newbie
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January 15, 2010 at 10:35 am
Hello
Been viewing the forum posts and its all very helpful.
One thing that seems to be the case is that diagnosis is not straight forward at all.
I had nerve conduction tests which showed ‘no evidence’ of demyelination but I am not convinced.
Does anyone know what the definitive test is for CIDP?
thank you
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January 15, 2010 at 11:22 am
[I]lumbar puncture, nerve conduction and nerve biopsy ( be careful who does the biopsy, that’s crucial as any stretching or mishandling can cause missed and/or incorrect diagnosis ).
That’s about “it” as far as I know. Hopefully others will be able to add to this.[/I]
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January 15, 2010 at 11:25 am
Hiya. Regrettably, there is no definitive test. CIDP is usually diagnosed when everything else is ruled out.
There are, of course, pointers that indicate CIDP — reduced velocities on nerve conduction studies, raised protein in the spinal fluid, ‘onion bulb’ formations in nerve biopsies, reduced or absent reflexes, impaired gait, etc. Taken together they may indicate CIDP, but these are seen in other, more common disorders as well. And it’s certainly not unusual for a person with CIDP to have one symptom and another CIDPer to have totally different test results.
The way my diagnosis was finally settled was by my having a twelve-week course of IVIg (two days every fortnight). When it worked, I was officially diagnosed as having CIDP.
Keep fighting,
Deb
London -
January 15, 2010 at 11:44 am
These tests that have been mentioned are all good for getting a dx of CIDP. I had 3 lumbar punctures in all, a sural nerve biospy, a lip biopsy (to rule out Sjogrens), 4 complete MRIs, 2 EMGs and nerve conduction studies, a CT-scan, and also a back surgery to remove nerve roots. I was at Mayo & think that this was a little bit of overkill.
CIDP is an illness of the peripheral nerves, usually beginning with tingling & numbess of the hands & feet & ascending up the arms & legs after that. It usually involves not just lack of feeling & numbess, but also weakness in these areas as well. It does not happen rapidly, as in GBS, but over weeks or months. It also tends to be symmetrical, what happens one one side is usally happening on the other as well. Fatigue may or may not be evident as well. I also lost my taste for food, was unable to eat anything for about 3 weeks, as it all tasted like metal. Hope this helps you…
Pam -
January 15, 2010 at 11:46 am
Elevated protein levels in the spinal fluid is as conclusive as the docs. can get. My understanding is to diagnose it with a nerve biopsy requires longer term damage for the “onion bulb” to form and it can leave a permanetly numb area on your ankle.
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January 15, 2010 at 7:11 pm
[QUOTE=eightplusfive]Hiya. Regrettably, there is no definitive test. CIDP is usually diagnosed when everything else is ruled out.
There are, of course, pointers that indicate CIDP — reduced velocities on nerve conduction studies, raised protein in the spinal fluid, ‘onion bulb’ formations in nerve biopsies, reduced or absent reflexes, impaired gait, etc. Taken together they may indicate CIDP, but these are seen in other, more common disorders as well. And it’s certainly not unusual for a person with CIDP to have one symptom and another CIDPer to have totally different test results.
The way my diagnosis was finally settled was by my having a twelve-week course of IVIg (two days every fortnight). When it worked, I was officially diagnosed as having CIDP.
Keep fighting,
Deb
London[/QUOTE]
Thanks debI am in Uk too, but not London. did u ever have normal nerve velocities but with symptoms ? What were ur general symptoms ?
john
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January 15, 2010 at 7:16 pm
[QUOTE=Pam H]These tests that have been mentioned are all good for getting a dx of CIDP. I had 3 lumbar punctures in all, a sural nerve biospy, a lip biopsy (to rule out Sjogrens), 4 complete MRIs, 2 EMGs and nerve conduction studies, a CT-scan, and also a back surgery to remove nerve roots. I was at Mayo & think that this was a little bit of overkill.
CIDP is an illness of the peripheral nerves, usually beginning with tingling & numbess of the hands & feet & ascending up the arms & legs after that. It usually involves not just lack of feeling & numbess, but also weakness in these areas as well. It does not happen rapidly, as in GBS, but over weeks or months. It also tends to be symmetrical, what happens one one side is usally happening on the other as well. Fatigue may or may not be evident as well. I also lost my taste for food, was unable to eat anything for about 3 weeks, as it all tasted like metal. Hope this helps you…
Pam[/QUOTE]
Thanks PamI got the tingling and skin sensitivity all over – plus fatigue and numb left foot somewhat. also the night time myoclonic jerks. nerve conduction showed boardline axonal neuropathy, ir not demyelinating, at least about 6 months ago and 6 months before that too, and in 2007 actually- so if it is demyelinating its happened recently.
It’s very exhausting seeing Drs who dont take it seriously – in UK.
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January 15, 2010 at 7:23 pm
[QUOTE=eightplusfive]Hiya. Regrettably, there is no definitive test. CIDP is usually diagnosed when everything else is ruled out.
There are, of course, pointers that indicate CIDP — reduced velocities on nerve conduction studies, raised protein in the spinal fluid, ‘onion bulb’ formations in nerve biopsies, reduced or absent reflexes, impaired gait, etc. Taken together they may indicate CIDP, but these are seen in other, more common disorders as well. And it’s certainly not unusual for a person with CIDP to have one symptom and another CIDPer to have totally different test results.
The way my diagnosis was finally settled was by my having a twelve-week course of IVIg (two days every fortnight). When it worked, I was officially diagnosed as having CIDP.
Keep fighting,
Deb
London[/QUOTE]
ThanksNot at all keen on LP or nerve biopsy. But it looks like I’ll have to have the LP at a minimum:(
Do drs recommend nerve conduction tests a few weeks / months apart ?
Thank you
John
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January 15, 2010 at 7:54 pm
the end all and be all of diagnostics. I was ‘very good’ then ‘good’ then ‘not good at all’ In my first year of nerve conductions studies. It went downhill and faster as the numbness spread. Plus the fatigue, and muscle weakness because of the fatigue….. The clincher was the spinal fluid assessment taken almost a year after my onset. The #’s were absurdly high for the specific anti-bodies at work on my nerves. One month after the test results plus blood works came in? I was on IVIG…which worked for me [WHEW!].
To clue into a diagnosis is YES the elimination of ‘other’ issues, but it must show: 1-slowed to no nerve conduction or muscular conductions; 2-increased number of bloodwork indicated anti-body activity; 3-no indications of any tumors or traumas using MRI and other radiological techniques; and lastly 4-certain high levels of anti-bodies present in the spine [ergo the spinal tap issue]. The very last resort IF all of the above are inconclusive is the seural nerve biopsy [where they cut out a bit of nerve – usually about 1-4 inches at the ankle] and even then things mite not PROVE CIDP.
Actually there are about 10 criteria for determining CIDP? But I can’t find those web sites anymore…I’ll check and see IF I can find some. I’d sort of met the 7 out of 10 rule in my humble opinon? My doc was ahead of me on this opinion tho. Thus I got treatment. I truly wish that my first neuro had NOT been such a trogdolite? If he’d not been so. I would have gotten treatment much sooner and thus prevented the nerve damaged I’d had.
So Keep at it. Keep faith that you have some clue as to what is going on with you? And that you WILL Find a super doc and get treated AND SOON!
PS Lumbar punctures are a no-brainer IF you read up all about them before and follow DIRECTIONS EXACTLY! IF it gets you treatment? Its easy to deal with! Hey it’s easier than a colo-rectal exam! And no preps! Just not eating some things! -
January 15, 2010 at 9:03 pm
[QUOTE=homeagain]the end all and be all of diagnostics. I was ‘very good’ then ‘good’ then ‘not good at all’ In my first year of nerve conductions studies. It went downhill and faster as the numbness spread. Plus the fatigue, and muscle weakness because of the fatigue….. The clincher was the spinal fluid assessment taken almost a year after my onset. The #’s were absurdly high for the specific anti-bodies at work on my nerves. One month after the test results plus blood works came in? I was on IVIG…which worked for me [WHEW!].
To clue into a diagnosis is YES the elimination of ‘other’ issues, but it must show: 1-slowed to no nerve conduction or muscular conductions; 2-increased number of bloodwork indicated anti-body activity; 3-no indications of any tumors or traumas using MRI and other radiological techniques; and lastly 4-certain high levels of anti-bodies present in the spine [ergo the spinal tap issue]. The very last resort IF all of the above are inconclusive is the seural nerve biopsy [where they cut out a bit of nerve – usually about 1-4 inches at the ankle] and even then things mite not PROVE CIDP.
Actually there are about 10 criteria for determining CIDP? But I can’t find those web sites anymore…I’ll check and see IF I can find some. I’d sort of met the 7 out of 10 rule in my humble opinon? My doc was ahead of me on this opinion tho. Thus I got treatment. I truly wish that my first neuro had NOT been such a trogdolite? If he’d not been so. I would have gotten treatment much sooner and thus prevented the nerve damaged I’d had.
So Keep at it. Keep faith that you have some clue as to what is going on with you? And that you WILL Find a super doc and get treated AND SOON!
PS Lumbar punctures are a no-brainer IF you read up all about them before and follow DIRECTIONS EXACTLY! IF it gets you treatment? Its easy to deal with! Hey it’s easier than a colo-rectal exam! And no preps! Just not eating some things![/QUOTE]
Thanks HoemagainCan I ask if you are in the US or UK ?
You said the LP was ok but I’ve heard others say its pretty unpleasant.
I had the colon thing – not pleasant but no after effects 🙂
John
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January 16, 2010 at 4:09 am
Hi, John.
The sensory problems (numbness and tingling), the autonomic problems, and some motor problems have never improved, despite some rather broad variations in EMGs, to the extent that my neuro has continued testing for other things in case I have something along with the CIDP (the nerve biopsy — which I don’t recommend — and the second LP were done with that in mind). I’ve tended to have EMGs yearly so that my neuro has something to compare with. But there aren’t any solid guidelines and doctors tend to do different things at different times.
CIDP is rare, and most doctors — even highly trained neurologists — have never seen a case of it. And in some instances, the clinical exams and tests don’t bear out the symptoms that the patient says he has, leaving the doctor to assume it’s psychological. My first symptoms, in 1994, were breathing and swallowing problems. Normal tests didn’t indicate that anything was wrong, so the doctor diagnosed early menopause (I was 39). It was several years after I was diagnosed with CIDP (which was in 2001 after a couple of years of the ‘normal’ sensory and motor problems) and an EMG that tested essentially every nerve in my body, that it was decided that the breathing and swallowing are probably from CIDP.
The support group here in the UK has some good information on CIDP ([url]www.gbs.org.uk[/url]) and if you’d like to chat send me an e-mail with your phone number (eightplusfive@googlemail.com) or Skype me (you can find me using that same e-mail). You’ll also find our Facebook page (UK Guillain-Barre Support Group) is very active.
Keep fighting,
Deb
London -
January 16, 2010 at 6:48 am
[QUOTE=eightplusfive]Hi, John.
The sensory problems (numbness and tingling), the autonomic problems, and some motor problems have never improved, despite some rather broad variations in EMGs, to the extent that my neuro has continued testing for other things in case I have something along with the CIDP (the nerve biopsy — which I don’t recommend — and the second LP were done with that in mind). I’ve tended to have EMGs yearly so that my neuro has something to compare with. But there aren’t any solid guidelines and doctors tend to do different things at different times.
CIDP is rare, and most doctors — even highly trained neurologists — have never seen a case of it. And in some instances, the clinical exams and tests don’t bear out the symptoms that the patient says he has, leaving the doctor to assume it’s psychological. My first symptoms, in 1994, were breathing and swallowing problems. Normal tests didn’t indicate that anything was wrong, so the doctor diagnosed early menopause (I was 39). It was several years after I was diagnosed with CIDP (which was in 2001 after a couple of years of the ‘normal’ sensory and motor problems) and an EMG that tested essentially every nerve in my body, that it was decided that the breathing and swallowing are probably from CIDP.
The support group here in the UK has some good information on CIDP ([url]www.gbs.org.uk[/url]) and if you’d like to chat send me an e-mail with your phone number (eightplusfive@googlemail.com) or Skype me (you can find me using that same e-mail). You’ll also find our Facebook page (UK Guillain-Barre Support Group) is very active.
Keep fighting,
Deb
London[/QUOTE]
thanks debi emailed u my number.
john
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January 16, 2010 at 1:56 pm
On the LP, my daughter was 5 years old & had one while she was wide awake. If she can do it, then so can you! It really isn’t that bad.
You will be given a shot in the spine to numb the area (that is the worst part). Then a small catheter is placed in the spine. An x-ray is taken to make sure the needle is in the correct spot. Then you are slightly rolled over onto your side so the fluid can be collected. You are then rolled back over, the catheter is removed & you are sent to recovery to lay down.
You are told told to drink caffeine (it helps with headaches) and to rest for the whole day. And that is it!
Kelly
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January 16, 2010 at 3:24 pm
Hi, Kelly.
LPs are done slightly differently in different hospitals. Mine were done without the x-ray, and rather than caffeine I had to drink water and hot tea, and lie fairly still for a couple of hours. And then I got the rest of the day off work. But neither of mine caused any problems.
Deb
London
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June 3, 2008 at 9:03 pm
Hi. My husband was diagnosed last June w/ GBs (MFS). He is 32. Milder case. He was in the hospital for ten days and recieved plasma, had a few physical therapy sessions to regain his balance and strength, and recovered within weeks. Or so we thought. In December he started with symptoms of a cold. Then he started having tingling in hands and feet and his legs would start to give out on him. This lasted a few weeks and he was back to normal. About a week ago he started with the tingling and weakness in legs again. Most of the tingling is gone. He feels like the symptoms are on the way out. He also had minor joint pain and has swollen lymph nodes. I should mention that each onset of these symptoms he was very physically active. Is all this normal? Would these be considered relapses or side effects. Thanks for any help. Michelle
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June 3, 2008 at 9:58 pm
Hey Michelle it’s nice to meet you. All of what you describe sounds completely normal, He will be in recovery longer then he even realizes. It’s very important that he listens to his body and when he feels tired he rests. When we (gbs patients) push ourseves we usually pay for it and have diminishing returns. My own personal way of dealing with this disease is to push myself but stop short of maximum. If we do to much we end up with a setback. That is the best advice I can give. If I can ever be of help to you and your hubby feel free to email me anytime, jerimyschilz at hotmail dot com
Take care,
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June 10, 2008 at 1:35 am
Jamie here. Can’t be of any help with your questions, as im new here, too. Just wanted to say hi and wish you good luck.
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June 10, 2008 at 12:01 pm
Thanks you too!
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June 10, 2008 at 12:15 pm
[QUOTE=micmackey]Thanks you too![/QUOTE]
Hi, I,m new to this sight and thought I would share. I contracted GBS 8 years ago and regained 60% function. It seemed forever. I have had CIDP added to the mix as of a month ago and found the same symptons as GBS. I’m still waiting for Spinal Tap results. Tell your husband to hang in there.Da Rodg:cool:
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June 10, 2008 at 12:32 pm
Thanks. This disease is so fustrating. The not knowing is the worst. We don’t believe he has CIDP. He is an athlete so his job is physical and it seems he is just over doing it. But who knows! I’m glad to have found this website. Michelle
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June 10, 2008 at 3:54 pm
Good afternoon,
I wanted to welcome everyone to a WONDERFUL site that is full of people who understand, because they have been there. Both as patiets and caregivers.
I’ve been able to come to this site with problems and just “unload” with people always offering encouragement.
Please feel free, ANYTIME, to ask questions or if you need a kind word all you have to do is ask.
Many, many times I visit the site just to read what familiar people have written. The encouragement that is offered to someone else, helps me through some times as well.
Just wanted to say hello and welcome.
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Newbie…
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August 7, 2007 at 2:58 am
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August 7, 2007 at 7:43 am
Welcome to the site! Sorry you have to have CIDP to join us but you’ll find alot of support and a great many friends.We all learn from each other so more stories and input are always welcome.
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August 7, 2007 at 9:29 am
Welcome — everyone listens on this forum and supports each other. We’re ready to hear your story whenever you’re ready to share it – we’re good listeners!;)
Cathy
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August 7, 2007 at 9:56 am
Welcome to the forum. Remember, sharing what going with someone can be a big help. So feel free to share what ever you want. There are people here who can understand what you are going through. Many have have been down the same road. They can offer support and advice. Please don’t worry about a “long” posting. I think you will find some really great “listeners” here. 🙂
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August 7, 2007 at 11:56 am
Hello,
Welcome to your new family where we understand because we feel what you feel. It sounds like you had all the necessary tests done, though he spinal was very painful for you. It shouldn’t be like that, many of us have an easy time. Many of us are also misdiagnosed. I was told I had gastro problems and wasted three months going through those tests. Come back and ask whatever questions you have.[IMG]http://img409.imageshack.us/img409/7962/welcome2zp3.jpg[/IMG]
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August 7, 2007 at 2:25 pm
Welcome
Please tell us how you are doing. We all share information so we can learn.
My lumbar needle was put into a nerve and the pain was so bad, it’s really
undescribable…so I know how it hurt.Keeping positive, eating well, exercising moderately, will keep you going.
Miami Girl
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August 7, 2007 at 3:00 pm
Thanks everyone for the warm welcome. Acceptance is something I find rather rare these days. It seems that much less than perfection isn’t quite enough for todays society. I’ve become quite self concious regarding my condition and pretty much keep to myself because of it. Having moved from my hometown about a year ago, it’s been difficult to make any new aquaintences. I’m not really a people person. Since this all has developed I find it difficult to keep my head up. It’s taken more from me than just the visible aspects. I know there’s others here and out there a lot worse off than me but find it hard to deal with the fact that I’m looked upon as different. Different as in NOT in a good way. I’m sure I’ve been presumed drunk by many strangers. I tend to slink in and out of town un-noticed to get what I need so far as groceries and staples of life are concerned. I know it’s not right but I do it anyway. My percieved inferiority may very well be a residual of the loss suffered right after my diagnosis. Within a year of my dx, Id left my job since I’d been struggling for years just to get through the workday being exhausted by the time I’d showered and dressed. I’d sit on the couch to put on my shoes and feel simply exhausted before my day even began. Falling asleep at the wheel on the ride home was commonplace. It would’ve just been a matter of time before well, you know. Once the retirement ball began to slowly roll my then, so called wife told me to leave. Guess she either didn’t sign on to be married to a nobody or chose to omit the, “in sickness and in health’ part. I was sort of a hotshot on the job with a lot of responsibility. Co. truck, pos big house, huge garage full of toys and nice vehicles. Never full of myself but proud of what I’d accomplished over the years. I started at the bottom and worked hard for to get where I was. I wasn’t rich by any means, just doing pretty good for where I lived. With nowhere to turn but to family and friends, I stayed with my mom and close friends for the following year until my pension and disability finally came to fruition. I’ve had my own place now for almost a year although tiny at 450 sq ft and rented at that. What with my credit being ravaged by being without an income for over a year, home ownership seems all but un-attainable but it’s one of my goals. I’m casually looking for a place to call my very own again… Someday! I guess there is something to the saying, ”If you don’t have your health, you have nothing.” To hell with this and that, I’m off to finish painting my dining room. Yep, 450 sq ft and a dining room to boot… Woohoo!
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August 7, 2007 at 6:39 pm
Taking a break from painting and just wanted to comment regarding pouring over the many posts here. Recognizing and relating to many of the pains and trials we mostly share. It’s not an easy read by any means. God bless you all.
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August 7, 2007 at 7:01 pm
Hey There
Now, now…society is just that, who cares what others think…your mind is
still there and working quite well. I, too, felt “abnormal” when I became
attached to a wheelchair, but, you know, people will think what they want.
Since then, I got back my spirit and said “screw them”. I am smater than the
average joe, I have a disease that prevents me from doing what I use to do.I shampoo my carpet with a Bissell machine, I vacuum, I clean my windows,
wash my clothes, feed my cats, rake leaves in my backyard, etc. My food
shopping is done with my sister, since I don’t drive anymore.Keep your spirit up and your mind always learning…
I’m divorced, but, if I was still married, my husband would have not taken too
kindly to this disease. So, you know what…I’m glad it came after the big
divorce. I have long since given up on trying to please people that stare
at the food store, or doctor’s office…they can only wish what I have done
and accomplished. It’s all about your outlook and how you feel.I have not painted any walls, but I have painted a few doors…trimmed some
bushes…lol…so keep on.Good luck on your painting…we are here to help, listen and encourage…
Miami Girl
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August 7, 2007 at 7:18 pm
Welcome to our forum. I think you will fit right in with this group. Check out some of the threads on photos, Nascar and travel around the world, even if it is just naming names of cities. Having a bad day, let us know! Got a brag let it out! Sounds like you have alot of catching up to do and memories to forget and some new memories to make! 😎
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August 7, 2007 at 9:14 pm
I just want to welcome you too and invite you to tell all you want. I found this site [I][U]five years after [/U][/I]my diagnosis and because I never had anyone else to talk to about this I am constantly checking in here and writing my heart out because man, it is like being on a desert island for years and discovering that the monkey in the tree above really talks!!! ( not that I am calling anyone a monkey) It just helps to find others with similar if not exact stories. Please keep us posted.
Linda -
August 7, 2007 at 9:29 pm
I see quite a few folks here are on Cymbalta. I was also, “off-perscribed” this med for depression and nerve pain. Took it for two years. It worked for a little over one. Once it became less effectve, the ugly side effects outweighed the benefits. Since my neurologist had passed away last fall, I just decided to stop taking it rather than seek another doc. Knowing full well that I was not to just quit cold turkey, I did it anyway. What a ride! I highly suggest no one but no one try’n pull that one off. I’m glad to be off it now for over six months. Dopey me, decide to go off my meds in the dead of winter being the most depressing time of year in the first place. I kow I should find another neuro but I’ve long ago had enough. So long as I have no major setbacks, I’d just assume be left alone so far as playing nick nack paddy whack, poke me with a stick and being repeatedly shoved into tube after tube so often I feel like a clown what I am, being fired from a cannon. ENOUGH I say!
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August 7, 2007 at 10:02 pm
Hi Noyacant, welcome to the family. don’t apologize for long posts, they are welcomed around here. vent when ever and about whatever you need to. that’s what family is for!:) take care.
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August 7, 2007 at 11:01 pm
NOYACANT, Welcome!
You have come to the right place to rant, rave and or course, aske questions and give a little input 😉 .
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August 8, 2007 at 2:21 pm
Welcome, Boy do I understand what you have gone thru.I also have just recently joined this site. I knew it was here but would just read the stories don’t know why it took me so long to get involved but so glad i finally did. Everyone has been wonderful and I love to read long stories so don’t worry.
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August 8, 2007 at 4:30 pm
Welcome Noyacant! Nice to see you posting!
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August 13, 2007 at 2:52 am
Thanks to all y’all for the warm welcome. Almost makes me feel like I belong somewhere for a change. Anybody here suffer from vampire like behavior? Aside from the blood sucking thing of course. Always been sort of a night owl but just don’t get up early unless I absolutely have to. Therefor I’m not tired until late. My mind stays active long after the body’s shot for the night. Needing the wheels to grind to a halt before I can sleep. I stay up, eat Bayer Back and Body like M&Ms and watch ancient episodes of The X Files, read and or peruse the net. Hence the lateness of my post. Kinda got a kick out of the numerous replies to my original post regarding my purported apology for long posts… Such as this, perhaps? lol Funny part is, I didn’t apologize for my lengthy post, rather it was for my possibly posting in the wrong place for an intro. Haahahah… And Lynette, didja have to go and call me boy?:p 😀
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Newbie
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May 8, 2007 at 10:38 am
Hi there, all. I was pre-diagnosed with GBS yesterday. I had to get a CT, MRI and then a Spinal Tap on Sunday. I am waiting for the final results to come back, but the Dr.s are pretty sure this is what I have. I’m pretty freaked out, so I figured there were others that can help me grasp what it is that I have.
Ali- 25 years old
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May 8, 2007 at 10:42 am
Welcome Ali.
I’m glad you found us so quickly.
The two main things I’ve leared on this site are that Everyone’s GBS is different, and that no matter how bad it gets, someone else has it worse. Hang in there, kid. things do get better. Some just take longer than others.V
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May 8, 2007 at 2:17 pm
Ali. So glad you found our family. This is the best place for all the questions you will have and a place to vent when needed. Yes this is scarey and quite hard to grasp at first but thats why we are here to help you get through this. Remember to get lots and lots of rest that is very important. Welcome to our family and remember your not alone.
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May 8, 2007 at 6:03 pm
Glad you found this Forum- lots of good info here!
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May 9, 2007 at 1:05 am
Welcome Ali and glad you found us.
Jerimy
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May 9, 2007 at 4:53 am
read up on GBS all you can … one of the worst things about GBS is not knowing what is happening to you. You are lucky to have been diagnosed and still be able to join the forum. A lot of us dont find the forum until we are over the worst and trying to find out about what it was we went through.
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May 9, 2007 at 9:48 am
hi ali & welcome,
the spinal tap can give false negatives. ask for ivig so your body can stop destroying itself. take care. be well.
gene gbs 8-99
in numbers there is strength -
May 9, 2007 at 9:53 am
Thank you, all. It was a very long road to even find a pre-diagnosis. Right now its my eye site that is really giving me problems. Its causing slight vertigo so its hard to stay focused on anything for even a small amount of time. Even typing this will make me want to take a 2 hour nap. My left side is dragging so I am walking with a limp. They say it will get better with time, but its hard to be patient when you’ve been stuck in bed for weeks.
Are there any types of eye exercises that may help strengthen my sorta lazy left eye? Any ideas?
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May 9, 2007 at 10:22 am
ali,
you need rest & ivig more than exercise. listen to your body. it knows what it wants. take care. be well.
gene gbs 8-99
in numbers there is strength -
May 9, 2007 at 10:55 am
AliMarie, when you say it has been a long road, how long exactly has it been for you? Did your symptoms come on quickly, or was it a number of months to get to a ‘bad’ point?
If it is gbs, then unfortunately you cannot push yourself too much and as gene and others said, rest is your best bet with Physical Therapy – are you getting any PT at the moment? -
May 9, 2007 at 3:50 pm
Welcome! Take it from one has hsd to learn the hard way: rest is indeed your friend.
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Newbie
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June 25, 2006 at 5:40 pm
I am new to this forum. I got Gillian Barre 6 months ago. It came on slowly over a period of 3 weeks. I was in the hospital for 3 months. I had to be on the respirator for almost 2 months. Right now I can walk but I get tired quickly and have to be careful about my balance. I use a cane when I walk outside of the house. I have a physical therapist come to the house once a day. Right now the worst thing is numbness in my hands and feet. Also my left foot and ankle is very weak. When I first got out of the hospital I couldn’t do anything so I suppose my progress has been pretty good. I can write some but slower than normal. I am hoping that I will be more normal in several months. I live in the Republic of Panama and so I have to commicate to the doctors and my physical therapist in Spanish which is a little difficult. The forum sounds interesting and it is good to know how others have coped with the same disease that has affected my own life so much in the last six months.
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June 25, 2006 at 5:55 pm
Robert,
Welcome to the forum. This is a great family. I have belonged for about a year. I have found the infomation very helpful. Good place to post any question you may have. -
June 25, 2006 at 7:29 pm
Dear Robert:
Welcome to our little community. I am glad you found us, but I also wish you never heard of GBS. Back to normal can take a while. Months may be a realistic goal, but it may tke years to get back to 100%. Keep working hard at therapy and you will be back at work sooner than you expect. Just don’t try rushing back too soon. Give your body time to heal. Nobody ever said on their deathbed that they wished they had worked more.
Lee
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June 25, 2006 at 7:42 pm
Welcome to the family Robert, glad to hear you are improving.
Jerimy
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June 25, 2006 at 10:34 pm
hi robert
welcome to the family. it sounds like you are improving quite well. take time to enjoy the slow pace right now because like most you will get back to a more normal pace eventually. good lucksherry
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June 26, 2006 at 1:48 am
Hi Robert,
I am 6 1/2 years post GBS.
When I was going to PT, I was told by everyone that I would slowly get better. It was hard, but one step at a time I increased by ability to walk and move around.
I too was in the hospital for about 3 months. I had PT after as outpatient for 4 months, 3 times a week, and I finally was able to get out of the wheel chair and walk with 2 canes.
They did tell me that to continue to improve, I would have to do exercises every day. It is hard, but they said something I will never forget. “If you don’t use it, you will lose it.” When I just don’t want to do those rotten exercises, I repeat this and the exercises are much easier.
Start slow and don’t over do, because you will start going backwards on you improvement. And this means always, even at 6 1/2 years I have to watch it. Of course, I over do, here and there, overwork myself and I pay for it for days. I think we all do this from time to time.
Just remember GBS means Getting Better Slowly.
Take care,
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