northernguitarguy
Your Replies
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August 13, 2011 at 8:56 pm
Hey Chrissy that’s sweet!
August 13, 2011 at 2:50 pm[COLOR=”Magenta”]’nope, nothing to see here people, move along now'[/COLOR]
August 12, 2011 at 3:59 pmhey Daren, welcome to the forum and this thread
your attitude sounds great and you were fortunate to have had immediate care, those doctors should be commended for not having head in arse like so many do…..I think you are nuts to go back so soon, but I don’t know you or your case, good for you for keeping up the fight though
hang tough all and do what you can to amuse yourselves while healing……keep the positive stories coming:D
August 12, 2011 at 3:54 pm5000 mcg as the label recommends
August 9, 2011 at 2:27 pmmyelin grows at the rate of 1mm per day or so the experts say. long-term disability is more common with patients who are older. 70% are supposed to emerge undamaged, recovery from 6 months to 3 years…the ONLY answer to helping fatigue is exercise, according to the experts
I dunno how to accelerate this process. samE will supposedly increase the rate of growth but it aint cheap
sorry Hedley, all I have is cold comfort….
August 7, 2011 at 1:07 am[QUOTE=Chrissy]NGG – I’m hearing a Collective Soul sort of tune??!?![/QUOTE]
hey Chrissy baby, I do like them, but I’m gonna go a little more thrashy here, like the Stooges or MotorheadAugust 6, 2011 at 8:09 am[QUOTE=alk630]Yes, would appreciate the link please Northern Guitar Guy.
More specifically, if someone has presented with classic early symptoms of GBS and been initially misdiagnosed after seeking help from the medical profession, only for symptoms to get worse over a period of days/weeks and then after diagnosis being successfully treated with IvIg. Would there be a case that had you received early treatment, then the severity may have been limited and you would still have a job, house, less pain and paralysis, etc…[/QUOTE]
I’m curious too, as far as I’m concerned, they f***ed up in a big way and I’M still paying for it…..
[url]http://www.gbs-cidp.org/forums/showthread.php?t=6829[/url]August 5, 2011 at 8:15 pm[QUOTE=alk630]I’m really interested to hear if anyone has been successful in bringing about a successful case for misdiagnosis or malpractise concerning GBS?[/QUOTE]
I can point you to my story if i can find the link. I didn’t consider suing because up here in Canada I would just have been looking for a settlement from an already taxed system. However, I would argue that telling a patient they ‘likely’ have GBS and to go home and come back if it gets worse is ignorant.August 5, 2011 at 7:09 pm[quote=GH-CIDP]NGG, I’m sorry you had a bad experience with a doctor, but I don’t know why you think it has something to do with me. I wouldn’t recommend anyone stay with a doctor in whom they lack confidence. Find one you like better.
As for whether I read your post or not, I tend not to read the posts of angry persons, and when I do read an angry post, I generally ignore it. Anger is not conducive to healing, as I’ve said before.[/quote] you don’t get many choices after waiting 9 hrs in emerg, you get what you get at that point and the clock is ticking….while your nerves are being destroyed by the hour….What do you suggest I should have done at that point? supposedly, according to the docs you have faith in, I should have been mainlining IVIG ASAP, however I got ‘quacks’ as you like to call them
August 5, 2011 at 5:26 pmbeach and gh, you obviously didn’t read my post where I mention being sent home from emerg [U]with[/U] a GBS diagnoses. my father came up with more info on his i-phone than the doctor could offer. when I was admitted, the attending doctor was incredulous at this. he said that should have never happen. I could add more about the horror show that was my care after that. Many others here report they had similar poor care. as well, my doctors have been little good othet than having the authority to sign forms…..my therapy team know FAR more about repairing and promoting the healing of damaged nerves
please do not sound like ****** by saying we are somehow deluded
I could give a s*** about my shoddy care however, I agree it isn’t going to do much to be p***ed off. however, is the next patient going to go through the same bs? is someone else going to be left to further go down because of incompetence?
and no docs dont get kickbacks for prescriptions, but the ones defending the drug company research certainly do
August 4, 2011 at 1:35 pm[QUOTE=D.U.]We have members on our forum who got GBS after severe food poisoning.
So here’s a question: how many people in Canada got GBS from severe food poisoning from the Maple Leaf foods tainted meat disaster? Where are the stats on that? There were deaths and severe illness affecting the neurological system. (GBS?)[/QUOTE]
Hey DU, I hope you are well. The outbreak caused lysteria but there was no reported outbreak of GBS to my knowledge and I’m a news hound. Shouldn’t eat that stuff anyway it’s all arseholes and ears, I can’t call it ‘meat’August 3, 2011 at 6:04 pm[QUOTE=GH-CIDP]The association of GBS with GI infections, and with [i]Campylobacter jejuni[/i] in particular, is not new. It is mentioned by Parry and Steinberg.[/QUOTE]
yeah, yeah, I read the same bookAugust 3, 2011 at 2:30 pmHi Kyle
Welcome to the site. I never went down as hard but still have leg pain. Stretching and massage helped me a lot. But I get a lot of tightness and cramping in my feet. I can walk however though my legs give out now and then. My probs with walking are more linked to equilibrium and balance.
Given your list of meds, congratulations on still being able to spell, good luck finding answers, please post anything you find
Cheers:)
August 3, 2011 at 1:20 pmI am disturbed by the lack of response in the media to this story, surely this isn’t ‘normal’ or whatever that means with this damn disease. Has the debt-ceiling issue got people transfixed? If it’s a bacterial infection that’s causing it, then surely this needs to be resolved before another ‘outbreak’……here I am suggesting that I know a damn thing or anybody else for that matter, we’ve all read the same repeated assumptions and conclusions made by the medical community
it remains a syndrome
August 3, 2011 at 12:10 pm[QUOTE=WV-Lindsay]I was diagnosed with GBS 3 weeks ago today. I feel very fortunate because it was diagnosed just 2 days after waking up with pins and needles in my feet. Spent a week in ICU/hospital getting ivig treatment for 5 days. Unfortunately on day 5 my face paralysis began to set in. I did get to go home and have been attempting to recover at home since then. I just recently decided to reach out to others online who understand what I am going through. I have always been a very positive person which has drawn me to this forum. I am thankful that everyday I am gaining more movement in my face. I am grateful for my new temperpedic pillow that cost me an arm and a leg but is actually comfortable for “most” of the night:) I am thankful that I have been able to be at home the past couple of weeks to see my beautiful, darling 15 month old daughter grow up even if I can’t hold her (although she just learned how to blow me kisses and it melts my heart!) I am so thankful to have an appetite and a wonderful hubby who loves to cook. I am thankful to have found you, whoever you are that is reading this to share this with. I had never even heard of GBS a month ago and now my life will never be the same because of it. I think about the things I used to take for granted and it is almost comical. I found out yesterday that I am probably going to be admitted to inpatient rehab but I have decided that if that is what I need, I am ready to go even knowing how hard it will be to be away from my baby but I am a fighter and I will beat this.[/QUOTE]
You just melted my heart….welcome! I wish you well and hope for your continued recovery. So glad you found our positive thread, glad to be sharing with you here, we can b**** about things on so many of the other ones;)Keep us posted on how you are doing and in touch if you need to vent but stay tough. If you haven’t met someone who has made a fine recovery let me assure that I have met folks who assure me they are fine. That could be you, just may take a while. Stay hopeful and cheers to your husband for being a good man.
