Can GBS Reoccur? I’m scared it is happening to me.
AnonymousMarch 5, 2007 at 10:45 pm
For the past 5 days I have been losing mobility in my right fingers. Today is worse and I can only type with one finger – last week I typed with 4. I was dx with GBS when I was 12 years old – that was 33 years ago!! I was left with paralysis in both hands to which I had tendon transplants to strengthen. Right hand was always noticable weaker than the left but it has never changed strength. Now I’m losing strength in right fingers just in the last 5 days. My primary care Dr. said that GBS [U]can [/U]reoccur in some people. Has it ever reoccured in anyone? I have an appt with a nerve specialist in the morning cause I don’t know what to do. What type of Drs specialize in GBS? I am in Portland, Oregon. What would you do?
Lori in Oregon
AnonymousMarch 5, 2007 at 11:35 pm
Dont panic until you finish reading (well, preferable dont panic at all)…… Yes, there is about a 3 – 5% chance of reacurance, and the main thing is that you AND your doc seem to be aware that this can happen, so you can look for further symptom progression. Neurologists generally specialize in neurological disorders, however some dont know anything about GBS, your primary may know more sometimes.
After 18 years, I too thought I was getting it again, and it turned out that my residuals were coming back with vengance! Did research, and found out that decades later, we can be affected by what is loosely called “Post GBS”. It doesnt get as bad as a reacurance, but we do get weaker, some days more so than others, pain sometimes comes into it, great fatigue etc.
BACK TO reacurance …… If you and/or your doc truly believe you are getting it again, a spinal tap could determine that the protein levels are high (sometimes it doesnt show however) and therefore probably GBS. Also see how your reflexes are doing. If they do find that you have it again, it is a very wise idea to speak to them about doing IVIg before any more damage is done, it is suggested that this is done as soon as possible!
Im sure I could write a ton more, just wanted you to know a little more. I came to this site wanting to know if one could get it again, and found so many answers here.
Please Let us know what happens
AnonymousMarch 5, 2007 at 11:37 pm
After 33 years I really doubt that your GBS is reocurring, I would guess that it is a residual of having the surgery done on your hands so many years ago. When we originally recover, sometimes our nerves reroute to gain back function; because of this, they are never really as strong as they once were before GBS. Have you been using them more than normal? Make sure to tell the doctor all about the hand surgery you had years ago, & not focus so much on the fear of a reocurrance of GBS…
AnonymousMarch 5, 2007 at 11:49 pm
Lori did mention only her fingers, so you are probably right if it is only affecting them.
Just wanted to point out that besides from Cheryl, possibly Tim (maybe I left one or two out) that have the relapsing / remitting kind (I think thats what they call it, Cheryl will know) , I know at least 3 cases where people have had it in their teens or early twenties and have had GBS reoccur in their 50’s. I know that this isnt sugar coating it, unfortunately it is an unpleasant fact.
AnonymousMarch 6, 2007 at 12:44 pm
Hi Lori, yes there is a slight chance of reoccurance of gbs, in my opinion what you are feeling sounds more like residuals. gbs relapsing/remitting type for me anyways reoccurs a few times a year, more often i have what i call partial paralysis events, these are usually brought on by over doing things, stress, and sometimes illnesses. it is more like residuals flaring, and my body yelling at me to rest-when i do i can do things again, but slower then before.
i hope your dr can get you squared away, do the lp, and if needed order ivig-if you had it before and had no problems with it, then it can’t hurt to give it a try to see if it will help you get function back in your hands/fingers. as far as recovery goes, my right side has been the weaker side since my first paralysis in aug 05. my leftside has stepped up to take on the tough stuff, whereas my rightside normally did it. and typing with 4 fingers is good-i wish i could do that-i’m still at the 2 finger stage. my daughter found a site online that she wants me to use-its a typing site, she is 13 and she is my hometeam! the site is pretty neat, it shows you how to type and has all kinds of typing games and even tells you what your typing score is.
if your symptoms continue to get worse, you could have cidp. cidp takes longer to show symptoms, and isn’t symetrical in appearance, like gbs is. keep us informed, and get plenty of rest and listen to your body. are you taking neurontin for the pain? take care.
AnonymousMarch 6, 2007 at 3:23 pm
Lori asked, “What would you do?”
I would do exactly what you are doing, you smart person! Hit the BBS here to gather info, go see a specialist and deal with your anxiety. You are on the ball and taking care of business.:D
Lori, any other symptoms of GBS>?? Also, have you had any residuals to deal with since you got sick 33 years ago?
AnonymousMarch 8, 2007 at 10:06 pm
I had a second occurence of GBS twenty years later which is almost the same amount of time that you mentioned in your life – 12 to 33. I did not have any residuals because back in 1986 I had a mild case. This year I got it a second time and it was much worse. But, looking on the bright side, the stress that I was under for the past 6 years brought mine on – I am sure.
It is rare for it to occur so I would not panic yet. Six months later I am now walking – although tentatively. I attribute my lack of residuals to the supplements that I am taking.
AnonymousMarch 12, 2007 at 3:37 am
Thank you everyone who have responded to my questions! It’s been 10 days since I began losing strength in my right hand and it is slowing down in its deterioration, but has not gotten better. I had an MRI on my neck to look for pinched nerves but it showed nothing. Then 3 days ago I had horrible nerve conduction tests and wow, my nerve mapping is all over the place because of the GBS. The specialists could not find any blockage or anything that would cause this. They told me to “wait and see what happens” – but I can’t wait and see what happens because what if the same thing happens to my left hand!
After my diag at 12 years I had residual loss of strength in both hands and loss of feeling on the left side from toes to hips. I had 5+ years of phy therapy, 5 hand surgeries to move tendons around to create an opposing motion in both thumbs.
tomorrow I want to look up a specialist for GBS, but what type of Dr do I look for? An endocronologist? Or something else? Please help me again…?
AnonymousMarch 12, 2007 at 9:39 am
[quote=ali]After 18 years, I too thought I was getting it again, and it turned out that my residuals were coming back with vengance! Did research, and found out that decades later, we can be affected by what is loosely called “Post GBS”. It doesnt get as bad as a reacurance, but we do get weaker, some days more so than others, pain sometimes comes into it, great fatigue etc.[/quote]
Based on this information, do you think it is [B][I]ever [/I][/B]possible to say someone is “fully recovered” from GBS???
AnonymousMarch 12, 2007 at 4:09 pm
from another gbser. I had real good experience with Dr. Cabasco with Northwest Neurologist out of Emanual Legacy Hospital in Portland. a neuromuscular doc is better than a neuro doc if neither have any gbs experience & all other things are equal. take care. be well.
gene gbs 8-99
in numbers there is strength
AnonymousMarch 12, 2007 at 4:26 pm
Lori, the type of doctor you need to see is a neurologist, and hopefully one that is knowledgeable about GBS. Don’t be afraid to ask him about his GBS experience, no point waisting time with a doc that can’t offer you any help. Of course, that’s my opinion. Having seen 2 neurologists before finding a third that actually knew about GBS, I’m just sharing my experience with you. :o)
Debbie in Miami
AnonymousMarch 15, 2007 at 11:14 pm
Hi Gene – thanks again for the reference for Dr. Cabasco, but just so you know, when I tried to locate him I was told by his former clinic that he had moved to Texas.:eek: I am still trying to locate a neuromuscular dr with GBS experience in the Portland Oregon area and I have contacted my local liason but haven’t heard back from them yet.
Thanks for your help,
You must be logged in to reply to this topic.