Is there room around here for one more person?
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July 24, 2006 at 1:25 am
Hallo alle,
I found this forum after days of searching for info on GBS and I’m so happy that I did. The stories and info around here has been wonderful and reassuring while at the same time keeping things in perspective.
Here’s my story and a little about me:
About labor day a year ago I started feeling horribly ill. At first I just chalked it up to the well deserved hangover that I had after partying non-stop for a couple of days. After about my 5th day of almost cronic vomiting I went to the ER. That trip led to me going on short term disability from work and consulting with my PCP and a specialist since my liver enzymes were way out of wack. I used to be a heavy drinker so we chalked things up to the booze and beer. I went off the sauce and things got a bit better for me. I had been sober from October of last through March of this year and the vomiting and diarhea was gone.
Around the beginning of March I noticed a twinge/numbness/coldness/burning shooting pain/…etc in my left big toe. Within the day it had moved to the main joint of my big toe. By the next day or two both of my feet were consumed in some of the worst pain I’ve ever felt. I made mention of it to my mother, a retired doc, and she said it was probably gout since I had grown to be quite fat and lazy during the time of my previous illness. About a week before my toes started to hurt I did have a pretty good case of what I thought was the flu. She said she would come visit and look me over. She never had a chance as I was soon sitting in my bedroom w/ a racing heart and chest pains, pain/numbness in my entire body so off to the ER I went. They kept me overnight and told me I was having a panic attack. None of the doc’s listened to my complaints of the pain, they were just worried about my heart. Unfortunately they released me early and I was soon taking an ambulance back for another visit.
By that time I could barely walk. My PCP sent me to get an ultrasound on my legs to make sure blood was circulating properly. I asked about GBS as I had just heard about it from a member of the main internet board I participate in. She immediately dismissed it b/c I never got to the paralyzed state but said that once I got back from a trip to CA she would give me a full physical.
I never made it back to KS from CA. Lots of things worked my way and I ended up missing my flight back home and didn’t have enough money to get another ticket so there I was, in pain and stuck in CA lol. Anyway, I ended up going to the hospital twice within a couple of days b/c of the leg/foot pain as well to find out why it had once again returned to my upper body (I’m guessing relapse of some kind.) The 3rd doctor I saw immediately said that my foot pain was because of my prior drinking (even though I was off the sauce) but suggested if things aren’t better in a few weeks to see a neurologist. My insurance had just expired so I didn’t go to another doc right away. That visit to the ER cost me 13grand and I really didn’t want to get in much more medical debt.
Today I had to go to the ER again. This time I went to the Ventura County Health Center. They are mostly for us poor folk and those of us w/out insurance. The doc there isn’t convinced this is GBS again b/c I never got paralyzed but I get to go see a neurologist who supposedly knows a lot about GBS and other neuropathies in a couple of days to see what’s going on. I know better than to try and self diagnose myself, but other than the paralasys, my symptoms have pretty much matched what you all have gone through. I hope too much time hasn’t elapsed and I’m stuck living like this for the rest of my life. I can’t live like this. 3 months ago I was able to take my dog for 5 mile walks every day. Today I can hardly get in and out of a car, let alone walk 500ft w/out needing to stop and rest.
The positive attitudes around here are absolutely spectacular. I don’t know how you all keep your heads up and remain smiling while dealing with this. Many kudos to you for posessing such admirable attributes. This has happened to me at the worst time as this trip to CA was to be for me to finally get out of the midwest and to live where I have wanted to for years now and to restart my life over away from everyone and everything I have known. Now that’s on hold and I’m getting on a train back to KS to move in with my folks while whatever this is gets taken care of. It’s not easy for me at my age (29) to be realizing that I’m going back home, I’m not able to be independent anymore and I could be like this forever but I do strive to learn from you all and learn how I too can keep my head up.
Anyway, that’s my story. I apologize for the length. I tend to get to rambling on every now and again. Anyway, take care and I hope y’all will allow me to hang around these parts.
Cheers for now,
Ben -
July 24, 2006 at 6:02 am
Hello Ben what you got in March may have been a mild case of GBS or a CIDP a chronic version of GBS. If it is CIDP have the Neurologist do a spinal tap to check protein levels if it’s high then that would be an indecation also ask the Neuro to do a nerve conducting test. I have a mild case of CIDP and my protein levels were normal I also had a nerve biopsy and it showed up normal but it was the nerve conducting test that showed my Neuro that I had CIDP. For the pain take Gabapentin/Neurontin up to 5400 mg a day or Lyrica etc… it’s good for the nerve pain and zaps. It’s very important that you rest. You may feel like your getting worse but it maybe because you over did it. People will tell you here rest rest rest is very important. I still work but I don’t have the strength I once had and get tired so much easier. Other member know more then I do will help you more.
GBS stops getting worse by week #8 and if you are getting worse after 8 weeks it may be CIDP.Sue
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July 24, 2006 at 6:51 am
hi ben & welcome,
ditto sue. the 2 tests to confirm gbs or cidp [chronic gbs] are the emg/ncv & a lumbar puncture looking for a protein count over 45. take care. be well.
gene gbs 8-99
in numbers there is strength -
July 24, 2006 at 7:17 am
Welcome, Ben. There are those who have mild cases of GBS or CIDP. Some even still walk. Maybe not as far or as fast or coordinated as before. Thank you for sharing your story. This site is a great place to get ideas, and ask questions.
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July 24, 2006 at 9:58 am
Hello Ben,
Welcome to your new family. There’s room for as many people who come here. I have to agree with what the other’s said, have a doctor do the tests to find out if you have CIDP. I have CIDP and I was never paralyzed, so that doesn’t always happen. I mainly have a “heck” (I’m a lady 🙂 of alot of numbness, tingling and prickling. If you wander into our TAVERN on this site, we’ll serve you MILK. -
July 24, 2006 at 9:30 pm
Thanks, all. I appreciate it. One quick question…when they do these nerve tests and stuff, do they hurt? I have enough of a problem letting someone touch my feet, let alone start poking and prodding and electrocuting them or what not. 🙂
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July 24, 2006 at 10:31 pm
Hi Ben, welcome to the family. the tests feel alittle twinge of a zap. i have had 8 in the last almost year in aug. i have had 4 paralysis events in that time period. you do need to rest alot, whenever your body says to rest you rest. all else can wait until another time. do get the tests done-they don’t hurt, its just a smidge uncomfortable for a few minutes. they are important, they can help in getting a diagnosis and treatments. take care. keep a positive attitude, it will help you through those hard times.:)
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July 24, 2006 at 10:57 pm
[QUOTE=angel2ndclass22699]Hi Ben, welcome to the family. the tests feel alittle twinge of a zap. i have had 8 in the last almost year in aug. i have had 4 paralysis events in that time period. you do need to rest alot, whenever your body says to rest you rest. all else can wait until another time. do get the tests done-they don’t hurt, its just a smidge uncomfortable for a few minutes. they are important, they can help in getting a diagnosis and treatments. take care. keep a positive attitude, it will help you through those hard times.:)[/QUOTE]
I was hoping to hear it was more of an uncomfortable twinge sort of thing. From my experience so far the docs don’t like to warn me first and I’d feel just horrible if a reflex came back and they got kicked in the face w/ a limp noodle! 🙂I feel you on the rest. I’m exausted after today. I spent the better part of 8 hours driving all over Oxnard and Ventura, CA between trying to get an earlier appt than 7 Aug just to get the referral for the Neurologist, trying to apply for Medi-Cal, trying to get job apps in. It’s probably not a great time for me to be trying to work but CA is expensive and I need money to get out of this house within the next 2 weeks. Funny how when it rains it pours isn’t it?
Strangely, after the initial pains and having to drag my legs around, I started feeling a little bit better. I don’t know if it was just endorphines kicking in or if it was just having something else to think about besides all the “what-ifs” but it was kind of refreshing. I do have to say that finally being able to take off my shoes was about as pleasing as losing my virginity though. 😀
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July 24, 2006 at 11:00 pm
Hello Ben,
I have had EMG’s and NCV’s and you do feel them, but they ARE something you can tolerate, so try to convince yourself to have them done. I think it helps if you ask the doctor or whoever does the test to let you know when the test is almost over. -
July 25, 2006 at 5:57 pm
Just a small question: I’m courious to know why you greeted us all the first time with “Hallo alle” – sounds very Scandinavian to me, am I right:D ?
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July 25, 2006 at 7:03 pm
[quote=Allaug]Just a small question: I’m courious to know why you greeted us all the first time with “Hallo alle” – sounds very Scandinavian to me, am I right:D ?[/quote]
Nope. I’m actually Cherokee Indian from Oklahoma. I grew up around German speakers and I lived in Germany for a year. Since I use “Jever” as my screen name I find it a fitting introduction based on my past and that Jever is a German bier that I fell in love with when I was over there. It tastes a lot like Heineken would if the brewers at their brewery knew how to make good beer. How they managed to make a beer worse than Budweiser I’ll never know. 😮 (no offense Heine and/or Bud lovers.) 🙂
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