[Raglet]

B~U~G~G~E~R !

I have lost MORE nerve function in my foot, which is really annoying. I have progressed from a partial foot drop in my left foot to a near full foot drop, so I am tripping over my foot even more as I walk. I have splints that I wear for this, but during the summer I do like to be able to wear sandals and bare legs (the splints go up to my knees so that's NOT bare legs) so I am feeling very grumpy about this. I also have a partial foot drop in my right foot, but my left side always progresses first, then the right side follows along at a later date.

There really isn't anything that can be done, I will tell my neuro at my next appointment but all available treatments have been tried over many many years, and they just don't do anything for me so there is no point doing anything more at this stage. I will have some more rituxan at some stage, but beyond that nothing much can be done.

oh well, just having a bit of a moan here, hope you are all having a good day

raglet

 

[lazylegs]

Hi Raglet,

I know how disappointed you must be to constantly see things progressing. You just get used to one thing and here comes another. Maybe this latest development will speed up your next Rituxan treatment.

You should just start a new trend with your splints. Paint some design on them and declare they are the latest in fashion. Otherwise a long dress that is very wide at the bottom might keep you cool enough. That is what I do to hide these bulging veins of mine.

Take care,
Lazylegs

 

[Raglet]

I really have thought about painting my splints - I wish they came in nice colours, white plastic is just SSSOOO boring.

The main thing I hate about the splints in summer is that they don't breathe, so they are very hot and sweaty and slimey. Ick. It's summer down under, which is what is making this more of an issue as I have to wear runners with my splints, not sandals. But still, at least it means that I can walk my dogs so that is really important. Yesterday out at the dog park the dogs kept looking at me as if to say 'come on mum, what's the deal ?'

I am sure if they put some thought into it they could come up with a better design, but I guess there is just not a big enough market out there.


mumble @#$#@$#

raglet

 

[sam101360]

Raglet:


((((HUGS)))), I am so sorry that you still have continuing degression, I wish they could stop or at least slow this down to a crawl, not you, the disease!

They sell this soft absorbant socklike material at the surgical supply store, it is used to line casts and absorb sweat, maybe something like that might help with the sweat in the sumer heat...maybe they come in colors? Then you could change out? Probably not...they might run...

Nike just came out with a running sandal....all velcro instead of laces...would something like that be a possible compromise?

Oh well...I now have smoke coming from my ears for all the anger and thinking...stay well, love you - Stephanie

 

[Raglet]

that surgical liner sounds really interesting - if I could get some of that to go under the upper part of my splint that would really help. Squelching along in a plastic splint really is unattractive !

I have on pair of sandals that will hold my splints, which is good, but coz the splints are on they don't feel very 'sandal-ish' if you know what I mean.

I am just really moaning here, it is good that i can at least wear one pair of sandals, just feeling a tad sorry for myself and having a good wallow !

I will definitely check out that lining stuff though, that sounds really good

cheers

raglet

 

[confused1]

((((( Karen ))))

I wish the word "progressive" would disappear. Sending good thoughts and wishes your way. Surely, if they can grow a new frog heart from a baby frog's cells, then a cure for some of this nasty stuff will happen in our lifetimes. I want very much to believe that.

Wishing you well,
Sunny

 

[Raglet]

I wish the word "progressive" would disappear.

Amen to that !!!!!!!!!

 

[julsie]

I hope they give you chance to try the IVIG,for some people it's the only thing that keeps the neuropathy under control.It's not right at all that some people miss out because of cost
Julsie

 

[lin]

(((((((((((Raglet))))))))))))))) im sorry, things are not going to well for you, I can understand you not wanting to wear the splints in the summer months, this is a big blow for you,i can imagine,
And why shouldnt you sound off, its one things after another, if you cant sound off here where can you

sending you big hugs Lin xxx