[Raglet]

I had a great neuro visit the other day. She confirmed PN damage to my hip, which is preventing me from lifting that leg off the floor - I drag it quite a lot. This is pretty much what I thought it was. She did however say that it may get better so I am hopeful that it will, although none of the rest of my motor loss has ever got better but I am choosing to be optimistic here.

The damage to my arm it turns out is central not peripheral, which is what she said she thought it was prior to having nerve studies done, although the same sensori-motor damage that effects my legs is definintely on it's way in my arms, but it hasn't hit yet. But, the values in my arms (nerve conduction studies) are now only just snuck into the normal range. So, I figure if she was right about my hand/arm then she could be right about my hip. Fingers crossed.

Apart from that it is same old same old - quite a bit of nerve damage to my tongue but no atrophy which she said was good She thinks that my permantely husky voice is central (brain) rather than a problem with a nerve going to my larynx, which another doctor had suggested.

Basically I am already on all the treatment I can be on for my lupus which is behind all this stuff, so it's the same old same old on that front.

So, that was a really good visit overall

cheers

raglet

[Raglet]

anybody ? I thought it was a really good visit - I don't care if you can't personally identify with all my issues, it's just nice to get a reply.

There, I have got one, from me! That ickky old 0 will flip over to one, phew.

raglet

[dahlek]

I've been pretty much been pre-occupied with my own med issues to pay a whole lot of energy here. I am sorry I've neglected you! I'd hoped others would have responded tho... We all get very TIRED with our PN at times tho, and I guess this is one of them?

It's good to hear that some things aren't as bad as they could be? In some ways.....
That it's central enables your docs to focus more on the right areas in which to focus for treatment. Not that it makes the pain go away or the like.

I guess next? Its up to you to ask the docs HOW can I get function back? IF possible??????? Argh! It sounds soo much easier said than done tho.
Go for it good person.. Get better! Or, as best as you can given all and all.
Never give up! To give up is to surrender to a very nasty unknown. I, for one? Don't like those! 's and hope always! - j

[Raglet]

Thank you (if I could hahaha).

I know it's silly, I was just feeling a little abandoned.

I am just very happy that there is at least some chance of recovery with my latest lost. That would be new for me. I have excellent treatment (rituximab, which is $20,000.00 each time I have it) so I am very lucky.

raglet

[ras1256]

Raglet,

I didn't even see your post until today - I don't know where I was. I've been checking in several times a day the last few days .

It SO good to hear good news from someone! It sounds like your neuro has you pretty well lined out, and that is so refreshing! We'll all be keeping fingers crossed, praying, holding our breath - whatever we each do to send positive thoughts your way for continued return to functionality!

Congratulations, and whatever you're doing keep it up. You can be my beacon of hope!


Lots of high 5's!

Originally Posted by Raglet

I had a great neuro visit the other day. She confirmed PN damage to my hip, which is preventing me from lifting that leg off the floor - I drag it quite a lot. This is pretty much what I thought it was. She did however say that it may get better so I am hopeful that it will, although none of the rest of my motor loss has ever got better but I am choosing to be optimistic here.

The damage to my arm it turns out is central not peripheral, which is what she said she thought it was prior to having nerve studies done, although the same sensori-motor damage that effects my legs is definintely on it's way in my arms, but it hasn't hit yet. But, the values in my arms (nerve conduction studies) are now only just snuck into the normal range. So, I figure if she was right about my hand/arm then she could be right about my hip. Fingers crossed.

Apart from that it is same old same old - quite a bit of nerve damage to my tongue but no atrophy which she said was good She thinks that my permantely husky voice is central (brain) rather than a problem with a nerve going to my larynx, which another doctor had suggested.

Basically I am already on all the treatment I can be on for my lupus which is behind all this stuff, so it's the same old same old on that front.

So, that was a really good visit overall

cheers

raglet

[Raglet]

thanks Becky

This board has some seriously cool smilies (you can tell, it doesn't take much to amuse me) and I just gotta have a little play.



yes, I do think my neuro is pretty on to it - I just have trouble with 'disappearing referrals' so finger crossed that this latest one makes it to it's destination. I just can't face it if it gets 'lost' like the one last year that I spent literally months chasing up to make it happen.

cheers

raglet