gbs or cidp ?
AnonymousAugust 22, 2009 at 2:20 pm
Call myself survivorX2 because I’m a 7yr stage 3 breast cancer survivor and I will survive this whatever I have. I 1st notice numbness in the balls of both feet after shopping all day & it would go away after sitting. It was getting a little worse some tingling & numbness more frequent so I mentioned it to my GP he did some blood work every thing was ok (this was Dec 2006)so I just lived with it. Last Aug it was getting worse so my GP order MRI’s and referred me to a neurologist. The MRI’s of the spine came back ok but the brain show something that could have been metastic breast ca so was referred to neuro surgeon who felt it was ok to wait and have a repeat MRI in three months(he was right the condition resolved itself). I saw the neurologist after seeing the neuro surgeon about the neuropathy and he did EMG on both legs and the results were severe sensory loss I also did not have any reflexs but no muscle problems; I was only having occasional tingling in my finger tips at this time. He had me on Lyrica which I had side affects and my GP took me off that and had me on Elival ( I have not had real pain just the irratating numbness and tingling which all the anti-depression med made numbness worse). I decided that since the neuro seem only interested in the abnormal MRI of the brain and not of the neuropathly and he would only talk at me not to me I would just see my GP this was all in the end of 2008 beginning of 2009. Things were staying about the same but by the beginning of April thing were getting worse my balance was off and I was having problems getting up the 13 steps to my apartment & my feet were swollen. He suggested going to Unv of Michigan (my ins would not cover so referred me to another neuro). Left work 4/20 having difficulty getting out of chair, walking ect and ended up just going on short term disability(I worked with a lot of nurses and one of them said she was glad I was leaving because she was afraid I was going to fall). I was just waiting until my appt 5/4 with new neuro but on 4/30 I could not even walk with a cane and my sister had to help me to stand up I called my GP and he said I should go to the ER. The admitting nurse wanted me to touch my nose I touch my eye they admitted me and I could not get out of bed without assistance. I had somemore MRI’s and blood work. I saw a new neurologist, oncologist & my GP they were confused because of my prior neuropathy and order a lumbar puncture the neurologist felt I had gbs and the next day I started 5 treatments of IVIG. Before the treatment I could not lift my legs, tap my feet, could do almost nothing except with assistant get out of bed and with a walker go to the bathroom. My right hand and arm was numb and tingling as was my collar bone area, chin, and nose. I also had tighting around my breast(feels like I’m wearing a bra even when I’m not) and tighing around my lower stomach. I started walking a little bit with a therapist and walker but could only go a short distance on the fourth day of IVIG took me to the hosp stairs could not do the first step but 3 days later I was able to do three steps.Was discharge to a rehab center for a wk than home 5/19. When I saw my neuro 6/4 she felt I was doing well walking with walker ect. but a few days later my hands were shaking and one of my legs gave out so I saw her again and she did not see a problem just felt I was agitated and wanted to prescribe some anti-depressiates which I told her I did not want(they make the numbness worse which is what is driving me crazy to begin with). I than saw my GP as a follow up from my hospitalization. He mention that I did well on steroids when I was in the hospital & I advised him that I was not on steroids in hospital and for some reason he put me on 40 mg of predisone for a week decreaseing it to 20mg for a week. The day after the 1st 40 mg I could’nt belive the difference but 3 days after taking the last pill I could hardly get up and difficult time walking with walker(have not been able to walk without walker since in the hospital. Since that time steroids have been increase decrease cannot seem to get off them (now even increase I do not seem to as well as I did when I first took them). I saw my neuro on 8/6 as a schedule appt and she wanted to know why I was put on steroids and that the dosage was to high. Advise I would have to have upper and lower Emg’s now to see where I was at to see if I should have another IVIG treatment. On the script she indicated rule out cidp which I’m having Thurs. I’m still trying to get off the steroids. I’m not sure of this neuro either she seems to like to talk not to listen and very conscious of the time; however my GP always returns my calls and never seems rush when I see him in the office. I’m just not sure why he put me on steroids without talking to the neuro.. I’m just not sure what to do are all neuro difficult to talk to? I guess I will have the EMG done even though I don’t want to. I still want to see my GP but a little concern about him putting me on the steroids. I’m now on long term disabilty and have applied for ssd since I lost my job and I’m 62.
Sorry this is so long
AnonymousAugust 22, 2009 at 9:31 pm
that they could be ‘connected’ [called ‘paraneoplastic neuropathy’] or not…
I realize this as 24 months after I was diagnosed w/the CIDP, I was diagnosed w/the BC [tho only stage 1]. Docs don’t normally connect nor test for cancer factors [even IF cancers are common in a family history] because the odds are simply to great – I know that I was not and I don’t complain. Tho any cancer, while ‘hatching’ [that’s what I call it] can wreak all sorts of havoc on us? AND, to make things worse? It can hatch for up to 7-8 years before showing it’s ugly head!
I had BC – I specifically asked the surgeon to CUT the nerves there, while others worry about ‘feeling’ etc? I have, like many others here FELT my nerves DIE and then try to regrow… I didn’t want to hurt more in such a sensitive area. Because I was stage 1, and had been on IVIG a while my ‘tumor’ was called a ‘tame one’. I am now almost 4 years out on the post-treatments, but they’ve done a number vis-a-vis osteo…
I guess the only other thing I could suggest is that IF you have ANY nerve tests? Be sure that you are NOT COLD! It has been documented that being too cold can provide false normals as being cold will slow the nerves as they ‘conduct’. My advise here? Bring a blankie? I know one testor was surprised when my toes were turning BLUE during a test [the room was cold?], need I say more?
As I’ve just written to another? Go in with a NOTEPAD and 5-7 [no more-their minds just can’t handle it?] questions and ASK! Go down the list and be clear in checking off and making notes….Sometimes? Think it scares them? Other times I believe that it earns their respect as you are organized and WANT to get better.
For me? IVIG worked during my first loading dose beautifully! And has enabled me to cope with life pretty well. So there is hope. But, then, I was on the IVIG BEFORE cancer was found and it possibly helped keep the cancer contained [tho some studies indicate such? They are small and inconclusive[
Do also take a look at the post-cancer meds you are on and their side-effects…. either chemo or the meds are notorious neuropathy side effect issues. They never elaborate on this issue, DUH?
Your GP sounds like the kind we ALL would love to have! Hug him and tell him a solid THANK YOU! Last thing? Take a good calcium supplement, one w/magnesium and vitamin D! Bone loss w/all this stress going on is inevitible. I am now in a wheelchair only following a big-bad fracture requiring major surgery that will not get me thru airport security screeners…. I’ve been taking it, but apparently? Not enough.
My heart is with you, I got [I]that[/I] tee shirt and well, honestly it doesn’t FIT!
Keep faith in your instincts – learn and question….
AnonymousAugust 23, 2009 at 12:15 am
I don’t know much about breast cancer, but I do know that chemo can cause neuropathy in the lower legs. But with the pattern you have described, it does sound like a pretty clear-cut case of CIDP to me. GBS would have been a much quicker decline initially. You didn’t mention the results of your lumbar puncture, was the protein level elevated? That is a sign of CIDP. Also the EMGs & any NCSs done are an important baseline. The fact that the 5 doses of IVIG that you received helped so much, is probably a good sign that the CIDP is relapsing/remitting. You will need constant treatments, but probably with monthly IVIG you will live quite normally. Remeber though, that those of us on this Forum are not doctors, just using years of experience & reading posts here.
AnonymousAugust 25, 2009 at 12:06 am
I see your in Michigan, what part? You really need a good neuro. Your GP really needs to be working with your neuro because the neuro needs to know what your GP is perscribing. The right hand needs to know what the left hand is doing sort of speak.
I would recommend Dr. Richard Lewis, he is a neuro in Detroit. I took my 20 year old son, Ryan there to see him in July and he was great, He listened and did some test and is very knowledgeable. He is now working with our Neuro in GRand Rapids. Not all neuro’s are knowledgeable about this disease so you need someone like Dr Lewis to see you then direct your neuro on course of treatment. Dr Lewis specializes in CIDP.Most neuro believe it or not have never heard of CIDP or might know of it but never treated it or only treated one or two patients.
Steroids are used for this illness as well. Ryan is on 80 mg of prednisone and plasma pheresis, IVIG didn’t work for Ryan.They are going to start weaning him down to a lower dose of prednisone in a few weeks. Cuz he can’t stay on this high dose for too long.
send me a note if you like.
AnonymousAugust 26, 2009 at 7:52 pm
Hi Survivor ,
First let me say Congrats on beating breast cancer !!! My Mom is a year out of her treatment and she was a stage 3 as well . I know my Mom had alot of neuropathy from her treatments as well . Her chemo doc told her she may always have residuals from it . She has felt some improvement but she took the heavy chemo and will take the pill form for 6-8 years and from what she is hearing that also causes neuropathy as well as pain. They put her on steriods as well .
I know watching my Mom battle cancer and then have all this leftover junk is so hard to watch . Like you haven’t gone through enough already .
I have had CIDP for 9 years now and I know her neuropathy and mine were very much the same …..
Good Luck and I hope you stay cancer free:)
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GBS or CIDP?
AnonymousSeptember 9, 2008 at 5:18 am
I was diagnosed in July 2007 with GBS, but the more I read and think I wonder if that is correct. In December my feet started going numb, I put it off as too many hours on my feet. In January it felt like my bed was vibrating, I figured I was imagining it. In July I got hit with the whole thing, but the first 4 doctors thought it was back strain and spasms, so pain meds and muscle relaxers. Next thing I knew I was crawling. Ended up having to get ambulance guys to carry me out and take me to hospital. There they did lots of tests, including a 2 1/2 hour MRI, needle tests on my legs, blood work and spinal tap. It came back positive for protein and I was put on IVIG for 5 days and sent home with a walker and a cane. Within a month I was walking again, but still have residuals. My feet are still numb, my balance is iffy, I drag one foot, and I am always tired. Which do I probably have? My dr. never had anybody else with this so she really doesn’t know all that much. Any help would be appreciated. Thank you, Rena
AnonymousSeptember 9, 2008 at 8:15 am
Hi Rena! Because your doctor does not know much about your illness, I think it would be a good idea to have them refer you to a specialist that does deal with this. You may need other kinds of treatment and the specialist would know more about helping you than the doctor that knows nothing about this. Your main concern is getting treated so you will get better and not get worse. It is a pleasure meeting you and welcome to the forum. Many others in here and a great group of very nice people. Hope you feel better soon!
AnonymousSeptember 9, 2008 at 10:23 am
Welcome Rena! You have found a great group of people that will help you thru this. We think possitive and use humor as our tool to keep us smiling. Since GBS takes time to heal you will see from reading posts that we all share the same residuals. We also differ so much in how we were treated and how we are recovering. Rehab has got many of us back to a point where we can function pretty well and take care of ourselves. The GBS still slows us down and we all have learned to be patient with the healing process, which takes time. Having a good relationship with a Neuro and your famliy doctor is a must. Sounds like you had a very speedy recovery and was out of the hospital and walking. I hope your healing continues to come quickly tool You case sounds much more like the one that my friends Son had. His was from the waist down and he bounce back quickly. Now his only residual is that when he rakes leaves or works in the yard he can feel that his body from the waist down gets tired. After a few days those residuals go away. Take care of yourself and listen to your body.
AnonymousSeptember 9, 2008 at 11:06 am
My GBS came on within days, but it can take longer and one can have mild episodes before it really hits. I know someone with CIDP and it was much more insidious. If you read through our posts you will find that many of us suffer from “residuals.” Some, like myself, have more problems years after our initial attack. As for finding someone familiar with GBS…it is hard because it is rare. If you are uncertain about your diagnosis, you might want to travel to a large teaching hospital with a good neuro dept. Good luck and don’t hesitate to ask questions here.
September 9, 2008 at 12:19 pm
Welcome. Well, this is a very tricky diferentiation. My then 10y/o was initially dx w/gbs. I would bother people on this site countless times asking if it was gbs residuals or cidp. They were so kind and always helpful, all hours of the day and night!!! After about 6 months post initial dx, I was psycho (probably have been my whole life LOL) so we went back to the doc and he did a repeat ncv/emg and tested the exact same nerves and had the same doc read it. The results were actually better than the first one 6 months ago after ivig initially was given, but not perfect. At that point the evidence diagnostically speaking was scetchy, clinically, he was weaker and his reflexes were worse. We decided to give ivig another try and once again, the results were miraculous, running again, able to dres himself, walk up the stairs etc. new dx cidp, continue ivig for 3 months at loading doses every 30 days. We rrpeated the ncv/emg again after three months and alas a perfect report, no slowed velocities or conduction blocks, consensus cidp usually does not get that under control so fast so it must have been gbs, just needed additional ivig to aid in halting the attack. OK, GBS again, six months later, another relapse. Today, we have been on monthly loading doses for 11 months. Our final dx is cidp, it is a very difficult disease to decipher. I do not think I would have done anything differently. If cidp is left untreated, you may sustain damage that you may not be able to repair from. It is important to find out which it is, gbs or cidp, a repeat ncv/emg repeat might be a good place to start. Hopefully it will be conclusive one way or another unlike our results. Luckily our doc did ivig to see if it would benefit since diagnostic tools did not give an answer. Good luck in your journey and your quest for answers. Everyone is so different!!
Dawn Kevies mom
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gbs or cidp
AnonymousNovember 20, 2006 at 1:26 am
I started with GBS in March 04, had all the symptoms of GBS tingling in hands and feet one day and can’t walk the next. My neuro in California changed that to CIDP in August 04. I moved to Texas in April 06. The neuro here says I do not have CIDP, but residuals of GBS. Take care – John
AnonymousNovember 20, 2006 at 8:19 pm
Kelly ~ I was diagnosed with gbs in Oct. 05. At 6 months I asked my neurologist for ivig, but he said it wouldn’t help. Now, six months after that, my neuro says I have cidp and has put me on ivig. I had my first infusions this past weekend. I’m glad I’m getting the infusions, but I’m not totally convinced I have cidp. How are you being treated?
BTW, I’m not walking on my own yet and have very poor endurance … thus the cidp diagnosis.
AnonymousNovember 20, 2006 at 9:29 pm
hope this finds you doing well… quick run down, i was givin the wrong treatment the first few weeks of this illness so that really screwed me. im noe into my third year of this illness. i have had about 6 transfusion the first year and now just meds to try and control the pain. i go to the doc dec. 13th hoping for more answers or better treatment. god bless, kelly
AnonymousNovember 23, 2006 at 2:09 pm
I am very, very curious as to our ‘expert’ opinions as I was reading the cidpusa.org web site yesterday and when I read the following it was like a BIG light bulb going off – or do GBS people suffer the same way????
[I]Early on the person has to use their hands to go upstairs or rise from the squatting position, these are signs of legs becoming weaker.. Some have difficulty to maintain their blood pressure, burning sensations like, Reflex Sympathetic Dystrophy. [/I]
The past few years have been very frustrating as I go through periods, like once a month, when I am down and hurting very badly all over. But to see it in print about the ‘rising from a squatting position’ was so totally me! Do GBSers have this same problem. I know it really won’t make a big difference, but maybe?!?! I told my old neuro about this several years ago to no avail. Also, note that my reflexes have never returned. And I have major balance problems especially in the dark or when my eyes are closed like in the shower. (Edit: Also, I have had an increased white blood count and low grade fever for years?!?!)
Thank you all for your opinions! After the first of the year, I might try to find a new neuro (on my latest insurance list) and see if I can get some help.
AnonymousNovember 23, 2006 at 9:59 pm
Kelly, I want to wish you good luck with your upcoming appt. Sure hope you get some answers!
Chrissy, you sure seem to have a lot going on. I sure would wonder about the white blood count and the fever. I feel I’m just starting to learn about all this stuff. Hope you find some answers soon.
Peace to both of you!
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