Good to see you Techie I'm glad you're getting some answers.
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Good to see you Techie I'm glad you're getting some answers.
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
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?
(panda) for the crash...
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.
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
It’s common for people with ASD to be creative and artistic so I guess that’s a positive aspect of it for you.
Ouch, I’m sorry physio didn’t help but am so relieved the physio has decided not to push things ....
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...
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
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….
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?
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
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....
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
Well done for going in and talking them lovely! So glad you're being treated well and being listened to and taken seriously..
That sounds really positive!
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
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!
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 :)
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
Glad about the plan.
That's awesome! I'm so happy you have some answers and a plan...
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
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!
Good to hear from you Techie, copywriting sounds cool especially if you can make a few pounds out of it.
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
That’s a pain in the ****. Are you ok about it?
Sorry it didn't work love... Hope the next option does...
How are you feeling?
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
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?