Glad I finally joined you all! My road here sounds as familiar as a lot of you:
diagnosed in 2007, 7months of avonex.
undiagnosed in 2008, stopped avonex. Re diagnosed idiopathic polyneuropathy.
Last five years: gone from probably not ms, back to possible ms, added Progressive to the pn. My pcp says on the verge of "coming down with ms" (like it's the type of thing one comes down with).
He, as does my Chiro, thinks it's both. OH,YEAH!! Both cns and pns at the same time! I'm inclined to agree.....
So, in 5 years, there's been 3 neuros, 5 mri's, 2 lp's,
3 emg's, pints of blood work for all the usual suspects, and then some. The answer is always the same: TAKE 2 GABAPENTIN, AND COME BACK IN 6 MONTHS.
Along the way, been taking:
Aspirin/tylenol/ibuprofen cocktail
Baclofen
assorted supplements: Ca+, Mg+, B12, acidophilus, multi vitamin/minerals.
Metamucil to counteract the Ca+ and Baclofen
A happy little mix, until my cocktail gave me an ulcer, dropping my hem. down to the low 8's. That's in just the last couple of months. Pretty much decided none of the other pain killing options are viable. or warranted. Quality of life in the toilet....
I've given up on searching for a diagnosis any longer. Not going to go back in 6 months. "Been there, done that" as Gomer likes to say. I gave it 5 years of my life, with untold stress and expense, and really have nothing to show for it in the way of treatment. It's truly come to the point that: If I knew then, what I know now, I never would have bothered to complain in the first place!
Pretty much leaves it up to me, which as it turns out, is the way it's been for the last 5 years all along. So I'm doing all that I can do on my own:
1) Maintaining an objective mental status of where I'm at, as much as I can, at any given time. This is such a backwards looking disease, don't you think? Relapse, remission, yo-yoing aimlessly between the two...
2) Diet and exercise. In my former life, I was a half-marathoner. Currently, I'm booking a blistering 41 minute/mile 10K pace....do I here 50? Use to be 9....
3) Journaling.
4) Support groups, both here, and an ms yoga class I just joined. It's a lot like here: some MS-ers, some MG-ers, one limbo-lifer, and this week, some Parkinson-ers.
Any-who, hope to see you all around the board. I'm so new to this whole online stuff, so expect many mistakes.
me
diagnosed in 2007, 7months of avonex.
undiagnosed in 2008, stopped avonex. Re diagnosed idiopathic polyneuropathy.
Last five years: gone from probably not ms, back to possible ms, added Progressive to the pn. My pcp says on the verge of "coming down with ms" (like it's the type of thing one comes down with).
He, as does my Chiro, thinks it's both. OH,YEAH!! Both cns and pns at the same time! I'm inclined to agree.....
So, in 5 years, there's been 3 neuros, 5 mri's, 2 lp's,
3 emg's, pints of blood work for all the usual suspects, and then some. The answer is always the same: TAKE 2 GABAPENTIN, AND COME BACK IN 6 MONTHS.
Along the way, been taking:
Aspirin/tylenol/ibuprofen cocktail
Baclofen
assorted supplements: Ca+, Mg+, B12, acidophilus, multi vitamin/minerals.
Metamucil to counteract the Ca+ and Baclofen
A happy little mix, until my cocktail gave me an ulcer, dropping my hem. down to the low 8's. That's in just the last couple of months. Pretty much decided none of the other pain killing options are viable. or warranted. Quality of life in the toilet....
I've given up on searching for a diagnosis any longer. Not going to go back in 6 months. "Been there, done that" as Gomer likes to say. I gave it 5 years of my life, with untold stress and expense, and really have nothing to show for it in the way of treatment. It's truly come to the point that: If I knew then, what I know now, I never would have bothered to complain in the first place!
Pretty much leaves it up to me, which as it turns out, is the way it's been for the last 5 years all along. So I'm doing all that I can do on my own:
1) Maintaining an objective mental status of where I'm at, as much as I can, at any given time. This is such a backwards looking disease, don't you think? Relapse, remission, yo-yoing aimlessly between the two...
2) Diet and exercise. In my former life, I was a half-marathoner. Currently, I'm booking a blistering 41 minute/mile 10K pace....do I here 50? Use to be 9....
3) Journaling.
4) Support groups, both here, and an ms yoga class I just joined. It's a lot like here: some MS-ers, some MG-ers, one limbo-lifer, and this week, some Parkinson-ers.
Any-who, hope to see you all around the board. I'm so new to this whole online stuff, so expect many mistakes.
me
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