and everyone here will tell you that.
If you want to take that walk, take a shorter route and take a nap afterwards. Is that possible ? Are you able to walk unassisted…I mean without a cane or other aids ?
AnonymousFebruary 25, 2009 at 4:08 pm
Sounds like we all push ourselves 🙂 Yes I can walk unassisted after I get up & can get the legs moving which takes about like 1-2 minutes! Feel like an old women but they just won’t move & are so heavy & hurt. The only other problem is tripping which I can do so I just make a joke about it by looking behind me & telling all to watch for the speed bump! Have to find the humor which I do all the time, what else can you do! I will give a walk a try tonight & see how I do. I also have problems if I can’t sit down after a couple of minutes, legs start hurting & feeling so heavy but I just feel maybe this will help whatever is happening show up more in the spinal test. Thanks so much for your reply.
AnonymousFebruary 28, 2009 at 8:34 pm
1.) over-doing it. Yes, I guess we all do from time to time. This last time cost me three days basically without movement. Yesterday i was 23 out of 24 hours off my feet. I just couldn’t take it.
2,)regarding spinal. Mine was 54, or 56, one of those. Only 20% above “normal” This is a part of the overall diagnosis. This is not the definitive answer. It certainly helps eliminate other things. If you are “flaring” or “active” or whatever you want to call it, the number might be higher, but even if you are not, something will show because damage still happens. The “C” in CIDP means Chronic, it continually happens.
3.) regarding diagnosis. I had a nerve biopsy, the spinal test, two EMG’s, and clinical presentation before I got a diagnosis. Some people present more severe symptoms, and don’t need all the different tests. The big thing is for the neuro to figure it out and get you on some kind of treatment regimen.
4.) diagnosis isn’t always easier with a positive spinal test.
Remember to take care of yourself following the procedure. Your Dr. will give you a set of instructions to follow to avoid a headache following. PLEASE follow the guidelines to the letter. You do not want the headaches.
Not to be gross, but I pushed too hard on the toilet two days after mine, and I suffered through excruciating headaches. The only relief I could get was on my back. Others have had the headaches as well. Nobody wants them. Be a good girl.
Take care of yourself, I hope everything goes well for you.
AnonymousFebruary 28, 2009 at 10:35 pm
OK Dick, point taken, & thank you. You always seem to know how to put it, you are very good with words! I know it has been my choice to try to over do it but I’m knod of weird in my way of thinking but when you put it the way you did, chronic, it kind of puts it into perspective and I get it. I think my mayo nero already feels its CIDP but is still trying to make sure its not regular MS. When you said damage will show up more or less regardless on the tap because damage that is done will show up, how will it show up? What does the number you mention all about? And what does the pressure they talk about with the spinal mean? Does that have to do the inflammation? Well being a celiac, I will make sure I eat only what I’m suppose to so things on the “throne” will be easier after the spinal, definetly don’t want any problems there if I can help it:) Yep, I asked if I could drive myself home after the test because I only live like 1 m ile from mayo & they were like…I don’t think so! So my husband is having to take off to be w/ me. Will they give me these #’s then after the test or do they usually give them to you at a later date? This doc has already told me that the nero nurses are the ones that give me the tap test because she has not done one in like 10 yrs & that I would want the nurses to do it because they are very good at giving the test. It did say in the literature to take it easy the rest of the day & that you can go back to work but not if you have to do anything strenous but I decided to just take the day & come home & rest & watch movies & hopefully not get a headache because that is one part of my body that seems to work well except for the fainting episodes & plan on keeping my head out of it…so to speak! Hopefully just being off work for 1 day will be enough. Since having the knee replaced 3 1/2 months ago, don’t want to push my luck at work. Thank you again for your very wise words.
AnonymousMarch 1, 2009 at 6:46 am
I haven’t been on here in awhile, but I was wondering if anyone else here gets a combination of plasmapheresis & IVIG. I’ve been dealing with CIDP since 1/1/05. I get paralyzed from the throat down if I don’t get plasmapheresis every thursday and IVIG every friday. Before when I was just getting the pheresis or the IVIG, I had severe weakness, numbness & vision problems. I thought the damage was permanent because it was so severe. However, after being on the combo treatment for an extended period without interruption, everything seems to be firing fine. We did try to go to every other week several times over the past two years, but I immediately get paralyzed & the numbness, weakness, etc. comes right back like it was never gone. Even though some of my doctors thought my nerves were damaged permanently & even though several thought there was no way to get the CIDP to a manageable state, they were wrong. What that showed me was that with the right doctor & the right treatment, there is reason to hope.
March 2, 2009 at 11:00 am
Try MarkEns, I think he used to get a combination of both, if not, he could for sure help you with pp questions.
AnonymousMarch 9, 2009 at 12:54 pm
How did your test come out?
Usually they can get pretty quick results from that spinal fluid test.
The “normal” range is below 45. If you have no problems you might get a result like 5 or so.
Mine was 55 or 56, just a little bit outside the range. In my case it helped the Dr. continue the search, It wasn’t the defining moment. The thing that finally diagnosed me was a nerve/muscle biopsy. That showed demyelination and remyelination in both sensory and muscle fibers. That sealed the diagnosis.
I hope everything is good. I hope you recovered satisfactorially.
AnonymousMarch 11, 2009 at 12:20 pm
Your sweet to ask. Yes I got thru it just fine really not as painful as I had always thought. Would take one of those any day over the cramping/spasms! If it were only that easy 🙂 I listened to what they told me & remembered what you had said also & I did not get any headache so that was good news. I did want to teach me aqua class on the Wed. but was told not to because of the place on the back where the needle went in they did not want the pool water to maybe get in so I didn’t but am back in. I swear that is what has kept me moving all these years, have been teaching it for 15 years & is lately the only exercise I seem to be able to do & not pay for it later. I did have some very odd sensations during the test that the gal that had done them for 12 years had never heard but she told me it could be up to 10 days to get all the results back because they were looking at a lot of different things. The doc did call me on the Wed. (test done on the Mon.) & left a message saying so far the fluid is looking good so now I just wait for the final call on the rest. Wish I could have talked to her, its always that one call you miss that you wish you hadn’t so now my phone is glued to me. I do have a question for you that maybe you have answered before not sure but can the nerve conduction & emt test show the doc if there is a demylination process going on? I will check back later to see if you posted anything. I have not been on the forums for the last few days, we went out of town for our 29th anniv. & to be honest with you I really tried not to think about any of this but then went antiquing & walking & I was hurting so bad I had to lift my legs into the car. It just amazing me how this THING affects our bodys even the part where you feel like someone has just unplugged you & there is no energy anymore???? Why if its the lower part of the body that seems to be affected more times than not? I just don’t get it and why do the legs get so heavy & hurt? Thank you,
March 11, 2009 at 12:38 pm
The EMG lab folks were the first ones who CORRECTLY diagnosed my CIDP. So yes, neural conduction and velocity tests can very effectively indicate demyelination. (Unfortunately my 1st neurologist dismissed the diagnosis and treated me for vitamin B-12 deficiency instead).
My CIDP was positively confirmed by my spinal tap.
Question, question and then question again your neurologist to get the answers as quickly as you can. One lesson I’ve learned from my friends here is that you must be your own advocate.
May God richly bless you and heal you,
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