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Spinal Cord Disorders Message Board


Spinal Cord Disorders Board Index


Feelbad and Kirafaye, thanks for responding. I had a very, very rough day and evening yesterday....Neuropathy and Paraesthesia SO bad and something very central making me feel so weak, so "nothing." I am wondering if the Neurontin is causing some of this. Which is what I'm taking it for (900 mg)....but my doc. said it can cause drowsiness and foggy thinking (oh great!) and that was why he didn't want me on it, but the neuro put me on it.

Feelbad, I am like you, I have gotten all the past history and reports. I keep them in large binders, and I have two full so far. Some folks might think I'm obsessive. But I can't imagine how I'd feel at this point if I didn't know I had all the info right ready to hand. I have hospital reports, doctor reports, all the appts I've seen, etc. I've been thru so many tests. No, I do not have a dx of syr. I haven't even mentioned that to my neuro yet, I'll see him (and later same day, my PTP--did I mention this is all work comp--I "was" a horse trainer) on Dec. 6 and plan to first tell him about syr. and also be very proactive and push for more testing. My PTP said he wants to send me to Irvine, CA to have a PETscan and I'm ready to go. I simply have to find out what is wrong, I'm in such swift decline, and my world is beginning to shrink to just my house...I only have an hour a day of any type of energy, and just a year and a half ago, I was actively training and caring for jumping horses! (I had an accident much like Christopher Reeves and I am very blessed to be walking and talking at all).

I like your advice and I hope others read it. I do the same, every two months, I ask for copies of reports to update everything.

Also, about my neck and spinal cord...when I was in the hospital, an aide, in the middle of the night, picked me up, one arm under my neck and one under my knees, to move me!!! I screamed and in the middle of that, my reflexes snapped out and hit him in the stomach. There is more, but suffice it to say, that event might have really damaged my spinal cord, but I didn't know it then. I don't know ANYTHING about my injury and everything I'm going thru because of it, unless I research it and find it out. I landed on my head (yes, I had a helmet on) hard enough to break my neck in 4 places, YET no one in the hospital mentioned brain damage to me, and I was sent home in 4 days to stay there for one month, do not drive or go anywhere, and no visiting nurse or whatever to come see me and how I was doing...No instructions to my husband as to my care....no phone calls to even check up on me!

AND I got an atty that is highly respected but I can't seem to get a face to face mtg with him. I called a week ago and when I called again the gal said she hadn't "asked him yet." gggrrr.

Well, thanks for your responses. I feel pretty alone right now and have to be my own advocate, no one in my family is doing it for me...it's all my own fight and struggle and that's okay....keeps my brain going. Fighting for your health, for your survival, who thought we'd ever have to do this?

thanks you guys, it touches me deeply, your replies!

Shad





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