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Thread: Long time no see! :)

  1. #61
    Princess Sparkles Paula's Avatar
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    That is good to hear. Frustrating, I know, but positive
    The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.

  2. #62
    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

  3. #63
    Boss Lady ;) Suzi's Avatar
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    That's brilliant! So glad you're getting answers finally!
    How's your mood? Did you take your Mum with you?
    Do a little of something that makes you happy every day!


  4. #64
    Princess Sparkles Paula's Avatar
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    That’s really good news!
    The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.

  5. #65
    Head Groundskeeper OldMike's Avatar
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    That's really good news and hopefully the L-Dopa should help you.
    77 and counting, less of the "Old" call me "Mike"

  6. #66
    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

  7. #67
    Princess Sparkles Paula's Avatar
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    I’m so glad you’re not having any side effects - long may it last!
    The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.

  8. #68
    Boss Lady ;) Suzi's Avatar
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    That's such a positive post! So good to see you!
    Do a little of something that makes you happy every day!


  9. #69
    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

  10. #70
    Boss Lady ;) Suzi's Avatar
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    Thanks for the update. Sorry the L-Dopa didn't work for you love...
    Do a little of something that makes you happy every day!


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