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

Any Questions???

If you have any questions about my Dystonia or Non Epileptic Seizures, or if you just want to know more about the conditions, then please like and contact me on this link https://www.facebook.com/dystoniajourney .

Please all share this link, and help bring awareness to this painful condition that receives so little care from consultants!

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Comments on: "Any Questions???" (21)

  1. Jo Ann Heuerman Nystrom said:

    Trying to locate a blog entry that explains when or how you developed Dystonia?

    • If you click on archieve bits where it says Select Month, then click on September (or it may say September 2012) The when that page opens scroll down to the last post on it and select older posts then scroll down to the end of the new page and it should be there entitled I think its called Hello World xx

  2. deborah russell said:

    My son developed facial dystonia some years ago it is under control at this moment I would like to know if there is a genetic test for this ailment . thankyou

    • Hi Deborah, If a consultant approves there is genetic testing available to find out whether the Dystonia has been brought by genes or not. However I do not if a specific gene has been identified for facial Dystonia. This would be something I recommend I ask you Consultant xx

  3. Hi, I’m a little scared about this weird symptom I have, and no one I talk to seems to want to give me a straight answer. Now, I know you’re not a doctor, but I’d just like to get your opinion on this. If you can’t or don’t want to do so, I understand, and ask that you just simply reply with a “no, I can’t,” or whatever you want to say. Thanks.

    I often find myself involuntarily tensing and contorting my muscles into painful positions—like arching my back very deeply or sharply pointing my foot/toes. This occurs randomly, and many times every day. It can happen in one to three areas of my body at a time, in varying combinations—it can occur in my jaws (clenching my teeth), tongue, back, hands, arms, buttocks, legs and feet. I don’t realize I’m doing it until it really starts to hurt! Once I’m aware that I’m tensing, I can make the muscles relax, but most of the time, it just happens again after 10-30 seconds, or if not that soon, a few minutes later (either the same part of my body, or a different one). This leaves my muscles (and sometimes the joints involved) very fatigued, sore, and sometimes feeling as if I have just recovered from a Charley-horse-type of cramp. The only explanation I can think of is that it is stress/anxiety related, but it even happens when I’m having a little–to-no anxiety at all, so I’m not convinced that this has psychiatric or emotional cause. Also, I’ve tried treating this problem as if it were caused by stress (relaxation/stretching/anti-anxiety meds), with no success. Sometimes the resulting pain, from over-extension of the muscles/tissues, can be partially relieved by NSAIDs, but I would like to stop the actual problem, not just treat the resulting pain. I don’t really know anything about dystonia, so if you could tell me if this problem sounds like dystonia or not, I would be very grateful. Thanks again.

    • Hi, obviously I cannot tell you what it is or is not. What I would recommend is asking your family doctor if he can refer you to a neurologist for evaluation and see if you can get some answers that way. It sounds like you are doing everything you can, the only other thing I can recommend is doing distraction techniques to try and help relieve your symptoms xx

  4. Judy Cribb said:

    I have meige syndrome affecting my eyes, jaw, tongue and neck. Any suggestions for improving my swallowing and getting rid of the big muscle lumps at the base of my neck?
    I’m having Botox but doesn’t seem to work very well.
    Thanks.

    • Hi sorry Im no Dr and iv not experienced this myself so not sure what to suggest other than talking to your neurologist/dr. Botox can cause swallowing problems if your having it in your neck area. x

  5. 9 yr old daughter having left leg foot dystonia wondering if it could be from Lyme dis Elisa test was positive western blot negative -we are waiting results from blood tests on (dyt1) if not
    Dr says will try the other genetic tests for dystonias – just wondering could we be missing something like treating for lymes? She’s had this now 8 weeks now,
    Thx ,Susan

    • Lyme tests are very unreliable. It is known that Lyme Disease if it goes to the brain can cause Dystonia, the condition can also mimic Dystonia. It is worth treating for Lyme if the Doctors will consider a trial of it. Thoughts are with you. Becca

  6. My daughter is her 30’s has foot Dystonia and her foot turns inwards at right angle, just the one foot is affected, however her pain is chronic when putting her splint on, her husband changes it from a day to a night one….do you have chronic pain too or is it under control? We are seeing the consultant on Monday 20th oct after having no help for 12 months..her pain levels are so hight at the moment I just want some help for her xx

    • I’m extremely sorry for the late reply. I really hope your daughter is currently experiencing less pain. Yes I experience chronic pain. Most days I control with a variety of prescription medications and I also hot water bottles and TENS Machines.x

  7. HI. Have you ever heard of any condition where Dystonia gets into the eye muscles? I was diagnosed with Lyme D just 2 years ago but I only remember getting bit some 30 years ago. I was never treated at that time and got very sick and even landed in the hospital. Now I generally have dealt with Neuro symptoms since. The most annyoing is that I have spasm in my eyes muscles and my eyeslids retract and it is very uncomfortable and feels bizarre. There are no doctors here to treat the symptoms for Lyme D. I do go to a neurologists who tested me and believes I have Dystonia in my eyes but he has a hard time achkowledging that it can be Lyme. I got a positve on a Lyme test (Elisa, and westernblot) to years ago. With no help this Lyme Disease makes you to believe that you’re just nuts!!

    • Brent this is a condition called Bleshapsasm (I have a post on here somewhere if you check my archives) that affects the eye muscles. If it is Dystonia then Botox injections and/or muscle relaxants may help to relieve some of your symptoms. Lyme Disease can cause many problems I was bitten 16 years and I have only just tested positive! Give the Dystonia treatment a go and if you get nowhere argue your case for antibiotics. I really hope you get some answers. x

  8. Judy Cribb said:

    Brent. I have Blepharospasm which is dystonia of the eyes. You may need to see an Opthalmologist or neurologist to get it diagnosed. I have Botox in my eyelids, top and lower every 3 months.

    • I don’t have Blepharospasm but some strange form of dystonia that mostly affects the upper eyelids and causes an opposite effect of Bleph, that is the eyelids upcomfortably retract. My Neuro said that he’s personally never heard of or seen my condition but he clearly sees it and therefore decided to give me botox injections for relief. It really did the trick!

  9. HI thanks. Actually as I understood it Blespharospasm is a condition where a person is sometimes unable to keep their eyes open. I have the opposite symptom where my eyelids feel as if they are retracting. My form of dystonia seems to be very rare. In fact I’ve found nobody else who has those symptoms. Anyways, doesn’t matter. Botox shots do the trick.

    • Glad to hear Botox does the trick! That seems to be the joy with Dystonia, there are symptoms that Doctors like us to fit but we don’t all do that. Everybody varies slightly. x

  10. tony fulford said:

    I hope you can help the hospital says I ave body movement disorder which affects neck back ,hands legs and feet ,which I get a I get a lot of pain but hospital doctors say its in my brain anxiety and worry,they used to give me 30 mil of procyclodine which did stop the spasms but they are refusing me this treatment because they say its in my brain can they do this? many thanks tony

    • Yes they can do this if they think it is what is best for you. I am not Dr so I cannot advise you medically but if you feel they are wrong see another Dr and ask for a second opinion

  11. Lindsey said:

    Hi,
    I have a friend who suffers from Cervical Dystonia, and she has since about the 3rd grade. They think it may have been a sports related onset. Im a nurse, and Im doing some research for her on some alternative ways to reduce her pain and tension. Were going to try some Tens Units, and Essential Oils. Do you or anyone you know with dystonia have any essential oils suggestions for her? She has been doing botox injections and they usually last about 3 months before she needs to get another one, but unfortunately they are becoming less effective for her. Thanks for any and all suggestions!

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