Has Anyone Experienced Or Heard Of
AnonymousOctober 21, 2010 at 4:30 pm
Went to neuro on mon. 10-18, we talked & he checked reflexes & of course dont have any. Then he used turning fork on both shins above my braces & on a knuckle on each hand, I was unable to feel this vibration & he hit the tuning fork hard.My neuro has been a dr for a good while he about 55 maybe a little older. He is at our hospital, but he also goes to a metropolitian area as well. He told me that I was the worst case he has ever had, & he thought I would never get out of bed, BUT I DID !! he was a bit puzzeled by the severe sensory loss that I have. I was wanting to know if anyone has severe sensory loss & if you do what is your diagnosis ? Last year I went up to case western university hospital for an exam , & had some other test done , I was told I have axonal damage. & my other tests were neg. thank god ! He asked if I wanted to go down to columbus to see another dr. The dr at university thought I was poisened & wished he seen me when I was sick.
However when I was sick I had 5 plasmapharesis tx done. It saved me from death ! But I was left with disabilities. It has been nearly 4 years now since dx. & just about a week away from when I first fell, I did that on halloween.
In need of knowing if this problem is part of GBS ! The DR could be thinking there is something else goin on also.
All imput is apprieciated.
AnonymousOctober 21, 2010 at 8:15 pm
Yes, sensory loss can be a part of GBS. I believe it is included under one of the subtypes of GBS. Not 100% sure. I know the foundation has a lot of current information on all the different varients of GBS. If I were you, I would research it on the foundations homepage and print out the pertaining info, if you can, and give it to your neuro. There are so many different presentations, symptoms, residuls, and just stupid random stuff with GBS. The nueros just don’t or haven’t seen it all.
Are you still seeing improvements? Even tiny ones? They are all good and are reasons for celebration. For example, if yesterday you were not aware of feeling the carpet under you feet, but today you felt SOMETHING, anything at all, THAT is an improvement. Even if you couldn’t identify exactly what it was you were feeling. The fact that you FELT at all is improvement.
I remember there being days when I suddenly realized that something had improved and I had just noticed. It is a bit unnerving to realize that something got better and I didn’t realize it right away.
Good luck and God bless,
AnonymousOctober 22, 2010 at 12:41 am
I doubt that your doctor really thinks that there is something else going on, & what does he mean by stating that you were the worst case he had ever seen? I wonder sometimes when these neuros are always telling people that they are the worst cases; when I was staying at Mayo, they kept telling me that I was the worst case of CIDP that they had ever seen. At the same time, I had a roommate with CIDP who was just as bad as I was, go figure. It is also time that they quit telling people that 85% of people with GBS make a complete recovery, as the latest newsletter states very clearly that even the best cases usually end up suffering from fatigue.
I am assuming that you were completely paralyzed & on a vent? Not all that unusual for GBS really, actually a pretty classic case of AIDP. Right now one of my classmates is down in Duluth, MN completely paralyzed & on a vent, they are telling her she should make a good recovery. I sure hope they are right as they have the entire family convinced of it. I have another classmate who had the same thing & did recover in about 6 months, a very good recovery. But having spent the past 8years on the forum, I can tell you that there are many out there who had GBS & were left with significant residuals.
AnonymousOctober 23, 2010 at 4:39 pm
I am in the 20 0/0 group that will not make a full recovery. Learning to accept this. I walk with arm cuff crutches if to far I use wheelchair. I also wear braces on both feet , to prevent lateral bend I also have drop foot on both , but worse on left. Must type with pencil. I use my eyes for every thing I do. I have problems with my propreoperception, as well as severe sensory loss, & balance issues. I have trouble feeling the diffence between wet & cold. To much cold starts to burn & hurt. A little bit of heat I used to be able to tolerate pre GBS, now feels extremely hot. I cannot walk barefoot or even sometimes in slippers because it feels as if there is broken glass on floor , even sometimes with shoes on. & sometimes in shower .No one can touch my feet , when I dry them it is very PAINFUL. & when the DR exams them it feels as if he sliced my whole foot open, same with on back. My legs Get numb & very tingly at times, I pick something up I drop it.This has been like this since day 1.
I was paralizes legs trunk arms, I was very blessed that it had stopped just at my diaphram so no need for vent, however I remember them saying we need to keep an eye on her breathing. I had 5 rounds of plasmapharesis over 10 days got that just in time or I would be gone.
AnonymousOctober 27, 2010 at 9:12 pm
I am very familiar with sensory issues. I just saw a neuro today (at a free clinic) and he was so very wonderful with his exam and explaining. I still (and probably wont ever) have any reflexes. I too started falling last year – in fact last Halloween I fell sideways and really crunched my ankle. I fall with the foot drop on my left foot. The doc told me to keep using a cane. We do have to be very careful of water temperature. My left side is also worse than my right so I use my right hand to test the water.
I was pretty surprised when he said the nerve damage I have is pretty severe and none of this will not change – only get worse as I age. I’m now 53 and my body is probably 10 years older. I am also having memory issues and such which is all related to being older – really sucks! In my mind, I am still 27.
One thing he did diagnose me with that is new is lympedema as my feet and ankles get very swollen. He instructed me to always wear compression socks. Also diuretcs will not help this at all. He also said what the painful ice cold feet at night condition is called but I cannot remember it. I may call the clinic and ask them to look at my chart. But there is nothing to help this.
We have to hang in there together! I’ve been venting here for many, many years and want to support everyone in our GBS family.
Blessings to you!
AnonymousOctober 28, 2010 at 3:58 pm
let me know what that painful ice cold feet feeling is..
In too get that but it can happen at any time Day or night. I have to wear braces in my shoes up to crew sock height& sometimes their just on fire.
My ankles & legs will swell I go to my family dr in 2 weeks i think I’ll mention that lymenedma to him.
not sure if that spelling is right. I’ll write it out right so i have it at the dr.
I take lyrica for one of my meds & 1 of the side effects of that is feet, ankles, & hands can swell.
thanks for info.
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