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

Contact me

If you have questions in regards to Dystonia, any of the posts, or want your blog link listed etc, the please feel free to contact me on any of the following.

Email –  dystoniaandme92@hotmail.com

Or you can go to my facebook page – https://www.facebook.com/dystoniajourney

 

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Comments on: "Contact me" (17)

  1. link to your blog is live on mine now – http://www.madmumof7.com. Hope it’s OK.

  2. Hey ive been reading your blog for quite a while now and youve got me hooked! 🙂
    I just want to raise awarness on the subject of this. There is a centre in Atlanta called the Carrick Brain Centre which cures all kind of movement disorders by doing eye exercises and using functional neurology. I have seen incredible results with dystonia and heres a story that may inspire you/ Look into the Carrick Brain Centre. They train the brain through the eyes to get over any kind of dystonias and other movement disorders.

    http://www.dynamicchiropractic.com/mpacms/dc/article.php?id=54969
    Lots of hugs and kisses xxx

  3. donald mason said:

    I have been taking the injections for `10-11 years..they don’t last as long,but in the last 1and a half years the upper legs muscles are getting very weak I can still walk any hints or ideas…don

    • Your best bet is to discuss this with your neurologist as I am no doctor, your neuro will be able to advise you on what is best for you. There are other strains of Botox perhaps these will work better for you! Otherwise you could always discuss meds. I hope you find something that helps.

  4. donald mason said:

    THANK YOU I WILL GIVE THAT A TRY BEST WISHES AND GOD BLESS YOU Don

  5. Hey, My name is Melissa. I have oromandibular Dystonia. I am raising awareness too. I teach medical professionals about Dystonia and I am building a continuing education website and wondered if you would be willing to either share your story by video . Please contact me at mellyboo76550@yahoo.com thanks

  6. Melanie Winrow said:

    Hi .. aapologies if you get two of these … i won’t repeat what I just said until I know whether you received the last one. I seem to have hit something and I’m not sue if the message went through (I only have a slither of eyesight about as much as a knife edge! 😦

    I WILL repeat my thank you for this blog though – you’ve reassured me when i felt there was no hope. I’m still trying to get a definite diagnosis (it was ME who found out about dystonia, not my doctor) and they thought it was myasthenia.

    You have also given me hope that there are medications out there … I’ll have almost anything they can throw at me … even gabapentin (after reading what you said about it) even though I’m scared of it after a terrifying ordeal after taking it. You and your inspirational blog have shone a bright light where previously there was only dark.

    There really DOES need to be a lot more awareness about this problem – I’ve had people accuse me of faking it, of simply closing my eye whenever hte mood takes me (really? Why would I risk getting on the bus with my eyes closed and missing shows I badly want to see), faking my leg collapsing … you name it. There are some horrible people out there! But there are some lovely ones too!

    Keep up the good work and thanks again … I’m dreading Christmas this year because I have no chance of being able to see my family open their presents (have to be up at 5.00 a.m. and they refuse to open until – at the earliest – 11.00 – 12.30 last Tuesday and then they closeda t 3, effectively for the rest of the day! 😦 It’s taking longer for them to open. What makes it worse is I won’t be able to do half of hte things I usually do if they refuse to open – long story! I see the specialist on the 7th January … let’s hope he has some good news (that he can make this a little better). the doctor told me he may consider a myectomy if the treatment doesn’t work – that’s fine with me although ideally I want to avoid surgery.

    Sorry, I’ll shut up – all this just to thank you for doing such a great job!

  7. Melanie Winrow said:

    Just a quick update – thanks to YOU, I now have a normal life for a little while. I haven’t been able to see the find this site until recently (the double vision is a pain but I make a joke out of it).

    I went to the hospital on the 7th January, sat down, he did a few tests and took my medical history … and said, “You have mild blepharospam, what can I say? I’ll try you with botox and it may or may not work. Not going to consider surgery … I can try you with two types of botox and then you’re on your own. You may get bad headaches and double vision …” I didn’t care … with those few words he has given me a lifeline. He told me if it worked I could have a repeat injection in 6 months – which will certainly see me through my much needed holiday. He said he’d set up a follow on appointment but if I needed a repeat earlier to change to a nursing clinic.

    The difference within 2 days was phenomenal. My eyes stayed open all that night for the first time in a year – then the next morning they opened 15 minutes earlier and didn’t close again … it’s been gradually getting earlier 9.30 is the earliest they’ve opened so far but that’s a MAJOR improvement. The double vision and headaches are NOTHING compared to what I’ve been through. I was sat there thinking I had a brain tumour! I feel I have been given my future back. Dr Fletcher, the specialist, told me it won’t work forever … probably a maximum of 5 years. No, I know it won’t – but in that time, something else may have been found (something less painful??? Can you not have a local anaesthetic for botox?! I’ll take all the injections they can throw at me if they can let me lead a normal life. I can even go into town on my own for the first time in a year. Christmas was bad … I had no eyesight until almost midday, no voice – and my parents were deaf with ear infections so communication was difficult. But we adapted.

    Once again, thank YOU for running this blog – without this I wouldn’t know about any treatments and I’d still be fumbling around in the dark. Keep up the good work. I’ve told the doctor about your site so he can refer other people to it who are feeling lost, alone and desperate. You’ve given me my life back, and that’s no exaggeration. My eyes are so sore but they ARE staying open … I’ve told my boss that she needs to reduce my hours (she thinks nothing of working with me until or 3 a.m. which exacerbates the problems. I wouldn’t mind if she had paid me!)

  8. Theodoxia said:

    Hi. Thank you for your blog. I have had Generalised Dystonia since 1993. I have been able to manage by going to regular Alexander Technique sessions for over 20 years. I am not sure how much it would help others but I thought I would let people know I found it very useful and I do not have to take medication or injections at the moment.

  9. HI THERE THEODOXIA I’M WONDERING WHAT IS ALEXANDER TECHNIQUE AND HOW TO I FIND OUTMORE ABOUT IT???wishing you the best….i will look it up though Don

  10. Have you tried a dental splint called a “neurocranial vertical distractor?” Brendan Stack makes them. Just wondering.

  11. Shazinoz said:

    Hi Rebecca,
    My name is Sharon, I am 44 and live in Canberra Australia.

    I have just been reading your blog (I found it whilst looking for some answers to if my NES were related to my CRPS).

    We seem to have a lot of medical issues in common.
    Like you I have:
    * Ehlers Danlos Syndrome – Hypermobility (EDS-H) {Old type 3 EDS};

    * Complex Regional Pain Syndrome (CRPS) {Old Reflex Sympathetic Dystrophy (RSD};

    * I have some sort of intermittent/ paroxysmal Dystonia (after surgery in March 2014 I spent 73 days in hospital with torso, Right arm & Right leg dystonia);

    * Non epileptic seizures ??? (again began after surgery in March 2014 and lasted for over 2 months, I had them every day and often multiple times a day) {I WISH I had of thought to have someone record one of my seizures, because I only have witness accounts and what the nurses wrote up (looking at my discharge record it says I had spasm of my right arm & pectoral muscle (NOT the whole body seizures I was having which threw me around the bed, caused me to split more than one tooth in half, caused me to loose bowel control (Sorry for including too much information), and which had me SCREAMING for up to hours, the only thing that usually stopped them was them medicating me into unconsciousness, and left me utterly exhausted))} Personally I don’t think my seizures are functional I believe it has something to do with my CRPS, EDS and other conditions and just because the doctors can’t explain it or understand it doesn’t mean it is something my mind has caused, I have had many;surgeries in the past and I only started having issues in 2007 after my last shoulder surgery when I had some mild/ moderate dystonia like reaction in my chest and torso where I was bent at a 45 degree angle and couldn’t stand / lie straight or bend further, when I had my first breast cancer surgery in 2012 I had a lot of post operative dystonia/ spasms again I was bent at a 45 degree angle, I was twisted to the right and I had bad seizures in my right arm, chest and leg, then when I had a 2nd mastectomy surgery (to help prevent my cancer from returning as I have a genetic component to my cancer as well), I had the severe dystonia and severe EXCRUCIATING seizures at least once a day for more than 2 months, these effects have escalated with each surgery and I have just cancelled further surgery I am supposed to have (I need to have my wrists fused and my thumb joints remade, due to my EDS) but I don’t want to EVER go through what I did after the last surgery and the doctors tell me they can’t do anything much to prevent it happening again (because they don’t know what it is really 0- I have just been told it is non-epileptic seizures)

    * Assorted movement disorders (fasciculations, myoclonus, muscle spasms, cramps, “tic’s) {I think they are related to the CRPS, but not sure, they are mostly intermittent and come and go};

    I also have the following conditions (this is NOT a complete list):
    * Stage 2, Grade 2 Ductal Cell Carcinoma (Breast Cancer);
    * Multiple Allergies;
    * Atopy (Asthma, Allergies, eczema, hayfever, rashes etc);
    * HLA B27+;
    * Raynaud’s Disease;
    * Ectopic Heartbeat, Trivial mitral & tricuspid valve regurgitation;
    * Migraines;
    * Various Neuropathies (including some caused by the chemo I had to have to treat my breast cancer in 2012);
    * Irritable Bowel syndrome, diverticulosis, reflux/ GORD, Dyspepsia,

    So I fully understand how hard it is for you, how badly misunderstood/ treated we can be by medical professionals, and the general public alike (How we are accused of faking our conditions, of them being “functional/ psycogenic/ all in our head”, etc etc).
    I thank you for your blog and for your work in breaking down the barriers that we all face, being invisibly disabled and having rare, medical conditions.

    Sorry for the extreme length of this post, but I just wanted to comment and say , you are not alone, I understand how had it can be to live with rare, misunderstood/ little understood, chronic pain conditions every day and the effects this can have.

    Stay well
    Sharon

    • Hi Sharon, firstly you don’t need to apologise for the length of your comment. I cannot express enough how sorry I am to hear what you are going through, but you sound like an incredible person finding it all. Keep your head up high and stay strong. I am glad that you are finding my blog of help. If you ever need to discuss/unload please feel free to email the above address.
      Keep your chin up,
      Becca

      • Shazinoz said:

        Thanx Becca
        You also are a very strong person I know how hard it is to live with these conditions and the added “bonus” of having invisible disabilities and the added stress and grief we get due to this (if people don’t see the physical outward sign of disability they do not believe you are disabled and can get VERY obnoxious and defensive (I have had someone stand within 50cm of me and SCREAM at me for parking in a disabled parking space, whilst my parking permit was clearly displayed on the windscreen of my vehicle, whilst I was getting my crutches out of the back seat of my car (It is often worse now because I can no longer use “visible aids” because of needing to use crutches and canes for so long and having EDS, I can now no longer use such aids as they have caused so much damage to my wrists, thumbs and hands that I now need fusion surgery to my wrists, and other serious orthopaedic surgery and to have my basal thumb joint rebuilt) :o( , so now I seem to get this sort of thing more often where people see a seemingly “normal” person get out of a car parked in a disabled park (with a valid permit clearly on display) and go about my activities/ errands (they don’t see the limping, wincing, almost crying person get back into the car after completing those errands etc, or know that the person getting out of the car with me (driver most of the time) is actually my full time carer.
        They just see a seemingly healthy (albeit with Very short hair, often wearing a headscarf :o) ) person of about 30-45 yrs of age (one bonus of EDS (There has to be a silver lining to every cloud :o) ) is that we tend to look younger than we actually are) get out of the car and assume I have stolen/ borrowed my grandparents permit.
        Thank you for your offer to unload, and know it is reciprocated back to you, feel free to unload/ talk anytime, as I do understand what it is like.
        Stay Well
        Sharon

  12. Hi

    firstly thank you for doing such a wonderful job raising awareness for dystonia.

    Also your blog said said you would love to hear from anyone who else is supporting dystonia week. I am !! lol check my fb page and twitter account @joanne4142

    Thank you in anticipation

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