AnonymousOctober 9, 2006 at 10:43 pm
I find much strength from everything that I have read on this board, thank you all for being silent cheerleaders for everyone with this disease. My story is a little complicated, 3 years ago I had what they thought was GBS, but responded to IVIG (after contracting chemical menegitis). This past April after a respitory virus, an increase in stress and a lot of business travel I wound up with a “GBS” again. After 5 plasmspheresis treatments I walked out of the hospital and was back at work in a month. It was less than 4 weeks before the symptoms came back. This time it wasn’t my legs but my respitory system that began to fail – 5 more plasmapheresis and I was able to score over a 50 on my PFT – I went home but did not return to work. 2 neuros refused to accept that I had CIDP b/c I was asymptomatic. One even suggested that I “go to a pain clinic” as the pain I felt was probably not neurological.
8 weeks after the last hospitalization I saw a new neuro. At this pointy I couldn’t feel my feet and looked like Frankenstein when I walked and was in severe pain. He put me on 80mg of prednisone and said we’d talk Monday. Unfortunatly, this was Friday and on Saturday I went to get up from a nap and couldn’t move my legs at all. I spent 4 days in the hospital and began IVIG which has continued at home, after the initial 5 infusions I am now running weekly and still on steroids.
I have seen some progress – my hip flexers are working and I can bend my knees. This last attack has me in a wheelchair, my son and I both moved in with my parents as there house in more conducive, my husband is making this about him and since I am out of leave my office is terminating me. Even with all of this I’m not angry or sad – I am taking each day at a time and know that something good will come out of this. I am your typical type A – workaholic, supermom, etc…This has taught me that not everything happens when and where we want it and it is OK to slow down.
How do you all cope -year in and year out not knowing when this will come back? I look at my recovery in 2 steps, gaining as much back as I can from this episode and then keeping the next episode at bay. How do you not look over your shoulder and worry about what is next? How do you explaind CIDP and its effects to a 4 year old?
Thank you for reading this long winded post – I just needed to tell my story to people who would understand.
AnonymousOctober 10, 2006 at 7:47 am
I don’t have a lot of answers for you, but want you to know that you are not alone. These forums contain great people with vast knowledge and experience. Know that you have found a group of people who will support and assist as possible.
Hang in there … others with greater knowledge will likely reply soon.
AnonymousOctober 10, 2006 at 8:59 am
Welcome ~ when did your Dx change from GBS to CIDP? Neither diseases are easy to deal with but it is do-able as you will read from other ‘family’ members! Children are usually much more accepting of our limitations than we are. Simple explanations (age appropriate) to your little one will help his understanding.
Your journey will have it’s challenges but this ‘big family’ is here to help. Others will be along soon with their thoughts.
AnonymousOctober 10, 2006 at 9:42 am
Hi Cheryl, welcome to the family. It would be beneficial to you if you could involve your other half in trying to explain the way things are with you to your 4 yr old (at the same time your other half will get an education also!) that would help control the stress that this gbs/cidp disease has put into your life. living day to day is all any of us can do right now. don’t be afraid of whats in the future, it hasn’t happened yet and you can’t possibly change it if you don’t know how it will playout. Have you gotten a second opinion or even a third opinion on your relapses? i relapse also, sometimes it worse then the last time or different in the way it comes on or leaves me, condition wise. i also had aseptic menigitis from my ivig back in oct 05, i can never have ivig again due to that reaction-could be pushing the odds too much, but i have to say i did get back on my feet in just 4 days rather good i thought. have you had a consult with a physiologist? if not you might want to get one. one thing i have found out in the last 2 months is the more i do the more i over do and the faster i go into a paralysis event. rest is very important, listen to your body, rest at the first sign of breathlessness or excertion. you have to get to know your limits, i know its hard to figure them out and then to get your mind to stop on a dime but you have to. being a type a person myself i have pushed it too many times and only set myself up for the worse, another paralysis event and having to be away from my family. i am also a mom, 13 and 8, it is hard on them as well, i still have to remind them i can’t do what i use to do, they need to be reminded about it almost everyday. there is no easy way to get the info in easy to understand words for kids, or for adults for that matter. i’m still trying to find that answer and way out for myself, so if it comes to me i’ll share.
as far as cidp goes, you might not have that but might have chronic gbs relapsing/remitting type, like myself. it isn’t as prevalent as cidp is but it is around. the % of us is low only 3%, but its enough for me-i’m always told i’m in the elite group or i’m one of those unique people.:) and yes i’ve heard all the-its in your mind, its caused by pain-you need pain psychotherapy, and more. well just know its not caused by pain, its not in your head, and yes it is real. if you have pain, like alot of us do, make sure you get a med that is for nerve pain, i use neurontin. there are also anti-depressants and lyrica that can be used, but i have soo many allergies and problems with meds that i tried neurontin and have stuck with it for the last year-even telling my neuro or gp when i need to boost my dose. its just a matter of finding the right combo for you. i tried pain injections just prior to my first episode in aug 05, not sure if it was the cause or if was from an infection in my thigh shortly after having knee surgery that was the cause-all done in the 2 weeks prior. my neuro even thought antibiotics can cause it, but since i have had soo many relapses with no antibiotics involved that has been ruled out.
again welcome to the family, and feel free to ask any questions or vent whenever you need to, we’ve been there, and we understand. rest and take care.:)
AnonymousOctober 10, 2006 at 1:25 pm
Hi I’m new here to, not new to cidp though. I am praying that this support group will help with all the fusterations, and fear I have been going through.
When the cidp came back it was something my girls were not use to (8 & 5), I like you, did so much before that. Not being able to do things is something that I must explain daily. This has been hard because sometimes I think I can do something and then I realize I can’t. Six months into this I am finaly learning how to ask for help. I just talk to them both honestly and when I can’t find the words or I just want to cry because “I can’t”, I ask my husband to explain. My 5 year old (then 4) was scared to go to her day school and leave me at home alone in the beginning, luckly school was almost over and once summer was here she learned I would be okay alone. She is back a school and enjoying it again. I know it is hard for kids since my father has had MS since I was 6 years old. I never thought it would be me, yet here I am. One day your child will look back and see how brave you are and how even under such hard circumstances you were strong, and like me, will think how lucky we are to have such strong parents. This will only make your child compassionate to others like us, and we need more people in this world like that. God bless, I hope this helped.
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new dx ???
AnonymousJuly 15, 2006 at 10:12 am
My daughter was dx 1 week ago with GBS, she is 19 years old. It started with tingling feet and hands then arms and legs felt weak, a week after her syptoms started she started having trouble going up stairs, we went to University of Iowa hospital, they dx her condition within 1 hour (test confirmed GBS) she spent 3 days in the hospital to watch her breathing, there was no change so they sent her home, they did not recomend any treatment at all since she was still able to walk around. It has been 16 days since her first symptoms started (tingling in feet and hands). as of today she is very unsteady when walking, can not go up stairs, cannot get up off the floor by herself, she can stand up from a setting position if the chair is not to low and she has something to hang on to, it seems she hasn’t gotten any worse in the last 4 days. My ?? are – Should she have been treated with ivig (Drs recommended not, since she could still walk)? After 16 days is she out of the woods as far as progressing? In mild cases is recoverey shorter? Should we be pushing her to do exercises? Thank-you for any answers you can give me.
AnonymousJuly 15, 2006 at 12:05 pm
I am sorry to hear about your daughter. Please know that she is in our thoughts and prayers.
The Guillain Barre Foundation International recommends that all cases of diagnosed GBS receive either IVIG or Plasmapherises (PP). While the doctors are waiting for your daughter to tumble over and be unable to get back up, her immune system is attacking the myelin sheaths of her nerves. The more damage done to the myelin sheaths, the more residual effects she will experience, possibly for the rest of her life. These residual effects include fatigue in about 85% of all cases, pain, creepy sensations, and weakness. Furthermore, the immune systems attack on the myelin sheaths can and will cause at least some axonal damage to nerves. Most axonal damage is so minor you wouldn’t notice it, but some are left with permanent paralysis.
Your daughter’s doctors are refusing to give treatment for one and only one reason. Both IVIG and PP are very expensive. They cost in the tens of thousands of dollars. Is a life time of fatigue or pain worth 20 to 30,000 dollars? I don’t think so.
Your daughter deserves competent medical attention. I hope you will find new doctors immediately. By immediately, I mean right now. Time is myelin. You can always talk to attorneys later, but the important thing is to make sure your daughter is safe.
AnonymousJuly 15, 2006 at 3:03 pm
If your daughter is getting any worse, even incrementally, then her immune system is still attacking her nerves. If she isn’t getting any worse then the acute stage of GBS may be over and IVIG won’t do anything for her. The acute stage usually doesn’t last more than 21 days, but there are exceptions.
One other thing, often times, the difference between a severe and a mild case of GBS is in how long it goes untreated.
AnonymousJuly 17, 2006 at 2:17 pm
I’m surprised nobody mentioned that GBS can’t be diagnosed in one hour’s time. It can be suspected, later confirmed, but mine, when the ER doc suspected GBS, got a positive spinal tap reading, wasn’t official for two weeks after. After all the tests came back. The quickest confirmation was 3 days that I’ve ever seen or read about. Might explain the 3 day stay with no treatments offered. If GBS is suspected, then getting in for observation is number one priority. As other blood tests and MRI’s come in, NCT tests are done, as they observe the patient, over those days, and if things were getting worse, or even suspected, I bet the docs would have treated her. Regardless. So, I’d say the docs saw something, or the tests showed them something, to get off the trail of GBS. Back to scratching their collective heads. Many diseases with like symptons. Could be she had what I term, a catch and release bout of GBS. Or mild case to the degree that the immune system handled things in-house. Ask your doctor to preform a NCT and a f-wave test to confirm or deny mylin deterioration has or has not taken place. The only reason for a doc to not do these tests, is because it’s not GBS, or an autoimmune disease that produces those kind of symptons. Get them engaged again, and pin them down. The time frame you describe, from first symptons, does put her in the onset time, or text book time all symptons and tests an observations should point to GBS’s way, so I think you have a highly rated suspect, but I think the doctors might be thinking something else. When having no answers, GBS works with the best, as something to point to. It’s real importent to get it right the first time for obvious reasons mentioned in above posts. I hope relief is found soon. Keep us posted.
AnonymousJuly 25, 2006 at 6:16 pm
My daughter was dx with gbs about 2 weeks ago, the dr. just called and said her lyme disease test came back positive. My ? is why was her protien level high if it was lyme (it was 90, we were told normal was 40) the dr. set an appt. to see her in 6 days , I would think they would want to see her right away, all her symptoms point to gbs, very few suggests lyme, can the lyme test be wrong?
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