Thanks for the support

March 28, 2008 at 12:29 pm

I feel like such a wus when I read what some of you went/go through. Things are just tough here at work and home, while I seem find on outward appearances, mentally and physically I’m not. Still can’t believe that before I got GBS I never heard of it. I just want my old self back, be able to walk long distances, do stairs without holding on for dear life. Wondering too if I should continue with the IVIG. It helped early on but the last few treatments didn’t seem to do much. I hear pros and cons about Canada/US systems, so far I’m covered here as long as I’m employed.

Suzanne, the info on POTS is great? I’m experiencing all of them. Printed it out and will present it to my doc next week.

Thanks for all the support and advice. It’s a weekend so its rest time.

Thanks for the support

December 7, 2007 at 8:16 am

Hey All,
Well, the headaches have been worse ever since I got rid of the massive headache after my spinal tap. The migraines that I get are from light and things. My old max was 125 and I would still get headaches. Every time that I receive a treatment or anything I have a headache> Its becomming a daily thing. Anyways, 125 was my max and since I got the 200 I feel ok. I was just wondering if anyone got IVIG faster then 200. Too me 588 was INSANE and I dont know how anyone could receive it that fast. When my nurse brought it up gradually to 200, she monitered me very closely and im always monitored at home that night. I took it easy. No moving…lol. Anyways, Im not sure what speed I will ask for in 2 weeks. But until then…thanks for the replies and comments. They help a lot making me change my decision for a lot of things.
Take Care everyone,

thanks for the support

April 28, 2007 at 2:29 pm

Mary V, thanks for your reply. Things are looking up a little. I am seeing some small improvements and am hoping she’s on the path to walking soon.
Again, I appreciate everyone’s support!

thanks for the support…

March 15, 2007 at 6:29 pm

The initial diagnosis from the first neuro she saw was “a mild form of GBS” as she had a viral illness with high temps and joint pain two weeks before all this started.

It was only after she had a return of more severe symptoms (arm, face, acute pain when feeling returned etc) and we sought help at the hospital (as told to) that the different diagnoses started. The first ER doctor told us that it couldn’t possibly be GBS as only her sensory nerves were effected :confused: She was tired from having the flu and just needed rest. The second one said that he has tricked her into telling the truth when touching her foot/leg with (blunt) scissor points.1 point -2 points. This is despite the fact that she was incorrect over half the time even where she could feel it and I could see her leg bouncing around from the force. 😡 Of course she knew when he was touching her when she could feel her knee moving! The third said it was definitely physiological due to the pattern of numbness in her face and admitted her for the night. Her boss (the original neuro) had decided to listen to the second ER doctor plus her atypical symptoms and over-ruled her. 😮 He did not even come in to see M. despite her total loss of sensation from shoulder to finger tip and the right side of her face.

He later told us in his office when we disputed his assertion that it was all psychological that there was a ‘definitive test’ (something about sending a magnetic stream down the nerve path?) that could be done. When we asked why this hadn’t already been done he responded that she had to be symptomatic at the time. She had been numb for 5 days, he didn’t come to the hospital AND this was the first time in over two months, and several episodes, that this had been mentioned. After I asked him why we had never been told of this before he stood up, opened the door and ushered us out! $110 thank you very much! We now have a new neuro.

I often wonder if she would be getting the same treatment from the doctors if she was a 45 year old man. What do others think?