ITS NOT DEVICS WHAT A SURPRISE = NOT

[MrsAristotle]

Well the blood tests came back negative for Devics which I am not surprised at all, as I felt it was clutching at straws as my research shows you get more problems with your eyes then I have but still at least its another elimination and my problems started 10 years ago and has gotten worse slowly over time.

My neurologist hasnt dismissed me though he wants to see me to discuss the way forward.......so thats something.

Any ideas guys what i need to say to him i dont want to waste a minute.

The only reason i will see him is the pain. It has changed and has got worse. The pain in my left thigh is horrible. It feels like the nerves in my leg are fully exposed it makes me feel sick, and the burning and fizzing and prickling has got worse whether I sit, stand or lay down there is no relief only sleep.

Thanks for all your support guys. xxx

[Mike_Shuswap]

Hi Maria, ditto what everyone else said.

I'm so pleased to see you're fighting the good fight again! Keep the momentum going, it sounds like your neuro is interested in helping you, and that's wonderful!

As far as treating the pain, I've just been prescribe Gabapentin for neurological pain, although I haven't tried it yet, so I'm not sure how effective it is. (sounds like analabscess might have 1st hand knowledge on this)

Anyway, keep a stiff upper lip (whatever that means)

I really wish you good luck!

Mike

[MrsAristotle]

HA ha ha sam you are a riot that end of your post cheered me up know end lol. xxx  big hugs.x

[jibjen]

your funny (The last part)

Jibs

[silkcut]

Hi Maria

Well, that's a relief - phew!

But means that the hunt is still on. And the neuro is still up for it, so that's good.

The thigh pain must be so exhausting and beyond frustrating. Poor you... I know nothing about gabapentin, but could it be worth a shot?

I'm not sure I can add anything to what you need to be asking now, but I am very impressed by Mike Shuswap's summation of his disease history. All on one page. Neat.

I'd be inclined to get a big blank sheet of paper and post-its...write every single sx you've ever had on a separate post-it and move them all around to make recognisable groupings...it may be that they suggest a disease pattern that no one's come up with before. And could it help you focus on the most troubling/most important/least worrisome/most curious/most often experienced/most painful etc etc.

Sometimes we forget crucial signs and sx - and the doctors don't ask usually.

Just a thought! If that doesn't work you could just do a pagan ritual with them - burn each post-it ceremoniously (don't forget the incense, salt, black cats, black puddings and elder bushes!) at the next full moon!

hugs
sammxxx

[jibjen]

Hi Maria,

Isn't funny when you just know about something..I am glad too your neuro is not dismissing you or giving up....

I wrote things out for me to ask last appt. but kept it simple so he would get overwhelmed and mad. It helped. I tried to ask open ended questions that he would have to explain instead of yes or no....

I am happy he/she  is sticking with you...and vise versa...  

Jibby

[analabscess]

I'm pleased your neuro continuing to see you. Have you tried gabapentin, that is really good for neuropathic pain.
xxx