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Private Neurologist appointment

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  • Phil82
    Phil82 Community member Posts: 50 Connected

    Hi Guys

    I thought I would give you a quick update as with a bit of luck I might be on the mend.

    My offical medication of Simenet (which is a parkinsons medication which is a bit worrying in itself) arrived today and it's basically exactly the same as what I have been taking anyway. It's taken a month to get it (I wont bore you with the details of how useless my GP surgery is) but finally we might make some progress.

    I have been taking a lower dose of the suppliment I bought on line and have just been taking one ever 2/3 days it seems to have kept me ticking over Christmas and kept the stifness at bay but hasn't had the radical effects that the original stuff had. All was going well I was even back to walking the dog 2-3 miles until last week I decided I would go cold Turkey and see how long I could go without any tablets before the symptoms came back and also I probably needed to get it out of my system before taking the new med. All went well for 4 days then all of a sudden my feet flaired up for a couple of days and now the fatigue and general groggy feeling has returned the past couple of days. The medication hasn't had much of an effect so far today but I think it's going to take a few days to build my dopamine levels back up after going cold Turkey.

    However nothing is straight forward, I am on a 30 days trial but noone has told me what happens on day 31! Do I just go cold Turkey again and start getting withdrawal sypmtoms/side effects. I'm hoping my Dr can order me a repeat presecrption but I can't see a Dr for 6 weeks!!! by which time it will be to late. I rang the neurolgist who perscribed them but he said he doens't want to see me again and after the trial to go back to my original neuro. It turns out he's retired and I am on a 26 week waiting list!!!

    Seriously you couldn't make it up.

    I'm desperatley trying to find a new private neuro I can go to in 4 weeks when my tablets run out, luckily I have my amazon tablets to fall back on incase there are more delays. Imagine been left for 6 months to see someone after you had a finsihed a trial that had worked, it must happen to people and my heart really goes out to them.

    So there we go I have decided I am just odd it's like I have a mix of CP & Parkinson  (maybe I am greedy and not just happy with one of them) where as I thought I had more CP symptoms with the fixed muscles I'm now starting to think there are more parkinons symptoms the muscle rigidty, stomach cramps, fatigue all caused by low dopamine levels. Also the Neuro's still aren't convinced I'm correct becaus they can't expalin my large leg muscles but I think there are other reasons for that.

    I was quite happy when I thought I just had mild CP knowing CP doesn't get worse apart from wear and tear, now I'm not sure what to expect as I get older will my dopamine levels fall further and I end up with full on Parkinsons. The neurologist says I deffinetley don't have Parkinsons but he also told me I don't have any central nervous system issues, CP or Dystonia so I don't really believe a word he says.

    I'm seriously thinking about writting a blog to raise awreness of all the conditions I have looked into to provide advice/comfort for others who just seem to have every door shut on them, if I do I will be sure to give you guys a mention.

    If I get fixed the next problem is getting my son sorted, he's starting to struggle with his feet and I think he might have ADHD well more ADD, and the more I think about it I prob do as well.

    Oh well at least life is never dull anymore!!!

    One thing I have learnt though is never give up looking for answers and keep bangining on those doors even when people keep shutting them on you.






  • April2018mom
    April2018mom Posts: 2,882 Disability Gamechanger
    Thanks for the update @Phil82
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Thank you for taking the time to update us @Phil82! I'm hope the new medication does help, and that you are able to get a repeat prescription in time!
    Scope

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