Hi I recently been told I've got ataxia type unknown. Yeah I'm struggling to get head round it. I've got shakes confusion cant string sentence together 247 but trying to explain it to dad just now i got the severe muscle twitching eyes won't focus racing thoughts panic attack paranoia..
Help please
Now I get you me to I don't have a clue what type I have ether I am up the creak I am waiting MRI and an apt with imperial college (They specialise in what I have )It's my GP and physio that have told me..Best not research or read to many horror story's .I ether crying about what's next or getting bloody cross my vision when I first got out of ICU I couldn't see a thing.Its ok now my face is like weird it's like all thin but it's my mouth it's gone from being normal to looking like I had a bloody stroke on both sides??They said I was dribbling all over the shop so at least I am not doing that.Just wait stay in touch you can phone me my number is 01227 730969
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Oh thank you ever so much. Your the first person ive spoken too who makes sense. I felt very lonely and isolated till I spoke to you.xx
By the way look up MABX4 ??Dont understand it ??Where the heck do you get the cells from??
What on earth you doing awake at 3.30??
What's this maxb4 about? I Google it and got nothing make sense.
It's my every night life..This is much better than it was but my R.E.M. Sleep is mega bad...It's about new treatment stem cell..Another lady told me about it??I don't quite understand who on earth you get the stem cells from especially as At mentions umbilical cords (I not going down that route,my pelvis is smashed in 4 bits !!I never liked that route anyway but this defo rules it out!!!🙈😬It's probably mega expensive anyway(It's in USA?)And with Trump
In power I am not going near the place no matter how desperate...
Knowing me I got it in the wrong order?Just google stem cell?For Ataxia?
My son who is 18...was diagnosed last year and the first 6 months we're hell.. No advice no help.. The Internet does hold horror stories but also lots of advice and help.. He is still unsure about which one he has atm as the genetic results haven't come back yet.. What country are you from.. We are in England and Ataxia UK are Amazing..xxxx
Hi. Nice to meet you.
I live in Southampton Hampshire in UK. Where you live??
Lymington!!!! Not far away.. Nice to meet you too 
Ahh I know luckington. I'd call it quaint little town. Do they still hold market on the road with steepish hill??
Yes Lymington has an awesome market right up the Highstreet... When my son is with us we tend to stay at the top end, as you say, the hill is rather steepish and him being a big lad, hard to push him up the hill!
Hi im not being nosy and tell me to eff off if required. But you said he big lad and push up hill..does he not have electric wheelchair or mobility scooter??? If you'd rather not comment on here ill give you my contact details.x
We just have a red cross manual wheelchair atm. Electric one on order probably in a couple of years! No mobility scooter at present either.
Ok... once again tell me to ## off. But dont DWP help towards motorised assistance? If not on benefits there are grants available.. I'm awaiting grant go ahead for stairlift and fitting of wet room.
Mine to so I wait and see just been to GP got swollen nerves in my neck?So against my wishes co codicil.I get bizarre dreams that are not scary but wake me up?Thinking I've become an aunt??When no phone call and I am answering the blooming phone!!That was two days ago then woken up with a spasm in my neck!!And last night I thought I got a text at 3.40 am with a picture I was flipping freezing So fell over getting a jumper my phone was still on charge??I more worried about my brain than my body (I get me words I'm a middle my meds in a muddle.I just hoping it's not going to get worse my brain or my body but mostly my brain!!Its like the lights are on then there's a power cut!!Or it's completely beyond me(and it's the simple stuff...Which is very annoying.
The last message was to you!!
@ Hidden. Just reaching out to you. I notice your phone no. Just letting you know there is an Ataxia support group in Deal, held 1st Saturday of each mth. We are 7 members who regularly meet from Deal, Margate, Whitstable, Sandwich, Folkestone and Hythe way. Also on FB "South East Kent Ataxia Support Group" 🙂
Hi thanks for trying to reach out to @hidden
I have to say I'm concerned. I've tried calling her mobile-no reply,tried texting- no reply. I'm reluctant to call her landline as she lives with her elderly parents and her 8 year old son..
Any advice?
Hi, if you've had no response from Hidden maybe Ataxia UK could help! Let them know your concerns.
Hi D1DG3. Just got your message. Spooky as I decided to ring her landline.i spoke to her mum and basically she is ok.
Pleased you've heard from Hidden and ok.
JR2009- have you tried going gluten free?
Hi JR Sent you my email as requested. x
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