Hi I'm new and would like some help please
AnonymousMarch 13, 2013 at 12:00 am
Just a bit of background info first.
I am in Australia, I first had GBS 24 years ago as a teenager. It was a fairly bad case, and I was in intensive care for approx. 4 weeks, not able to walk for 6 months, and had chronic lower back pain and leg weakness for 13 years. I had since fully recovered accept for having lowered stamina. Back then there was no treatment for GBS. They just kept me alive and then sent me home to recover. It was entirely up to me to rehabilitate myself.
Just before Christmas this year, I started getting bad stabbing pains in my shoulders, which also affected my breathing. I could not take any deep breaths. Each time I presented to the Emergency Dept. they suspected I was having a heart attach. I was also having a pain under my right rib cage, that feels like someone has shoved a tennis ball up there. (It is my suspicion now, that these are two separate issues, I also have a number of lesions on my liver)
The pain in my shoulders and back increased to the point where it was debilitating. My specialist referred me to a pain clinician, but it has taken me 3 months to get in to see him. He suspects it is GBS that is causing the issues. I suppose I am confused because this is not presenting at all like my first encounter with GBS.
My legs are fine, my lower back is fine. It is mainly nerve pain on my back from about half way up to the top of my shoulders. I often get pain that originates in my back but comes through my body into my chest if that makes sense. Although my arms feel weak and driving for more than 10 minutes increases the pain, I would not say that they are particularly weak. There is some minor pin prick pain in my arm pits and a little lower on my arms, around the time I am due to take my medication each night.
My original specialist put me on a neuro pathic drug to stop the pain, which has certainly helped, and the pain specialist has also given me a script to get a drug that is commonly used for epilepsy to stop the neurons misinterpreting the signals as pain.
I am booked for a MRI in mid April.
So I suppose I am wondering if anybody has had GBS flare up like this again, after so many years? Has anyone else had this kind of presentation? Should I be getting treatment for the GBS rather than just treating the pain symptoms?
I do trust this specialist. Apparently the region I live in has more incidences on GBS than any other in the world. So he should know what he is doing. But I am happy to follow up if I need to.
I am really confused and really don’t want this to develop further as it did when I was young.
I hope my post makes sense, and appreciate any advice 🙂
March 13, 2013 at 2:45 am
If you are not getting progressively weaker in the legs, I don’t know why your specialist would think it might be GBS. GBS treatments are aimed at minimizing the demyelination of the nerves. But getting an MRI sounds like the right approach. I would avoid fixating on the possibility of a return of GBS, and just try to understand your new symptoms with an open mind.
April 22, 2013 at 3:17 am
My husband had a variant of GBS in 2010 which was not at first diagnosed as it is a small fibre variant . He had 5 days of IVIG in New Jersey ( we live in Canada but could not get treated here). He has since had 1 relapse episode in Aug 2011 and currently is having a third. The pain he is having in his shoulders is very similar to your description. I disagree with GH and believe it definitly can be a relapse of GBS .You should be seeking treatment for it. It is very hard to get futher IVIG here in Canada but we are pushing for it . Keep on trying in Austrailia. 🙂
April 22, 2013 at 4:02 am
Ottawa help, I did not write that this could not be a relapse of GBS. I advised LeeB to keep an open mind. Neither of us (I assume) is a neurologist, and in any case no one can diagnose a problem remotely. An illness cannot be treated effectively until it is diagnosed.
AnonymousApril 22, 2013 at 2:24 pm
In your original post, you mentioned that you have lesions on your liver. Now, I am not saying that this could not be related to GBS, as the previous posters noted, we are not physicians. BUT, through my own educational background, I am aware that internal organs have pain referral patterns. The liver can refer pain to the shoulder and shoulder blade region and should be taken very seriously. I fully recommend following up with the MRI but also seeing the doctor who is seeing you for the lesions on your liver.
Best of luck to you in your search for answers and help.
AnonymousApril 26, 2013 at 5:36 am
Hi!LeeB,nice to know about your some brief resuam!And also very sorry about your encounter!but I think you will surmount difficultis!
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