Urgent advice req: Hi I recently been told I've... - Ataxia UK

Ataxia UK

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Urgent advice req

25 Replies

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

25 Replies

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

I

in reply to

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??

in reply to

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?

JPsMum profile image
JPsMum

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

in reply to JPsMum

Hi. Nice to meet you.

I live in Southampton Hampshire in UK. Where you live??

JPsMum profile image
JPsMum in reply to

Lymington!!!! Not far away.. Nice to meet you too :)

in reply to JPsMum

Ahh I know luckington. I'd call it quaint little town. Do they still hold market on the road with steepish hill??

JPsMum profile image
JPsMum in reply to

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! :)

in reply to JPsMum

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

JPsMum profile image
JPsMum in reply to

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.

in reply to JPsMum

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.

JPsMum profile image
JPsMum in reply to

Haven't the foggiest... We are waiting for his PIP mandatory reconstruction, as he only got the lowest mobility element... Not daily living. We are new to all of this stuff.

in reply to JPsMum

Oh boy... you seriously need help!!! Are you on Facebook??

in reply to JPsMum

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.

in reply to JPsMum

The last message was to you!!

D1DG3 profile image
D1DG3

@ 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" 🙂

in reply to D1DG3

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?

D1DG3 profile image
D1DG3 in reply to

Hi, if you've had no response from Hidden maybe Ataxia UK could help! Let them know your concerns.

in reply to

Hi D1DG3. Just got your message. Spooky as I decided to ring her landline.i spoke to her mum and basically she is ok.

D1DG3 profile image
D1DG3 in reply to

Pleased you've heard from Hidden and ok.

naturegirl276 profile image
naturegirl276

JR2009- have you tried going gluten free?

Veteran250 profile image
Veteran250

Hi JR Sent you my email as requested. x

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