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Hello there!
Im sorry I havent been here in a while. Bit of an update, the Baclofen didnt work - broke out in an allergic rash around my neck and had a job to stay awake, have to wait till December now before I can see the neuro again. How is everyone coping with the whole lockdown 2 thing looming? I hope everyone is doing ok and I will try to be around more than I have.
Hang in there, guys.
T
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Sorry it didn't work for you love. Ay idea what the neuro will suggest next?
Lockdown 2? I think it's coming for us here so we will just have to do what is decreed and make do....... You?
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I’m so sorry that didn’t work out :(
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Hey there, thankyou for your kind words.
As for what the neuro is going to try next? Anyone's guess really, though I would imagine it will be botox - which Im ok with, kinda wish theyd done that in the beginning in some ways, lol. Hard to stay positive right now - the weather, the lockdown, my health...the depression hasnt got much of a chance. Oh well, no choice - just have to keep on keeping on!
Hope all is well, speak to you soon.
T xx
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Then come and talk to us some more ;)
Lockdown sucks, sh)t physical health sucks, not knowing what's happening or what they are doing next sucks too.... (panda)
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When do you next see Neuro?
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Hey, guys. :)
Well, I heard from the neuro today - the test came back negative for HSP, which is good. Still waiting for the dystonia panel though, so I'll let you know what the results are when I get them. I see the neuro again in December, so its not too long a wait now.
Hope everyone is doing well - speak to you soon. T x
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Hey hunni, welcome home ;) I've missed you! :) Glad the HSP was negative. How are you doing in yourself love?
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Thankyou all. :)
I am pleased that it didnt turn out to be HSP - who wants a rare disease after all? However, if the dystonia panel comes back negative as well, I may be back to square one, virtually. Good to eliminate things, but until I know what it is I can't get help really, which is frustrating. I hope everyone here is doing well, and thanks again for your kind words. Love and light.
T x
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It is frustrating. For me if they don't know they just say "oh it's down to the fibro..." Frustrating as hell!
Are you getting out and about? Meeting up with any friends at all?
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Hey, Suzi. :)
Havent seen friends for a very long time (only really used to see them in Newport when I used to go drinking), but I talk to people by instant message all the time. As for getting about, there is another lock down here in Wales because of the sodding virus! Even if things werent locked down though Im broke so theres nowhere to go really. Go for drives occasionally, but thats about it for now.
Im sorry to hear that they tend to be dismissive with your condition. I know a few people with fibro and it sounds pretty rough - I understand that there is something known as fibro fog which must be very difficult, particularly along with the depression. I hope today is a good one, hon. Speak soon, and thank you. :) T x
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Ahh yes, my son is at uni in Wales so struggling with it too... Fibro fog is frustrating as hell!
As for being broke - are you claiming all you can? Have you spoken to someone from welfare rights or the CAB?
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Do you know when you’ll get the dystonia results?
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Hey. Whats your son studying and where, Suzi? I did both of my degrees at the university of Wales Newport, as it was then - its the University of South Wales now, mainly based in Pontypridd, I think. As for claiming all I can, I'm on UC but was turned down for PIP earlier this year (I had 8 points and you need 10 or 12 I think). Had some expense here at the end of the summer so just have to wait for the coffers to refill as it were. ;)
As for the dystonia results Paula, I have no idea. Im hoping its before my appointment in December, but I don't know. HSP is a big, complicated panel in comparison to dystonia, so maybe it won't take as long as the HSP one did, I don't know. Either way, I will let you know as soon as I hear something.
Cheers, guys. T x
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Actually, not sure where I got that from - dystonia is a larger panel than HSP...
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That's where Ben is - Pontypridd at USW doing Law ;) He's in his second year. It's a fab campus although that hill is s f***er!
Did you not appeal the Pip decision? If not, why not?
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Ahhh, cool. I was going to do law, but my memory isnt good enough to remember all the case law, unfortunately - and yes, the hill is pretty harsh! ;)
I did not appeal the PIP ruling - I appealed a disability benefit ruling a couple of years ago, went all the way to tribunal with it and ended up getting nowhere. I guess it just seemed very clear cut to me that I wasnt going to get anywhere so I didnt bother. Which isnt the best idea, probably, but on balance, I thought it was the right idea at the time. I don't know, maybe I should have appealed it - I think a part of me was just tired of being turned down and wasting my time. Depending on what the diagnosis turns out to be, I may reapply, but that will be some way in the future, I think. x
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I appealed my PiP ruling - and got an extra 6 points! It can be done
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I've always appealed Marc's decisions, even up to Tribunal.. Definitely appeal... However, you don't need an official diagnosis to get Pip....
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Hmm. Well, as I say - I may try again in the future. One does hear of cases when appeals work out, Ive just become cynical about it I think. Either way, its good to here that some people do get somewhere with it. :) x
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Some people? The majority of folk are successful. In some areas over 75% of appeals are successful to always worth fighting. Definitely recommend getting help to complete the paperwork and support in assessment/tribunals.
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The statistics are ridiculous, it's something like 60% of applicants will be turned down. On appeal something like 60% are then overturned and are successful...
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Mmm, I wasnt aware that it was that high. Someone I know with dystonia has just appealed a decision - apparently it can be hard to get anywhere with dystonia and PIP because its not necessarily a constant condition. This close to my appointment with neurology though, I'm going to wait until I see them before trying again with it, I think. I hope all is well. :)
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Did you not consider your MH with your application?
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Exactly you need to consider all aspects of your health....
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I did, yes. I put everything into it, mental health and physical. My physical health seemed to take precedence in their mind, however.
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Hmm, next time get some help filling it in... You also have to say that if you did xyz the effect on you is abc... So for me I can walk x distance with my crutches, but I have to keep stopping and I will then have to rest for the rest of the day and the following day(s) would be affected too... Does that make sense?
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She’s right - I’m pretty sure Suzi had to *coach* me on that .....
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I did ;) Happy to share what I've learnt over the years!
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Yes - I did mention what the effects were, abc-xyz etc. I almost got it, probably if I appealed I would have, by the sound of it. If I decide to apply for it again, I will look into getting some help with it.
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I just read that DWP are reviewing pip claims from 2016 onwards on chronicle live it might be worth looking into that
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Oh yay 'coz that's exactly what everyone needs, more uncertainty..... :(
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Its reviewing those turned down because of a ruling?
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Helllooo there!
Well, things have been verrry busy here. The medication trials of baclofen and clonazepam didnt work out, and it turns out that I don't have either dystonia or HSP. Sooo, the feeling is...it could be cerebral palsy resulting from my difficult birth, which would make sense given that thats where they think the autism comes from. Ive got a whole bunch of referrals coming up too - speech and language and ENT for my throat, physio, possibly back to orthopaedics for my shoulder and perhaps an operation on my foot, and of course back to see my neuro in June.
As far as the depression goes, it seems to have lifted a bit honestly and Ive been able to cut down my meds (at least for the moment). I think the diagnosis of autism has helped immensely - I know what the context is for the depression now, and that is useful. Also, I think being stuck on having a career in what I studied at MSc level (computer science) was getting me down and making me continually stressed, in part because it wasnt working but equally because its not what I really want.
So! Good things, mostly! I apologise for not being around, but my headspace has been taken up with a lot of things here. Hopefully I will be able to be around more, and I hope that everyone is doing well.
Love and light, everyone. :)
T
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I can relate to how an autism diagnosis can totally change how you see your depression and I found the things I was especially hard on myself for were things that actually I couldn't change because it was linked to autism and accepting there was a reason for me being the way I was helped me a lot. Adult diagnosis isn't easy but it's certainly an interesting journey lol
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Hi, good to see you! I’m so glad you seem to finally be getting one answers, too
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I'm so glad you seem to be finally getting some answers! That's really brilliant.
It's so lovely to see you! Not so long next time please ;)