Hey Tayla

Basically I have full body RSD and then developed generalised dystonia. The dystonia in my legs has twisted my toes, feet, ankles, knees and hips out of line and they are utterly rigid. Very little apart from a sledge hammer or my mother can move them. They are locked around each other and cannot be moved unless the spasticity is trying to kick them against the rigidity.

With my arms - the RSD clawed my hands up first and the the muscles in my thumbs dislocated them and they twisted over the hands. The clawed fingers then started to try and twist upwards over my knuckles, so they hover between twisted over my knucles or tight fists depending what they are up to. My wrists are pulled inwards (worse on left) and at times my wrists have bent so my fingers are laying on the inside of my arms. My elbows used to hyper extend backwards, I have big stupid splints that have helped reduce that, but now they are ruined, ripped to pieces by stupid splints that were tightened too far too fast so I can't extend or flex them. My left shoulder has been weaker since I had a fall a couple of years into RSD and dislocated it very badly and dislocates easily now, so bizzarely it is only held in place by spasm. But I have almost no active movement in that one. My right shoulder is also held tight to me by the spasticity. I can slightly shrug it and usually rely on that for using my wheelchair. But it has come out in sympathy with the rest of my body and won't do that at the moment. My head is twisted by the dystonia over onto my right side. Before botox and all the other meds it was twisted right round and up. At times I have also had jaw lock for months at a time, my tongue twisting round me, uncontrollable blinking, my head being thrown back and severe full body spasms (very similar to fits). I jerk and shake. The meds that I have to take to reduce the tone in my body means that the small muscles, like in my neck, have gone semi floppy, so I can't hold my head up anymore as it was untreated and thus the other muscles gave up. Oh, and my spine, whilst it twists and has given me a double scoliosis and the beginnings of a kurtosis (? spelling) has become rigid. This all happened after my foot started twisting 8 months in to RSD though looking back one wonders whether it would have happened anyway. Yeh, so basically I can't grip anything, bring my arms up, hold things etc. when my shoulders are functioning better I can drive my wheelchair and I can drive an adapted car which is designed for C3/ C4 quads (is that the right name for it?).


I really don't mind questions Tayla, it really doesn't bother me.

I suppose the problem is that in order for me to be under the "best" (HAHA) doctors I have my RSD doctor in Bath, my dystonia doctor in London and my pain specialist in Colchester. They all disagree with everything the other ones say and all tell me to go for one thing or the other. Take the DBS - I wanted it, the neuro wanted it, RSD said no, pain said no. We are looking at a pain pump, pain said ok, RSD said ermm better than DBS, neuros aren't keen.
Now turns out I can't have the DBS but still... grrrr. I am doing better than far more people though, I really am. One has dystonia and it holds her out flat, geez at least I can sit! LOL

As you say. People have given up on me.

It is hard and it is hard on the family. I don't think it helps we all get so frustrated with this whole thing as we want it to be different! and it's not... grrr. But I suppose that is life, really.

However, I think I may have just found the answer to several prayers. It's not a cure. But it's an electric wheelchair that I can use with say sip and puff controls or perhaps mini sensitives or something and that will stand/ tilt me to help with pressure (I get pressure sores just by looking at my wheelchair) and that is electronic tilt/ recline/ elevating leg rests/ elevating seat/ standing. Although my wheelchair is good (electric tilt/ leg rests) this one will give me a far higher ability to use it when I am like this. I may even have found someone willing to pay the $30,000 price tag! LOL

Love ya and feel free to ask anything

Frogga xxxxxxxx