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
Printable View
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
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
Wow! That's very different! What does he think it is?
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.
Blimey, what a turn around. I really hope the appointment comes through quickly, hun
That sounds really interesting and as if you're being looked after!
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
Hey Aspies is cool! My husband, son and youngest daughter all have it ;) As does one of our previous members - she's only just recently had the dx too.
Hope the other appointments come through soon.
Aww, cheers! :o)
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
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.
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.
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
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
You sound brighter ?
I agree, you do seem so much brighter and looking forward to things. It's lovely to hear.
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
I'm so glad that you are going to be getting answers lovely..
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.
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
Glad something has been ruled out - that is something positive...
That is good to hear. Frustrating, I know, but positive
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
That's brilliant! So glad you're getting answers finally!
How's your mood? Did you take your Mum with you?
That’s really good news!
That's really good news and hopefully the L-Dopa should help you.
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
I’m so glad you’re not having any side effects - long may it last!
That's such a positive post! :) So good to see you!
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
Thanks for the update. Sorry the L-Dopa didn't work for you love...
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
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?
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
Sounds like you have been doing well lovely. I didn't know you crocheted too! I love it. What things do you like making?
Hi Techie looks like things are going okay with you, if you want to know about crochet Suzi is our crochet expert :)
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.
I agree! I love it!
How are you doing lovely?
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
Yeah, not too bad thanks love. Been better, been worse kind of thing!
Any news on when the trial will start?
I have a lot of respect for anyone who can crochet. I tried it and got nowhere