Stormangel28
06-26-2007, 06:52 PM
I know everyone here has felt this way for different reasons, but I REALLY need to vent.
I'M FED UP!!!
The last 19 months of my life have been an every so slowly worsening of symptoms, and a variety of doctors who are all pleased to stand around and either do nothing, or do close to nothing.
The frustration and feeling of worthlessness that accompanies that is overwhelming. My current doctor (this is my 3rd, due to moving) is a "passive" doctor. I'm trying to be patient because I've only been seeing her for a month or so, but come on!!
She's done neck x-rays (clear), and blood tests for:
electrolytes
magnesium
calcium
creatine
urea
thyroid
phosphorus
All came up perfect (except for a VERY slight elevation in calcium), so what do you think she recommended??? VITAMIN and MINERAL supplements. Mega doses....Centrum Forte twice a day (because "what shows in the blood isn't indicative of what's happening in the muscles"....why bother testing it then???).
I've had my Neurontin (for electrical shock sensations body wide) upped from 300mg a day to 900mg a day, which has almost eliminated the electrical shock sensations.
What I still have however is:
"rippling" patches all over, particularly my legs
stiff left calf muscle (this is what I am supposedly taking the vitamins for)
tingling on and off in arms and legs (not pins and needles, more of a minty cool feeling)
fingers that are starting to not work properly (dropping things, repeated tries to pick small things up)
Muscle "jerks"-just little ones, usually a hand or a foot will "twitch" once, and that's it, but sometimes it's my neck, which sends my head backward
hands/arms that seem to "hesitate" before accomplishing what I want
Vertigo spells (usually last 4-5 days)
Sore neck (like I slept funny) constantly
I know that some of this stuff can take a long time to sort out, but I'm at my wits end. Particularly because my "ripplings" often make it feel like there are bugs living under my skin, it's SO disgusting.
My doctor's also scheduled me for a Nerve Conduction Test to check for carpal tunnel syndrome (because some of my electrical shock sensations happen in my ring and pinky fingers of my right hand and in both thumbs). That won't happen until the end of August though.
I have heard that it can take up to 18 months to get in to see a neurologist here (I don't know how accurate that is though), if that's the case, why not refer me now, and if we figure it out before then, I'm sure someone else will be pleased to not have to wait 18 months to get in.
My husband suggested I make an appointment for Thursday morning (she's only in Mon, Tues and Thurs, and only in the mornings), and he would find a sitter and come with me, and speak up for me (asking for a neuro consult) but frankly, I've been in to see her once a week, for one thing or another, since she became my doctor (not all nerve related). I feel like a pain in her butt, like "that patient". The one she goes "oh man, now what?" about. I'm just not up for that right now.
Maybe I'll get "lucky" and wake up blind in 1 eye, or partially paralyzed, or in excrutiating pain. Maybe in the ER I'd get a Neuro consult.
Thankfully, my breakdown today, to my husband, gave him some insight as to how I have been feeling (emotionally), and helped me feel a little better.
Ok, so I've ranted long enough.
Sorry, and thank you all for listening!
Christine
I'M FED UP!!!
The last 19 months of my life have been an every so slowly worsening of symptoms, and a variety of doctors who are all pleased to stand around and either do nothing, or do close to nothing.
The frustration and feeling of worthlessness that accompanies that is overwhelming. My current doctor (this is my 3rd, due to moving) is a "passive" doctor. I'm trying to be patient because I've only been seeing her for a month or so, but come on!!
She's done neck x-rays (clear), and blood tests for:
electrolytes
magnesium
calcium
creatine
urea
thyroid
phosphorus
All came up perfect (except for a VERY slight elevation in calcium), so what do you think she recommended??? VITAMIN and MINERAL supplements. Mega doses....Centrum Forte twice a day (because "what shows in the blood isn't indicative of what's happening in the muscles"....why bother testing it then???).
I've had my Neurontin (for electrical shock sensations body wide) upped from 300mg a day to 900mg a day, which has almost eliminated the electrical shock sensations.
What I still have however is:
"rippling" patches all over, particularly my legs
stiff left calf muscle (this is what I am supposedly taking the vitamins for)
tingling on and off in arms and legs (not pins and needles, more of a minty cool feeling)
fingers that are starting to not work properly (dropping things, repeated tries to pick small things up)
Muscle "jerks"-just little ones, usually a hand or a foot will "twitch" once, and that's it, but sometimes it's my neck, which sends my head backward
hands/arms that seem to "hesitate" before accomplishing what I want
Vertigo spells (usually last 4-5 days)
Sore neck (like I slept funny) constantly
I know that some of this stuff can take a long time to sort out, but I'm at my wits end. Particularly because my "ripplings" often make it feel like there are bugs living under my skin, it's SO disgusting.
My doctor's also scheduled me for a Nerve Conduction Test to check for carpal tunnel syndrome (because some of my electrical shock sensations happen in my ring and pinky fingers of my right hand and in both thumbs). That won't happen until the end of August though.
I have heard that it can take up to 18 months to get in to see a neurologist here (I don't know how accurate that is though), if that's the case, why not refer me now, and if we figure it out before then, I'm sure someone else will be pleased to not have to wait 18 months to get in.
My husband suggested I make an appointment for Thursday morning (she's only in Mon, Tues and Thurs, and only in the mornings), and he would find a sitter and come with me, and speak up for me (asking for a neuro consult) but frankly, I've been in to see her once a week, for one thing or another, since she became my doctor (not all nerve related). I feel like a pain in her butt, like "that patient". The one she goes "oh man, now what?" about. I'm just not up for that right now.
Maybe I'll get "lucky" and wake up blind in 1 eye, or partially paralyzed, or in excrutiating pain. Maybe in the ER I'd get a Neuro consult.
Thankfully, my breakdown today, to my husband, gave him some insight as to how I have been feeling (emotionally), and helped me feel a little better.
Ok, so I've ranted long enough.
Sorry, and thank you all for listening!
Christine