Rheumatologist here I come.

ali, you have someones to talk to!! i’m usually online at various times throughout the day, my modem is always on.:) go in with an open mind and a positive attitude and don’t take the crap from any dr. they are human and are always learning themselves–educate them if you must. i know how you feel, i’ve been going thru it for awhile myself, with more drs then i can count. you know what you are feeling, tell them what you think is going on-it might just be the kick in the butt they need to get them doing research. take care. cry everyday if you need to, i did, and still do somedays.:) keep us posted on how it goes.

Hello Ali,

I have just read your message and I have sent you an answer – or at least I think I have. Maybe you should check it out? I hope everything goes well today.

Take care

Anneli

Ali,

Please call me when you get done with your appointment, I will be home all day. Let me know if you need my number. Hang in there.

Jer

[quote=ali][FONT=Comic Sans MS]Dear Friends,[/FONT]

[FONT=Comic Sans MS]Tomorrow morning I will be seeing a Rheumatologist to see if I can finally get some answers. I have printed out a few threads that I found from the old forum, and I have the article to print from Dr. [I]Kleopa,[/I] but unfortunately the printer has decided to play up. In any case, after my visit to the neurologist last year, where she clearly said that if I had GBS 20 years ago, I wouldnt have any risiduals like fatigue, or for that matter, have any problems related to GBS whatsoever now. [/FONT]

[FONT=Comic Sans MS]Because of the doctors lack of interest (to put it mildly) I have diagnosed myself with post GBS because of my symptoms, and of course the posts and discussions with others who are going through the same as I am. To say I’m a little scared and extremely wary of going is an understatement. I am so hesitant to seek medical help anymore, and are so distrustful of doctors that I think if I leave feeling as I have leaving the neurologist or sometimes our doctors office, alternative medicine is my next option. [B]I want to be a healthy, happy and vibrant person, and not a moaning lame duck![/B] But somehow I feel that a lot of doctors are suspicious of our motives when we see them. Why would ANYONE want to feel like this is beyond me. If I leave the Rheumatologists office tomorrow feeling like I did leaving the neurologists, I really dont know what I will do. My 4 year old son will be with me and my husband is in California and I just wish I had someone at home to talk to when I come back from the appointment. In many ways I am optimistic about seeing him, but what if ……..? Sorry about the moan, just had a good cry, and it was quite good to get it off my chest.[/FONT][/quote]

Ali,

You have us to talk to. If you want send an e-mail even if it’s just to vent,
I am here for you, you know that. 🙂

I’m sending good thoughts and prayers your way. 🙂
Love YA

Hi. I’m new to the forum. I survived GBS 2001. I ran a search for “post GBS” and “post-GBS” on this site and found nothing.
Can anyone please direct me towards info regarding long-term effects. I recall some studies from my 2001 ordeal but could sure use some help now.
Doctors in my area are at a total loss ~ acute or bust. . . with exception of PT’s but I’m sure everyone knows the limitations of PT’s.
Thanks!

don’t let the doctors get you down. we know our bodies better than anyone and know whether we have residuals or not. you can have completely normal tests and still be suffering from some pretty strong after affects. keep a postive attitude and know that we are all here for you. I’m also willing to pass along my phone numbers if you ever need someone to call. we are all family.

take care

sherry price
southeastern ohio liasion

hi salsera & welcome,

2 things come to mind;

* although little study has been done, it seems some gbsers get post polio like symptoms. also at some later date after gbs our residuals can come back stronger.

* re: pain/fatigue [url]http://www.gbs-cidp.org/forums/showthread.php?t=40&highlight=rebuild[/url]

take care. be well.
gene gbs 8-99
in numbers there is strength

Ali,

I am glad you found a Dr. who will take you seriously and run some tests to find out what is going on. Call me anytime and I mean that. Take care of yourself.

Jer

Dear Ali
How I feel for you my friend. It seems we are both going down the same road, though for me I can at least rest when I want as my children are all grown up. It must be so hard when you have a young family to care for.

As you know I had GBS in 1968 then some sort of relapse in 2000/2001. My doctor had not idea what was going on so sent me to see a neurologist. He firmly believed in there being a “post gbs syndrome” and said that was what he thought I had. Trouble is though I believed him, I still kept on questioning why this had suddenly happened, and why am I getting no better.
In the last 6 months the fatigue and pain has got worse, so another trip to the doctors, bloods done and then she said I had fibromyalga. Then she said she wanted to put me antidepressants. So it seems you are going down the same route. Some days are better than others for me, I can always tell the minute I get out of bed how the day will go.

What I really wish for is to see a neurologist who has experience of long time gbser’s, who like us are having problems many years after intial attack. Like you Ali I have started losing faith in my doctor as she tells me “there is nothing that can be done” and hands me out several scripts for painkillers etc. It would be fantastic to have this post gbs syndrome recognised like the post polio syndrome is. Everything is so much better with a proper title isen’t it? I am so fed up with people telling me “I look so well” when I’m feeling awful, in pain and so tired.

You mentioned homeopathy, I too have been down that road. Sorry to say I did not feel any better, but maybe it could work for you. Its worth a shot.

What I’m praying for is one day it will of burnt itself out, and I’ll feel like I did a few years ago, so until then I try and stay focused and positive!!

If you ever need to chat e-mail me and I’ll give you a call. We have to stick together!!

Love
Suzy

hi ali, the tests are to rule out all the other possible problems, if the tests come back normal, then a dx of fibromyalgia can be given. it does present itself just like post-gbs residuals in some ways, but there are a few differences. with fibro there are 28 tender points on the body, with post-gbs it is all over the body or sometimes just in parts (arms, hands, legs and so forth). i’ve had fibro for over 18 years now, it remits and flares up when ever it wants to and its a slightly different type of pain then what i get with gbs. fatigue wise for me its alittle different also, with gbs its noticeable with over doing things and its also there when not doing anything at all. with fibro it comes and goes, for example i could work and work and work with the pain and fatigue level always the same day after day. if i layed around i would get a higher amount of pain and fatigue until i got up and moved around, then it would go down to the usual level. if that makes sense. fibro is another type of autoimmune disease that has no cure and no test, there are meds that one can use to help control the level of pain, but they can make you drowsy during the day.
i’m glad you left the drs’ office with a better feeling, ali. i know that must feel like a load was taken off your shoulders. keep us informed and take it easy. you can come to my house and clean my deck for me if you feel ambitious!;)

Hi Ali,

I really related to your posts. Yesterday I had a good cry myself. I am very interested in your taking the new Cymbalta. I go to my doctor Monday with wanting to change my meds. With how we feel, depression is our middle name, oh but, another middle name can sometimes be denial. Don’t overdue yourself. You will pay big time later. I say this after I just did too much over the holiday weekend and it is going to be a few more days before I feel better. I tried Neurontin and it didn’t really help, then my neuro put me on an old, old medicine called Amitryptiline (?sp). I take it at night to help me sleep and it does help on the goofy pain symptoms. BUT, I gained 30 pounds since taking it for 3 years. So I want off that and off Paxil. Sounds like the Cymbalta may be for me. I hope. Of course, I have no idea what the pharmacy will be charging as with the crappy insurance we all have now (if any) these new meds aren’t covered very much.

So much about me… just remember, this is the place to vent and cry and moan, etc. We understand. Friends and family may have the best of intentions, but they just don’t understand when we ‘look’ fine but complain that we can’t do something with them.

Please keep us/me posted on your progress. And email me if you want.

hey kid,
glad you’re feeling better..and by the way…my deck could use it too.:D

sherry

Ali,

Hmmm… with this new system, I’m not sure if this will work. I’m trying to attach a picture of myself for you.

Here is a picture of me Ali, people say I am hairy but I think I am dead sexy.
[IMG]http://www.african-safari-journals.com/image-files/orangutan-pictures.jpg[/IMG]

You’re so cute Jer. 🙂

Yeah I know Ali, hopefully I made you smile 🙂

Donna 😮

Ali-
I wonder if your ANA test will come back positive like mine did. I am anxious to hear what the doc says. My Rhumetologist practically threw me out of her office telling me there was nothing wrong with me-and to rest if I’m tired and to continue excercising. All my blood work came back negative-except for that one test. I told you that I am in the 8% of the population that will test with positive titer levels-I wonder if you’ll test the same. I forget-do you have Raynauds?

I started a thread weeks ago about a positive ANA test-and I forget who answered me-but their tests also came back positive. The doctor said it was definitely from the GBS. Keep us up to date!

I hope the pills that you started are working!

-Stephanie

[FONT=Georgia][SIZE=3][COLOR=darkorchid]Awwwww! Look at Jer!!!!!! [B][U][I]Ain’t he just too cute???????? 😀 [/I][/U][/B][/COLOR][/SIZE][/FONT]

Hi, Ali-

I’m sure you’re going to get that test because it tests for auto-immune diseases. Raynaud’s is that condition that turns your fingers and toes white when you are cold. I have it-it’s awful. I could be holding a cold drink-and my fingers will turn white-and then I can’t feel them. It’s mostly just annoying.

I really thought I had Lupus for awhile…..but thankfully, like I said-the Dr. said I was fine. I opted for no more further testing because my major ones came back negative. She said we could continue on….but I said no.

So, that’s the scoop. I can’t take the rain anymore!!!! I’m ready to hang myself!!! 🙂