The Vexed question of residuals in Guillain Barre Syndrome

I am constantly having either new residuals pop up or old ones flare up. I have just started having cramping in my left hand again. I haven’t had that problem in a couple of years.

The neuro says that this is actually very common and not to worry about it. Of course, my question is; why has it started again now? His answer: I don’t know… Just what your looking for from a doc…:(

Jim

Thank you John. I found it very interesting and passed it on to some people who I know will find it informative.

Thanks for the article. I have just finished reading it and I copied and pasted it to my private collection of Very Helpful Texts! Really nice to know there are medical specialists who are really empathic as well.

Hey Jim, I know what you mean, but maybe you should be glad your neurologist admits he doesn’t know, and doesn’t make something up;) . Of course, the next logical step for him would be to read articles like this one!

It is amazing how comforting reading such an article is – I am not crazy about how I feel! I also searched this web site (in English) and found it very interesting. I plan to share this article for my PCP to educate him more. Thanks so much!

[QUOTE=Jfitzen]The Vexed question of residuals in Guillain Barre Syndrome
Lawrence Kaplan and Robert J. Gregory

Article reprinted with permission from Kai Tiaki Nursing New Zealand Journal. First published August 2004 (vol 10, no 7).

Discusses some interesting insights to previous articles published regarding GBS residuals…

See the following link:

[url]http://www.jsmarcussen.com/gbs/print/residual3.htm[/url] (cut and paste)[/QUOTE]
Chrrisy:
Could you please send me the article on the above. My e-mail is [email]franko@ellijay.com[/email]. I cannot seem to find the link but I am not too good on a computer. Let me know. thanks frank

Frank, I have sent the article to you!

I tried to post it here, but it is too long to post. If anyone else needs, it just let me know.

Oops I sent it to you also Frank, didn’t see Chrissy’s response.

Jerimy

I have seen this article before but good to have it available again. I sent it to my primary care doctor who always asks me how I am and if I have more stamina. I get tired to trying to explain so hope this article will help. Part of my residuals is, if I get very fatigued, I run a low grade fever and can hardly get out of bed for days until I am recovered. I wonder if others run fevers with residuals. The most discouraging thing is that my residuals seem to get worse with time instead of better, including now symptoms of carpal tunnel in both hands from elbow down. Last time I saw my neurologist he said I needn’t come back any more as there was nothing he could do for the residuals and just stay on my meds for another year and see how I was doing. Very encouraging. Best to all of you and happy holidays, Jeff

Jeff,

I too run a low grade fever. I’ve also had high white blood counts for years and even went to a hematologist – don’t know why the high wbc. My insurance keeps changing and will need to find a new neuro, but I too think they don’t want to mess with us – there are others that are way worse off than us, but it is a shame. So, I plan on keeping my PCP educated as he is very open and understanding. I always seem to making it through life on not quite a full tank, even though others cannot see that. Hang in there!

Jeff,

Just wondering how long ago you had GBS? My fiance Ben is almost two years out, and he was getting weaker for about a month and is now getting stronger again. A few months ago, he was diagnosed with carpal tunnel in both wrists and had one set of cortisone shots. He hasn’t complained about any carpal tunnel symptoms since he had the shots; however, he was just recently diagnosed with having migraines. It’s just one thing after another, it seems.

Feel better!

Shannon

Hi Shannon: I fell ill May 2005, so about a year and a half out. I too have carpel tunnel in both wrists, from elbows to hands, though my neuro told me it was impossible to know if this was a residual from GBS or actually Carpel Tunnel-I found wearing braces on both hands helped a lot with the pain. I have enjoyed reading your posts in the forum and hope things go well for both of you.

Chrissy-interesting to hear you have fevers too. My primary care doctor is a gem but knows little about GBS. When I sent her the article about residuals she thanked me and told me it was very educational for her and she wants to schedule a visit to just talk about residuals and how I cope. That is great relief -having a doctor actually open to learning and working with you. She ordered an ultra sound of my liver because of the fevers and will do an MRI if they come back, but she wonders if the original virus that caused my GBS is not still in my body and just comes out from time to time. Not a cheery thought. I guess I will always be afraid when the fevers start of relapsing, but it seems just to increase my fatigue a lot. Best to all, Jeff

Jeff,

Thank you for the kind words. I enjoy reading your posts too. Ben’s neurologist basically said the same thing when I asked if the carpal tunnel issues were a result of GBS. He said there was just no way to tell. I also posed that question to the doctor who gave him the cortisone shots, and he was very doubtful, saying he had never heard of a link before. Since I’ve lived with Ben for seven years and am very familiar with his medical history, I’m almost certain the carpal tunnel and the migraines both started as a result of GBS.

Shannon

Hi Shannon: Yes I bet there is a connection. My neurologist basically said I would be prone to pinched nerves anywhere in my body now and had to be careful how I sat or put weight on my body, even how I held a book. I am glad not to have migraines-they are doing a lot of research on the brain and migraines and hopefully will come up with something soon that helps. Jeff

Jeff,

That’s very interesting to know. I’ll have to remember to pass that on to Ben, who’s sleeping right now. After almost two years, he still says he doesn’t understand why he gets so tired. I always have to remind him he has residuals.

Shannon

I drive my wife crazy because every day I say something profound like I can’t believe I napped for an hour and a half, even though I need to do that daily. She still reminds me about residuals and it has turned into a joke now, but perhaps it is something of the male ego that finds it hard to accept such limitations. Best to Ben. Jeff

Since you and Ben have been going through this for about the same amount of time, I’m sure you’re both still figuring out what your limitations are and when you can push the boundaries. I try to give him enough space to do what he feels he can do, but I also have to constantly remind him not to overdo it. As his caregiver, it’s a balancing act. I don’t want to baby him too much, but I also don’t want to see him hurt himself. I’m sure your wife can relate!

Thanks for the article. It’s sometimes difficult to explain to doctors who have little or no experience of GBS & how a Mom knows something is wrong. Although Brandy is 7 years post her GBS episode and recovered remarkably when she is stressed (a college student) and or exhausted her residuals kick in. When really run down, she falls and her legs stop working. Thankfully her room mates are aware of her medical history and so was her color guard director. When Brandy gets to this point, she dehydrates and then needs IV fluids. Brandy wears a medical bracelet “just in case”.
Unlike Ben, Brandy’s migraines were the beginning of GBS and thankfully have lessened in reoccurance although when they come on she takes Fioricet which does help.

Chrissy or Jerimy, would you please e-mail the residuals article to me at [email]pshinz87@yahoo.com[/email] Thanks, I don’t know how the rest of you access it.

Peggy

I emailed it to you Peggy, let me know if you have any problems or need me to resend it.

Jerimy