GBS but not typical onset
AnonymousNovember 30, 2012 at 2:50 am
I wanted to share my recent experience with GBS and see if my onset was similar to anyone else. For me it started in September when I started noticing that I had problems lifting my legs. I could still walk, in fact I could still walk our 100 lb golden retriever, but getting dressed is when I noticed the weakness when lifting my legs. But in mid October on one Friday I took the dog for walk and just could not keep up, my legs felt like rubber. On Saturday I felt worse and could only hobble around, barely get up the stairs or get out of a chair and in quite a bit of pain. Went to my family doc on Monday when he pointed out I had no reflexes and needed to see a neurologist. The following week that neurologist sent me to a muscular neurologist who immediately suspected GBS. He diagnosed it after an emg and a spinal tap.
I never had problems with my upper body, but the neurologist easily demonstrated how my arms were weak. Never had problems breathing and had only mild tingling in my fingers, unlike my feet. I’m getting plasmapherisis treatments at my neurologist, after getting a central line catheter (which I hate!). I’m 4 treatments in and I think I’m feeling better. I still need a cane but I can manage to get out of a chair a little easier today. I know many people with GBS have a much more difficult experience but it’s been a stressful couple of months going from being in good health to now relying on a cane. Thanks for reading.
November 30, 2012 at 4:44 pm
Why do you call it atypical? Plasma exchange is a good treatment, and you should be glad you have had it made available to you so early. Early treatment generally means better recovery. If you have a mild case, avoid losing the use of your arms and needing a ventilator to breath, and make a good recovery, you should consider yourself fortunate.
As for the central line (PICC?), I had a Quinton catheter in my groin for three weeks, and a PICC line for longer than that at the same time. Your situation doesn’t sound so difficult to me.
AnonymousJanuary 18, 2013 at 2:57 pm
Welcome to the GBS family. It’s always great to hear other peoples experiences. I understand what you are saying that it wasn’t typical by meaning that it didn’t affect you like some of the others. Sounds like you have a great doctor and medical care. Enjoy this site and the people you will meet.
AnonymousJanuary 25, 2013 at 2:03 pm
Thank you for the kind words. It’s interesting, it was one of my neurologists that called my situation non typical. I think what he meant was that he said they don’t do plasmapheresis often in their office for many GBS patients, usually they see them in the hospital. My neurologist had a suspicion from the beginning that I might actually have CIDP because of the slower progression of my problems. Sure enough even though I initially responded to the plasmapheresis a few weeks later I started getting worse. So he now diagnosed me with CIDP and I have started IVig treatments. I’m also going to physical therapy now, been fitted for ankle orthotics, and I have to use a walker now instead of a cane. But I’m trying as best I can to stay positive.
January 25, 2013 at 6:42 pm
My diagnosis is also CIDP, after an initial diagnosis of GBS. For me, IvIg was not much help, and it was the in-hospital plasma exchange treatments on which I relied. I’ve often wondered how outpatient plasma exchange differs from inpatient.
Physical therapy directed at recovery of strength is only effective when the progression of the disease has been halted and the nerves are healing. That’s my experience. If you are continuing to lose strength, as evidenced by your need for a walker, PT isn’t going to turn that around. Arresting the progression of the disease is the first priority.
January 26, 2013 at 1:36 am
sounds like you are staying quite positive 🙂 Seems like a lot of cidp’s are labeled “atypical” mine was too. I had the cental cath in my neck for P/E—–that was joyous!! What a relief though when they finally take it out. Lori
January 28, 2013 at 6:27 am
Your onset sounds very similar to my husband. He went downhill for about 6 months. At that point in time, he started getting better. It has now been 2 years since the onset. He just walked a half marathon in December. He did wear his midweight AFO’s. But, he walked a total of about 16 miles that evening.
He is skiing every weekend. Not as good as he did before, but he came home tonight and said, “I skiied great today”
Have faith the other side will come! Feel free to email me if you want to talk with him. patty(remove this portion)@nsnw(and this portion).us
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