Hi all, hope everyone is well.
By the title of my discussion those of you that know me can guess that I am very, very, very p****d off and in need of a rant.
O.K. Diagnosed with SCA6 by genetic testing and all the other stuff a couple of years ago after having had symptoms for about two years previously. Seen several neurologists (waste of time), Physio' s, O.T's (which I must say have been bloody amazing as I am now having a downstairs bedroom and wet room all thanks to them) and I have been waiting for a good 6 or 7 months to go to UCLH Ataxia specialist clinic in London.
So, appointment at 13:30, transport due between 10:30 and 11:30. After several phone calls it finally arrived at 13:10, a huge ambulance just for me. Nothing simple like a car, much more cost effective, apparently he forgot me.
Anyway got to see "the specialist neurologist in Ataxia" at around 14:30. Went in did all the usual stuff, family tree. any other family members, finger pointing, walking, reflexes etc. Why? I have genetic Ataxia it's been diagnosed, again, a waste of time.
Next thing, No cure, No treatment blah blah blah. I told him about my hypnogenic jerks (like when you nod off and you feel like falling only much worse and in my case very intense and sometimes painful) however; he said they are very rare to not only have them, but to have them to the extent I described. so it looks like all the people that replied to my discussion on these jerks are marvels as it is so rare, what do I know so is Ataxia, or is it?
I also told him about the severe cramps in my legs and hands and that on 3 or 4 occasions my right foot has gone into spasm and turned inwards, very painful to the point of crying. Not with Ataxia he says..... Ataxia symptoms in SCA6 are only usually slight loss of balance and some occasional tiredness due to having to concentrate on walking.
People with Ataxia do not get any sort of Tinnitus or ringing in the ears, do not have headaches, don't usually have difficulties with fine motor skills, don't have bladder issues, or sexual dysfunction, tremors, seizures, organising and planning verbal communication, problems with hand writing, using cutlery, feeling very over sensitive to touch, very easily startled, speech slurring occasionally etc. BUT
WE DO FALL OVER. Hurray something positive.
After all of 15 minutes (although in the letter it said I would be up to an hour for my first consultation,) I was discharged and he wouldn't need to see me again however he was more than happy to talk to my 16 and 20 year old boys about being tested as it's 50/50 chance of them carrying the gene. Oh really, no s**t Sherlock.
I actually said what a waste of time and tax payers money as everything he had done had been done before so what was the point? He said that if any new treatment or studies come up they could make me aware. Surely this could have been sent via e mail, or a letter or a phone call, smoke signals instead of costing me a day off work, transport costs both to and from the hospital, building hopes up only to be told that Ataxians don't generally get any other symptoms and basically that was that but he's going to write to my G.P to try and reduce my medication (nut nut pills that I really need as now due to Ataxia I have Chronic Clinical Depression and chronic pain, oh no sorry I don't have that either according to him so yeah go ahead and reduce them) and to top it off I waited for over two hours for transport and after dropping other people off, I got in at 21:30. Lovely. So what do I think of neurologists? I can't say otherwise John Colyer or Ben Mendoza would have me banned for blasphemy and probably given 20 lashes. Thanks, I feel a bit better now, must be my meds kicking in. Actually the neurologist blamed all symptoms on medication. Hey ho thanks for listening.
Anyone know how Beryl is I haven't spoken to her in a while. Have a good day fellow Ataxians or nutters or whatever people think of us including BLOODY NEUROLOGISTS. I think I'm O.K. to say that John xx