# General Category > General Chit Chat >  Long time no see!  :)

## Techie

Hey, everyone.

Sorry I havent been around for a while (lot of medical stuff going on).

Health update.  I now have cervical spondylitis, and have had my knee x rayed, and I have an ultrasound coming up for my elbow (its bursitis, but there is something hard in there, so it needs to be looked at).  Seeing my neurologist next month, so that should be good.

I hope everyone is doing ok - Im gonna try to spend more time here.

Speak to you soon, people, love and light.

T

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## Suzi

Hooray for a diagnosis! I know it's not great, but I always feel better if I can give something a real name itms?  It's good to see you - I'm glad you're planning on  coming in here more!

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Techie (25-09-19)

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## Jarre

Its good being properly diagnosed because then the journey to deal with them can start propper.

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Techie (25-09-19)

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## OldMike

It's good you've got a proper diagnosis so hopefully things can be put in place to aid your recovery or make things easier for you.

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Techie (25-09-19)

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## Techie

Cheers, all.

Hey.

The cervical spondylitis is in addition to the stuff with my feet - it is good to know what it is though, explains the numbness in my hands, etc.  Still waiting to see my neuro as I say - hopefully they'll be giving me the dopamine trial and that it will help with my feet, though I may still need surgery - don't know yet.

Cheers for your kind words as always - catch ya later.   :O: 

T

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## Paula

Crossing everything you get the right answers from the neuro

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Techie (26-09-19)

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## Suzi

Hope you get the answer you want/need lovely!

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Techie (26-09-19)

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## Techie

Hey.

When I think about doing a thing, even when its something I really want to do, I find myself thinking about the process of doing it and the effort its going to require and it makes me tired, and/or I lose interest, hence I end up doing nothing a lot of the time.

That is a symptom of depression, right?  I can't think what else it would be.

Cheers, and I hope everyone is doing ok today.   :): 

T

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## Paula

Hey Techie, Ive merged this new post into your recent thread as it keeps it easier to understand whats going on in your life.

As to your question, yep absolutely its a symptom (the NHS list those here https://www.nhs.uk/conditions/clinic...sion/symptoms/)

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Techie (29-09-19)

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## OldMike

Yes it is a symptom of depression I do the same thing, lying in bed I think I'm going to do this and that when I get up and more often than not I'll end up doing nothing.

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Techie (29-09-19)

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## Techie

Thankyou, Paula and Mike.

Yeah, its the hardest thing to overcome, not being able to do things.  Ive been trying to put it into words like that for years, and now I have maybe I can work on it.   :): 

T

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## Angie

> Cheers, all.
> 
> Hey.
> 
> The cervical spondylitis is in addition to the stuff with my feet - it is good to know what it is though, explains the numbness in my hands, etc.  Still waiting to see my neuro as I say - hopefully they'll be giving me the dopamine trial and that it will help with my feet, though I may still need surgery - don't know yet.
> 
> Cheers for your kind words as always - catch ya later.  
> 
> T


Hi Techie, I have cervical spondylitis and it isnt nice, they diagnosed me via my thumbs being numb. Hopefully the neuro will be able to help you x

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Techie (26-10-19)

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## Suzi

:Panda:  Definitely a symptom I see in my husband...

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Techie (26-10-19)

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## Techie

Hey there, folks.

Had my neurology update.  They still think its dystonia, and I am hoping to start treatment this coming week with a trial of dopamine.  If it works, problem solved I guess.  If not, it will be botox then a class of drugs that includes Baclofen to help control the spasms.  The cervical spondylitis is a thing, but I don't know what they can do for that realistically, and I have been diagnosed with arthritis in my right knee.  Soooo, getting old, I guess - just thought I would have had a little more time before all this started happening, I'm not 42 yet!

Anyway!   :):   Hope everyone is doing as well as they can be, thank you all for your kind words, and I look forward to speaking to you all soon.

Cheers and love and light. 

T

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## Jaquaia

It's good that they have a plan!

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Techie (26-10-19)

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## Techie

One more thing...

Angie.  You have cervical spondylitis too?  Have they been able to help in any way?  Ive heard that things like neck pillows etc can make a difference, but I don't know.  Any information would be gratefully received.

Cheers   :): 

T

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## Paula

Hey hunni, how do you feel about it all?

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## Suzi

Hey hunni, I was diagnosed with arthritis when I was 12.... Glad you are getting some answers though. That's really positive.. 

How are you doing though? How's your mood? House? Etc?

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## Techie

Awww, I didnt know that you were diagnosed so early, hon.

How do I feel about it all?  Well, Im excited, honestly.  If the dopamine works, I may be able to walk normally again, which will be great.   :):   I am guardedly optimistic, as our condition does tend to make one at times, but at least its either going to work or its not, so at least I'll know soon enough!  And, if it doesnt, trying something else will be ok - its a process and I have become as resigned to it as I get about things (which isnt very, but a bit, lol).

Sooo, my mood is pretty good right now.  Motivation is still an issue, but its the nature of the beast I guess.  As for the house and everything, I still live at home (never got the money to move out) so things are fine, thankfully.   :):   I hope you guys are doing well too, and I'll catch you later. 

Cheers

T

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## Angie

I don't take any thing for my spondilytis to be honest and rarely see a doctor about it. They just say anti inflamitaries etc but they never help me

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## Suzi

Loving the optimism  :O:  Always hold on to hope....

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## OldMike

Like your optimism, it's good to have such a positive outlook.

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## Techie

Awww, Im the same, Angie.  Anti inflammatories almost never work for me either, unless my legs are so bad that I have a job to get out of bed.

Bit of an update, I have started the dopamine treatment for the dystonia "just in case I have it".  I don't know if its working or not, but Ive only been on it since Friday, 125mgs a day.  Second week is 2 pills of 125, third week is 3 of them.  If, by that point, there is no difference, I have to contact the neurologist through his secretary and tell him.  Should know something next week when the dose goes up.  If it doesnt work, botox, if botox doesnt work Im not going to have baclofen, I'll just take a risk on the operation, I think.

Anyway!  Thankyou for your support, people.   :):   I hope all is well.

T

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## Suzi

I'm glad that you have a plan and are being given some treatment....

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## Paula

Hope the dopamine starts working soon

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## Techie

Update!  Well, the dopamine didnt work.  It made very little difference to the condition I have, and the side effects were pretty rough.  So, Ive let my neurologist know, and will await the botox! 

Hope everyone is doing well, speak to y'all soon.  

T

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## Paula

Im so sorry, lovely. Any idea on time frame for the Botox?

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## Angie

I'm sorry it didn't work x

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## Suzi

Sorry lovely... Hope that the botox works for you.

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## Techie

Cheers, ever'body!

Well, there has been a new twist.  The neuro I was going to has now transferred me (apparently) to someone else - an MDS, or Movement Disorder Specialist.  The guy I have seen is more of a peripheral nerve man.  Heard from his secretary about the transfer last week, nothing since - spidey sense was tingling a bit so I got in touch with this new guy's secretary...and the transfer hasnt been made, lol.  Have to wait now until monday when she speaks to the secretary of the first neurologist to find out whats going on, lol.  Meanwhile, things have stagnated somewhat - can be hard to keep spirits up, but one must always try I feel.  As desperate as things get, one must always cling to hope...

Anyway!  Hope everyone here is doing well, and I shall speak to you soon.   :): 

Cheers

T

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## OldMike

Nothing goes smoothly does it hopefully this Movement Disorder Guy can sort something out when you get transferred, I'm glad you're hanging in there.

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Techie (30-11-19)

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## Paula

How do you feel about the transfer?

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Techie (30-11-19)

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## Suzi

I hate transferring from one to another, it always seems to take time to catch up in the system! 
Hope that the new person is more specialised to help...

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Techie (30-11-19)

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## Techie

Thankyou, guys.

Honestly, I have mixed feelings about it.  On the positive side, I think that the advice/treatment/opinion I get might be more tailored to whats going on with me, given the last guy is more of a peripheral nerve specialist than a movement disorder specialist.  On the negative side, I do feel a bit let down that the first guys secretary didnt follow through.  Also, this new guy isnt a full consultant - he actually works as a gp as well - where as the last guy is the vice chair of the royal college of physicians in Wales, so in a sense it feels like a step down.  I have talked to someone he's treated though (the new guy) and hes a good man apparently, so thats good.  I just hope that I don't end up minimising the condition, which I do sometimes, I think its a bit of a confidence thing.  I'm also expecting there to be a bit of recrimination because I didnt finish the trial of dopamine, but there shouldnt be - I can't take something that I find useless or deleterious just because a doctor has told me to.  So, Im gearing up to be a little defensive about that maybe, hopefully it wont be necessary though.

So yes - mixed feelings, but, in spite of the negativity (real or imagined) I still think its the best chance I have right now of getting somewhere with all of this.  I will keep you guys updated with how things develop, and I'll speak to you soon.

Cheers, guys and I hope everyone is doing well today.   :): 

T

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## Paula

If youre worried that youll minimise the condition, perhaps you should write everything down to take with you?

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## Suzi

I agree, and take someone who knows you and the effects it has on your life with you...

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## Techie

Well, what a time Ive had over the last week!  Basically, I found out that the second neurologist referred me to a third neurologist who has organised some botox for me (not sure when it is, can't remember if Ive covered this bit, lol).  So, I rang the third neurologist's secretary and she said that thats all arranged, but that if I wanted to see the neuro first (I do) then its a 20 week wait for the consultation (by which time I may have had the botox).  So, I decided to go private to see the neuro, got all of that arranged. And then, all of a sudden, last week hes made an NHS appointment for me for this coming Tuesday!  Which is great, so I should find some stuff out without having to pay for it, which is cool.

Also, I went to a podiatrist this week and they put more wedges in my shoes (been through this rigmarole more than once), which made things worse so Ive taken them out and am seeing her again in about 6 weeks.

I am nervous about seeing the new neurologist.  I do write everything down for them as standard, in case I forget anything or my nerve doesnt hold about certain details and I end up minimising, so there is no problem there - I think its just anxiety.  I think as well that its a case of Ive been to this doctor and that one and surgeons and none of them have done anything, so Im a bit anxious that its going to be more of the same.  I feel its up to me to get something out of these people, rather than them providing a service, in a way, and I don't like that feeling.  However, whether thats just a feeling I have or whether its the way the system works, I don't really know at this point.

Anyway!  So its been fairly hectic - hopefully some good will come out of it.  I hope everyone is doing well, and I shall let you know how it all goes.

Cheers   :): 

T

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## Suzi

Wow! That is busy! Why didn't neuro 2 see you? 

Make sure you pop on and let us know how you get on? I hope it goes really well!

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## Techie

Thankyou, hon.  

Neuro 2 just arranged the botox from what I can tell, lol - why neuro 1 or 3 couldnt have done that, I don't know.  The thing about neuro 2 is, hes not a full consultant, though he is still a member of Neuro 1's team, I think.  I don't know, all gets very confusing very quickly, lol.  

I will indeed let you guys know how it goes.  Cheers.   :): 

T

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## OldMike

What with neuro 1, 2 & 3 it does get a bit confusing and as neuro 2 is on neuro 1's team perhaps he should be called neuro 1a  :(giggle):  Well I hope the Botox helps, it shouldn't be up to you to push these neuro's in a particular direction it should be them taking the lead as they should know more about such stuff.

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## Suzi

Lol, I'm just impressed that you've managed to get 3 neuros to see you! I struggled to see mine each year and then they lost me.....  :(:  Lol

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## Techie

Oh no - Im sorry to hear that, Suzi.  Did they sort that out for you?!

Saw my new neuro today.  Aaaand....hes not convinced its dystonia at all, lol.  He's sending me to a dystonia specialist in Cardiff and theres going to be another MRI, this time on my lower spine.  I was hoping and expecting that he would have a different take on this than the last guy, but I didnt expect this much of a 180.  Much more of a movement specialist where as the first neurologist was a peripheral nerve man, so...we shall see!  I shall keep y'all up to date on how things progress.  Hope everyone is well.

T

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## Suzi

Wow! That's very different! What does he think it is?

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## Techie

He's unwilling to say, I think - I did ask him and he skirted the question.  Ive done some looking online, and, if its not dystonia, it could be some kind of nerve compression in the lower back, causing the small muscles of the feet to spasm/cramp - hence the MRI, I guess.  Ive been reading online about the woman Im going to be seeing in Cardiff, and shes been looking at a form of dystonia (myoclonic dystonia) and its link with depression and anxiety and with mental health as a whole (nerves, pathways, etc), among other things.  Fascinating stuff, her name is Dr. Katheryn Peall, works for the university.

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## Paula

Blimey, what a turn around. I really hope the appointment comes through quickly, hun

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## Suzi

That sounds really interesting and as if you're being looked after!

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## Techie

Hello there!

Well, had my autism assessment this week (not sure whether I mentioned that it was coming, can't remember, lol).  It turns out that I have Asperger's - its such an enormous relief, Ive always known something was going on, now I know!   :):   I have made a youtube video about it and, if anyone is interested in seeing it, I will provide the link in a separate post.

As far as the other neurological intrigue thats been happening?  Still waiting on the MRI and the appointment in Cardiff, will of course keep you updated.  Cheers guys, I hope everyone is well.   :): 

T

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## Suzi

Hey Aspies is cool! My husband, son and youngest daughter all have it  :O:  As does one of our previous members - she's only just recently had the dx too.
Hope the other appointments come through soon.

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Techie (13-01-20)

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## Techie

Aww, cheers!   :Surprised: )

Mmm, my neurologist (who helped with the referral) said its a lot more common than the used to think.  There are even clinical psychologists like Professor Tony Attwood who congratulate people when they are diagnosed, which I think is great - its a positive introduction to the word Aspie, a word that people with the condition will hear a lot in their lives in both negative and positive ways.  Anything that can give people a positive grounding about it is valuable, I think.  Because all it is is a neurological difference - we define ourselves by differences all the time (names etc, we are not one big Gestalt entity after all), so why not define ones sense by this particular difference if one chooses to?  First few days it was very...disorientating, but its incredibly validating to know that there is in fact something different about me because I've always known that there was.

Anyway.  Hope all is well here, and I shall speak to you soon - thank you for your kind words.   :): 

T

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## Techie

I meant for the first emoticon to be a smiley too - been doing the eyes nose and smile for quite a while on youtube and places, lol.

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## Suzi

Aspies is cool. The way that those in my family with it's thinking amazes me every single day! 
I think it's very far from a negative thing.

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## Paula

Ive seen in the former member Suzi has mentioned a very positive response to her dx. Its made sense of so much for her - I hope its doing the same for you

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Suzi (14-01-20)

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## Techie

Hey, guys, how is everyone?

Well, another MRI down - only took about 10 minutes this time, lol.  Should hear the results in about 2 weeks or so.

As for the autism stuff?  Yes - it makes a huge amount of sense of me too.   :):   Im in the process of finding out what my limits are at the moment, which is a sobering experience.  I have a counselling session coming up, which should be interesting (not sure exactly when it will be, should be in the next few weeks though) - having a strategy for dealing with things is vital, I think.  But to know its a real thing, that its not all in my head, is very validating.

Anyway.  I'll let you know how things progress - just popped in to say hi, really.  Love and light everyone, and thank you all for your kind words as always.

T

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## Paula

You sound brighter ?

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Techie (09-02-20)

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## Suzi

I agree, you do seem so much brighter and looking forward to things. It's lovely to hear.

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Techie (09-02-20)

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## Techie

Hey.

Thank you, I suppose I have more clarity which makes me feel a little more at peace with myself, which is brightening   :): .  The dark parts are the waiting, I suppose - I think there should be answers this year though regarding my physical stuff, so Im looking forward to that, certainly!

Cheers for your kind words as always.   :): 

T

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## Suzi

I'm so glad that you are going to be getting answers lovely..

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## OldMike

I'm glad things are becoming a little more clear which in turn has made you feel a little brighter, thanks for the update Techie.

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## Techie

Hey, guys - hope all is well.

MRI results are back. There is no pressure in either the sacral or lumbar regions of my spine. While this is good and a possible cause for the symptoms has been eliminated, I still don't know what it is! Oh well, bring on the next one...  :): 

T

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## Suzi

Glad something has been ruled out - that is something positive...

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## Paula

That is good to hear. Frustrating, I know, but positive

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## Techie

Well, just got back from my neurology appointment in Cardiff.  Seems pretty sure that it is dystonia, going back on the L-Dopa again because of the way it was handled by my previous neuro (starting off with a smaller dose three times a day rather than a larger dose once a day then twice a day).  Also, which is going to be interesting, there is going to be genetic testing, finally - gonna see me in three months and take the bloods for it then.  There is a possibility that what I have could be Hereditary Spastic Paraplegia (HSP), but at the moment theyre hearing hooves and thinking horses rather than zebras.  So yes!  Finally got something relatively concrete, which I am happy about.

Hope all is well here.   :): 

T x

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## Suzi

That's brilliant! So glad you're getting answers finally! 
How's your mood? Did you take your Mum with you?

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## Paula

Thats really good news!

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## OldMike

That's really good news and hopefully the L-Dopa should help you.

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## Techie

Cheers, guys.  My mum drove me to the hospital, but I went in by myself (I find it easier).  Sooo, Im just over a week into the lower dose and no bad stuff is happening yet, which is good!  Im not seeing any improvement, but I didnt really expect to off the lower dose - I think its more of a preparatory step, so that the full dose isnt such a shock to the system.

My mood is pretty much the same as it was, really - maybe a little lighter, but its hard to tell.  Managed to get the first blood test that I needed on Monday, before all this lock down stuff happened (havent been out since, so I don't know how things are looking out there), so thats good - still have to wait for the one for the genetic testing though, hopefully I can still see the neurologist in June and get more answers.

Anyway!  I hope everyone is doing well here, and I shall speak to you soon.  Love and light.   :): 

T

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## Paula

Im so glad youre not having any side effects - long may it last!

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## Suzi

That's such a positive post!  :):  So good to see you!

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## Techie

Hey, guys.

Well, the L-dopa was a bust - was on it virtually a month and the side effects were close to unbearable.  Soon after going on the larger dose the depression went absolutely turbo, the compulsive thoughts were very painful and I had a massive shift in my sleep pattern.  Sooo, I got in touch with my neuro and said that I'd come off them, explained the whole thing and he was fine with that.  On May 1st, I have an appointment to sign up for genetic testing, and theyre not going to put me on anything else until they know for sure what this thing is.

There are meds called dopamine agonists, which trick the brain into thinking that its actually got more dopamine than it actually has (a manipulation of naturally occurring dopamine then, rather than adding L-dopa which is a precursor to it).  There are also a variety of muscle relaxants that can be used to treat symptoms, and botox is still on the table, but we'll have to see what the genetic testing throws up (the important genes in my case are DYT1 and DYT5, which deal with early onset and dopamine responsive dystonia respectively).  There is a possibility that it isnt dystonia at all, but something called Hereditary Spastic Paraplegia (HSP), which is broadly similar in effect and is treated in a similar manner, but which isnt characterised by spasms (I don't really get spasms all that much).  Again, that would show up in the genetic testing.

So!  Interesting times - I do have something of a head-full right now, I must admit, lol!  Hope everyone is doing well here, and I shall speak to you soon.  Stay safe, love and light.

T

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## Suzi

Thanks for the update. Sorry the L-Dopa didn't work for you love...

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## Techie

Just back from the neurologist again - nothing has gotten worse, bloods taken for genetic testing.  Sooo, just have to wait and see, I guess.  How is everyone?   :): 

T

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## Suzi

At least nothing's worse, that has to be a positive. Glad you're getting genetic testing. They are fully exploring everything... 

Things here are busy, soggy and windy! But I'm quite happy in my lockdown bubble! You?

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## Techie

Yes, not bad.  :):   Trying to keep busy, really - been writing and drawing and stuff like that.  Started learning Python, which is a computer language, the crochet is of course on going, lol (not sure whether I mentioned that I do crochet).  Thats about it though really.  The neuro, I think, agrees with me that the condition I have is more likely to be HSP rather than dystonia, but Ive been tested for both as well as Parkinsons, so that should help (I hope so at least).  Im going to be taking baclofen at some point, so we'll see how that goes (my GP is going to be administering the trial this time though, so I can get in touch with someone quickly if it all goes to pot).  Given the deformity, I would have thought an operation to correct it might still be necessary, but we'll see how that goes, I guess.

Anyway!  Im glad all is well, hon.  Thankyou for your kind words, and I shall speak to you soon.  Cheers.

T

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## Suzi

Sounds like you have been doing well lovely. I didn't know you crocheted too! I love it. What things do you like making?

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## OldMike

Hi Techie looks like things are going okay with you, if you want to know about crochet Suzi is our crochet expert  :):

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Suzi (23-06-20)

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## Techie

Hey.  Crochet, yes!  Ive made a lot of drawstring bags, a few hats, a pair of gloves, a few pairs of socks, a scarf, a few shoulder bags and a lot of squares and rectangles.  Mostly use single crochet, but I also use double crochet a bit for squares and stuff.   :):   I got into it a few years ago when I was bored and wanted to do something that improved my dexterity.  Theres something very zen about it.

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OldMike (01-07-20)

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## Suzi

I agree! I love it!
How are you doing lovely?

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Techie (01-07-20)

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## Techie

Yeah, pretty good all things considered.  Waiting for my GP to start the Baclofen trial, but apart from that everything's peachy.   :): 

How are you?

T

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## Suzi

Yeah, not too bad thanks love. Been better, been worse kind of thing! 
Any news on when the trial will start?

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## Paula

I have a lot of respect for anyone who can crochet. I tried it and got nowhere

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## Techie

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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## Suzi

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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## Paula

Im so sorry that didnt work out  :(:

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## Techie

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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## Suzi

Then come and talk to us some more  :O:  
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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## Paula

When do you next see Neuro?

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## Techie

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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## Suzi

Hey hunni, welcome home  :O:  I've missed you!  :):  Glad the HSP was negative. How are you doing in yourself love?

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Techie (28-10-20)

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## Paula

Good news!

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Techie (28-10-20)

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## Angie

Thats great news  :):

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Techie (28-10-20)

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## Techie

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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## Suzi

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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Techie (29-10-20)

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## Techie

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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## Suzi

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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Techie (29-10-20)

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## Paula

Do you know when youll get the dystonia results?

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Techie (29-10-20)

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## Techie

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.   :O: 

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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## Techie

Actually, not sure where I got that from - dystonia is a larger panel than HSP...

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## Suzi

That's where Ben is - Pontypridd at USW doing Law  :O:  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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Techie (31-10-20)

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## Techie

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!  :O: 

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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## Paula

I appealed my PiP ruling - and got an extra 6 points! It can be done

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## Suzi

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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## Techie

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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## Stella180

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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## Suzi

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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## Techie

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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## Paula

Did you not consider your MH with your application?

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## Suzi

Exactly you need to consider all aspects of your health....

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## Techie

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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## Suzi

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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## Paula

Shes right - Im pretty sure Suzi had to *coach* me on that .....

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## Suzi

I did  :O:  Happy to share what I've learnt over the years!

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## Techie

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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Paula (10-11-20)

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## Suzi

Good plan love.

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## Angie

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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## Suzi

Oh yay 'coz that's exactly what everyone needs, more uncertainty.....  :(:

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## Angie

Its reviewing those turned down because of a ruling?

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## Techie

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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## Stella180

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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Techie (16-04-21)

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## Paula

Hi, good to see you! Im so glad you seem to finally be getting one answers, too

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Techie (16-04-21)

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## Suzi

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  :O:

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Techie (16-04-21)

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## OldMike

Good to see you Techie I'm glad you're getting some answers.

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Techie (16-04-21)

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## Techie

Hey!   :): 

OK, well, I crashed, lol.  So, Im back on the double dose of prozac, which is ok - the honeymoon period when you think less medication working is a doozy when it catches up.  Had a phone call appointment with physio yesterday - not as bizarre as it sounds, it was actually a bit helpful.  Emailed me some exercises, so we'll see what happens.  Going to email my neuro on Monday to see if hes got my MRI results back and then its straight on till June as far as I know.

Hope everyone is doing well, and thankyou for your kind words.   :):   T

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## Suzi

Oh what happened with the crash? Well done for calling your Dr and getting the med increase sorted. Glad the call from the physio went well love. Are you eating and drinking properly? Getting out in the fresh air at all?

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Techie (13-05-21)

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## Paula

:Panda:  for the crash...

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Techie (13-05-21)

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## OldMike

I had that in the early days when my meds were reduced only to find I had relapse. Good on you for getting your meds increased Techie hope you get your MRI results soon.

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Techie (13-05-21)

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## Techie

Hey.   :): 

Well, some things have happened.  My MRI was clear, which is good, and Ive had some physio which made things worse, lol - havent been able to walk for 3 weeks.  The physio rang today and I told them what happened, and they were ok about it without being apologetic, which I appreciated.  Theyre going to write to my GP and make the letter available to my neurologist, so thats good.  Im particularly pleased that they agreed with me that its pointless doing the physio if its just going to hurt and not get anywhere and that they put that in writing - I always expect people to be difficult, always have since my childhood.  I almost want them to be difficult sometimes, need it to validate my own beliefs about myself and my identity, which kind of crystalized when I was in 6th form college in some ways.  Ah well - have to get used to a new identity sometime, I guess.  One thing I do have trouble with is now that Ive stopped drinking I still want the same things I wanted back then, but now the money isnt there to do it.  Have to live with that, and its probably for the best, particularly given the ASD (I'm not sure how I would have become a lawyer when I have difficulty relating to people a lot of the time - maybe if I had known I could have done something about it, but then I would have worried about my memory which isnt great, all that case law to remember, lol).  Whatever the case, Im not going to be getting 10 grand anytime soon, so its off the table.  I'm more of a creative type anyway, really - started watercolour painting recently and it seems I have a bit of a talent for it.

Anyway!!  I hope all is well, and I hope to be back here more often.  Speak to you soon, guys.

T

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## Stella180

It’s common for people with ASD to be creative and artistic so I guess that’s a positive aspect of it for you.

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## Paula

Ouch, Im sorry physio didnt help but am so relieved the physio has decided not to push things ....

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## Suzi

Sorry that the phsyio didn't help, but I'm glad that they have seen that themselves too. 
My eldest has Aspergers and is currently studying law at uni lol However he also plays guitar as a creative outlet...

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## Techie

Hey!   :): 

OK, well, lots been happening here regarding my health.  Saw my neurologist last month, he's done another genetic blood test for me for SCA - Spino Cerebellar Ataxia.  By his own admission, there is no sign of atrophy on my MRIs so its just to rule it out basically, and although my test for HSP came back negative SCA type 1 can mimic HSP.  The diagnosis I have currently is spastic paraparesis, though the cause is currently unknown.

In the same breath, he announced that he is going back to Toronto to continue his training - suggesting that he isnt fully qualified!  I know that everyone has to learn and all of that, it just sucks to be someone's practice dummy really.  He said, rather doubtfully, that he's going to try and refer me to a colleague of his in Llandough hospital who runs a rehabilitation clinic.  Got the letter yesterday and I have an appointment with her in September.  What rehabilitation in this case means, I am not sure - I was referred to neurology by surgery to see if there was a neurological cause of the cavovarus deformity I have in my feet, but I havent been told whether the deformity has a neurological cause and this is five years later, lol.  I will ask some very direct questions of my new neurologist, I think!  Aside from all of that, I now need to have injections of b12 (theyre doing a loading dose at the moment meaning five injections, one every other day) and I will be having those at 3 monthly intervals.

Anyway!  I hope everyone is doing well, and I shall speak to you soon.  Love and light.

T x

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## Paula

Hi hunni. Im so sorry youre still a way away from real answers. However, sometimes, a different face will think of something go that hadnt been considered before. I know when I saw my new neurologist, he flagged up that sleep apnea could contribute to the pressure on my brain - I was tested and have the condition!

As for your previous doctor, more training may mean he wants to specialise more, rather than he wasnt fully qualified.

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Techie (12-07-21)

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## Suzi

Hey hunni, lovely to have a catch up with you. Can you write a really direct blunt list of questions you want answered and maybe see if your lovely Mum or a trusted friend could go with you to get the answers you deserve?

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Techie (12-07-21)

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## Techie

Hey.

Maybe he wants to specialise more, yes, but some of the things he's said, combined with his age - clearly he's a junior consultant at the start of his career, and I can't help wondering why they gave him a case of this level of complexity.  As for someone coming in with me?  Can't because of the pandemic, but even if I could take someone in with me it would make me uncomfortable, honestly.  Ive written several lists of questions for them, some of which have been answered but most have not.  Im just hoping this new one can help a bit more at this point.

Cheers guys, and I hope all is well.   :): 

T

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## Suzi

Keep on fighting love. If you struggle cognitively then you can have someone with you. I know because I don't normally take in what people say to me in appointments so I take Marc in with me....

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## Techie

Hello there!

Well, I had the appointment with neurology - it went fantastically well.  Setting me up with an appointment with orthotics at Rookwood and theyre contacting my surgeon so that I can get an opinion on whether the tendon transfer operation is still on the cards.  What's past is prologue, so we'll see what happens next.  Its such a relief - today is the first day in a long time that Ive been happy to do nothing.   :):   I went in by myself as always, did fine.

I hope everyone is doing as well as they can be, and I'll speak to you soon.  Love and light.

T x

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## Suzi

Well done for going in and talking them lovely! So glad you're being treated well and being listened to and taken seriously..

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Techie (11-09-21)

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## Paula

That sounds really positive!

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Techie (11-09-21)

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## Techie

Hey.  

Well, I have a fitting for a wheelchair coming up which I have mixed feelings about, honestly.  At the end of the day, its going to be helpful if I need to go long distances, so that's good, focus on the positive, etc.  My appointment at Rookwood is now with Rehabilitative Medicine rather than orthotics - hopefully its the same sort of thing though.  Just thought I'd drop in and update y'all.   :): 

Hope all is well, speak to you soon.

T

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## Suzi

That's great news! I understand the mixed feelings, I've just bought a new-to-me mobility scooter (He's called Leroy Marlin) and as much as I have resisted it's allowed me to do things that I've not been able to do for years! Embrace the positives love... I know it's f*ing tough, but go with it.. You can always customise it!

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## Paula

I promise you, from experience, that getting a wheelchair will open up so much for you. I get the mixed feelings, but itll be a life changer  :):

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## Techie

OK!

Well, first of all, thankyou to everyone for the kind words regarding their experiences with wheelchairs - helps a lot.  Also, had an appointment at Rookwood today and finally things are starting to move forward.  Ive got the closest things Im getting to diagnosis, I think - Progressive Spastic Paraparesis, caused by a spontaneous genetic mutation, basically HSP without the H for hereditary!  The treatment is going to be Botox in the first instance, possibly followed by an orthotic splint, with surgery as a fall back in case nothing else works.  So...finally a PLAN!!   :): 

As you can imagine, I'm very happy that things are moving forward.  I hope everyone here is doing well, and I'll speak to you soon.

Love and light.  T xx

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## Stella180

Glad about the plan.

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## Suzi

That's awesome! I'm so happy you have some answers and a plan...

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## Techie

Hey there!   :): 

Sorry I havent been around for a while, loads going on here - most of it medical.  I had my first round of botox today, which is kinda cool - I just hope it helps.  Got a neuro-physio assessment coming up to see if I can do any exercises/stretches now that I have botox on board, or whether my feet/legs will tolerate a splint.  Both of which would be helpful.  The issues with the wheelchair have been sorted, thankfully - just had to practice a bit and get my head around how it works.

Started an online copywriting course as well - Ive always been good at writing so I thought I'd try squeezing some money out of it if I can.  Its going well so far, been doing it for a few weeks now, so I maybe able to actually do something job-wise which would be very cool indeed, probably working from home for the foreseeable.

My physical condition has gotten worse - its starting to affect the right leg more now - but I guess that is to be expected given that its a progressive condition.  Mentally I'm doing pretty well - just keep taking the pills, and when I have a bad day have to remind myself that tomorrow will be different by pure definition.

Anyway!  I hope everyone is doing well and I shall speak to you soon.  Love and light, guys.

T x

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## Suzi

Sorry you're struggling with declining health love, but it's really, really good to see you! 
Hope the botox helps love. 

The copywriting sounds good too! I'm pleased for you!

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Techie (18-05-22)

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## OldMike

Good to hear from you Techie, copywriting sounds cool especially if you can make a few pounds out of it.

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Techie (18-05-22)

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## Techie

Hello there!!

Ok, well botox didnt work, lol!  Theyre not sure why, the physio thinks it could be because my muscles are too far gone and my neurologist thinks it could just be that my system doesnt respond to it (I would think its the second option).  So, to make sure it doesnt work (they have to follow a process) they gave me a small amount of botox for my toes on monday which is...fine, don't really expect it to do anything, lol.  The plan now is to try nerve blocks so that they can see which part of the muscle is doing what, but thats not gonna be for another 3 months so...yeah!  Thats it so far.  It does feel like we're getting somewhere, at least theres an alternative to botox that they can try - again, doesnt always work, but at least they can give it a shot.

Anyway!!  Hope everyone is doing well - catch ya in a bit, guys.

Cheers.

T

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## Paula

Thats a pain in the ****. Are you ok about it?

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## Suzi

Sorry it didn't work love... Hope the next option does... 

How are you feeling?

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## Techie

Hey.   :): 

Cheers for the replies.  Yes it is annoying.  I've spoken to people who've tried nerve blocks as well and they don't always work either, lol!  I don't know, I'm annoyed I guess, but I'm getting the feeling that they can't quite decide_ what_ to do really.  If the nerve blocks don't work, I don't know what is gonna happen - still waiting on another surgical opinion, but when that will come I don't know.  Have to see, I guess.

How are you all doing in here?

T

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## Suzi

Not really sure whether it'd help or not, but a friend of mine has had spinal simulation device implanted... 

You sound like you're trying to be upbeat with it all - are you really?

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