Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Yesterdays appointment with my new neurologist was pretty awful. Check out my VLOG from this morning to find out what happened

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Comments on: "Trainwreck Neurology Appointment" (8)

  1. Cheryl DIllon said:

    I can hear your frustration and fear. I have yet to have a botox injection for my cervical dystonia, and I fear side effects. It took 4 months to get to see a neurologist for treatment. Prayers to you!

  2. Sending you big hugs and calming vibes. Thank you for sharing despite it being a horrible appointment. I am gearing myself up for a battle over a med change with a neuro and it is hard knowing what the consequences are if you don’t win. I hope things get sorted swiftly and your body is kind to you in the mean time. Take care x

  3. Commiserations – I’m sorry to hear that you’ve had such a bad experience. DO get in touch with your old neurologist: what he says will probably count for a lot (experience should always trump textbooks, but I fear it often doesn’t these days) and, hopefully, after a questionable start, you will get on with your new neurologist.

    Just to say that you might try 0.5mg of diazepam – even 2 or 3mg can have a “disinhibiting” effect on emotions (somewhat akin to alcohol).

  4. Susan DeGuiseppi said:

    So sorry honey…I have never found a dr in the USA who would do them less than 12 weeks apart and people suffer here as you describe. Since you have not become immune up to now I hope you can find another doctor who can help you. I even went to one of the best hospitals in the world and they told me no less than 3 months. I don’t really know if it is the insurance companies who don’t want to pay or there is an immune risk. You look so good now. And I can understand that you want to continue this quality of life honey. Will pray…

    • Melanie Winrow said:

      My neurologist refuses to do it more frequently than every 6 months and this time it’s failed dismally! This was only the second attempt. I’m going to the doctors on Monday to ask for a second opinion and see if I can have it at least every 12 weeks … Last time t lasted about 8 weeks …

  5. Hi Rebecca, please do give the Dystonia Society Helpline a call – they can provide support and information and our Advocacy Service may be able to help with the treatment situation. They’re open Mon-Fri 10am-4pm and you can contact them on 0845 458 6322 or support@dystonia.org.uk

  6. Melanie Winrow said:

    So sorry – my heart goes out to you. I’m having major problems with my dystonia – the specialist said he wasn’t sure how this injection was going to go … ‘there may be problems with this batch’. Damn right there are!!!!!!! Sorry for my language! I can only ever get botox every 6 months, he said, so I understand your fear.

    I will pray and send healing to you. Just so you know, you’re blog and vlog are so important. It was reading your blog that made me realise there is life after dystonia (mine is getting worse, for sure). YOU saved me from going mad – I really thought I had a brain tumour – so I have to say thank you. Why are doctors so cruel and uncaring?!

    Please know that a lot of people are out there who care. If I could take your pain and make you well again, I would. All I can do is pray and send healing (if you don’t mind me doing that). Take care and update us when you can. {{{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}

    Oh, and Hannah Prime, thank you for the Dystonia Helpline’s number and email address … this is the first time my eyes have opened in a few days and I’ve been trying to find it.

  7. Jacky Churcher said:

    Hi Rebecca,
    I’ve been reading your blogs for a while now, I have dystonia in my neck and right hand.
    I know exactly how you feel, had a neuro, who at best knew my name. I had Botox twice and neither time worked. I ended up unable to swallow and the pain in my neck was like really bad toothache.
    In the end I actually gave up, told my GP I didn’t want to see him anymore. She was brilliant. She prescribed Citalopram for me….I’m now I’m on 40 mg per day and it’s working really well.
    I decided to give up work and I walk my little dog two hours a day. The difference all of this combined, has made, is huge I’ve stopped fighting my dystonia ( which I’ve had for 20+ years) and accepted it as part of my life. I’m happier and calmer than I’ve been for years.
    Of course I’m not suggesting in any way that you have to do this, but perhaps a different medication may make a little difference and perhaps a little respite from your discomfort.
    Jaycee xx

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