Hi Frogga,

Please tell me to sod off if I am asking the wrong questions and if you think I should just mind my own business but I was wondering what your neurologist attributes your quadraplegia to?
There seems to be so much that you are enduring that is just not acceptable by any standards.
I feel so sorry for you that it seems that your medical team seem to allow you to have all these shocking problems without there seeming to be any interventional medical management. It seems very much like they have wiped their hands of you and you just have to deal with it . This goes against every single grain of the nurse in me.
At your age you deserve better and I am very sad for you. I have awful dystonia of my legs and spasmodicaly my arms but can't figure the pathology of RSD that could render you totally unable to move, which is why I so wish that your doctors would take you under their wings and find the reason.
Sorry if I am seemingly emotional about this but I have children your age and I can't even imagine the hardship for you and your family. I would so rather it be me who suffers than my children.
Please take care and as I said, I apologise for all my questions.
Tayla xo

Hi. I think GnP had it right when she posted this a little while ago in her ketamine thread:

If only we could all move to Australia and get medical access to the wide awake coma treatments through the health system - we would all be feeling so much better-what a nice dream that would be.

Odd that the Australian analog to the NHS delivers significantly better services than in the UK: let alone the FDA regulated private practice of medicine US in the case of ketamine treatment. Presumably, Australia is wealthier on a per capita basis, but still it ain't right.

Mike

Hey Mollsy are you ok...

Thanks

Love ya ... xxxxxxxxx

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

Hi Mike. It's not right and it's never going to be right for only people who are wealthy to have access to doctors. But yet, if you provide free treatment for everyone it is very hard to provide quality treatment. Add in some stupid disease with no research and you are screwed when it comes to treatment.

Let's all pack up and move in with Tayla. It's so odd she has access to things we can only dream of.

Love ya

Froggsy xxxx