Do my symptoms sound like dystonia

Hi,I been having problems for a few years now.usual story getting pushed from one doctor to the neurologist has mention dystonia,but can't seem to make up his mind as to weather or not I have symptoms are left shoulder feels as if it's being pulled round and down.which can be painful. This also happens in my neck,ankle,wrist,fore arm,and fingers and lower back.its not all the time.but I have noticed that my body does not seem to like the cold or fast temperature changes.when I get these feeling that's all they are there nothing to see.which is why I think my neurologist is so hesitant to make a diagnosis.i hope this make some sense to someone, as it hard to explain.

11 Replies

  • Is your neurologist a specialist in Parkinson's? Not all specialists are equal. Has he/she made any alternative suggestions and are you being treated for Parkinson's? Do these feelings fit any particular pattern such as when your next tablet is due or when you are stressed? This link might help you...

  • If I'm honest I don't know much about my neurologist.i go in for my quick 20min appointment and before I get to ask any question time is up and its see u in 6mths.hes a hard guy to pin down. Iv tried a couple of different meds but nothing has the moment I'm on co beneldopa 4 a day go up to 5 a day next the moment no relief.but it could just be early days as iv only been on them 4weeks.and I don't really know what to expect of them

  • Lynne

    Have you compared your symptoms to PD symptoms found on line? Dystonia is a symptom of PD as well as a separate condition, sore shoulder is a classic PD symptom, PD starts on one side, are the symptoms you write about all the same side? You neuro is giving you medication for Parkinsons but sounds like you dont really know if that is what you have. The resources on the link soup gave are very good. Sorry i cant be more help, i have had dystonia but very rare now with

    medication and your description doesnt match my experience.

  • I spoke with my gp yesterday,and yes the meds I'm on is for Parkinson's.but they are trying me on it as apparently is can help with dopa-responsive dystonia.apparently I'm a mystery and don't really fit in to any of the right boxs.after 7/8 years you just start to loss confidence.and the pain get worse.most of my symptoms are on my left,occasionally i do exprience milder one on the right.this is the thing I don't get all the symtoms at the same moves around.

  • my husband has upper back pain until he got into PT and stretches and works with his upper back, shoulders etc. No more pain med needed, posture improved.

  • I was diagnosed 2 years ago. I too have some of the symptoms you've described especially with the shoulder pain. The shoulder pain actually gets worse for about hour I take my Sinemet then slowly subsides, The neck pain seems to more prevalent if my med is wearing off and I allowed myself to get over tired.

  • For me this has been going on for 7/8 years.and I get tired.but it's not just tired it's like the flu tired.i don't know how to control it.or when it's going to did u eventual get do u cope.98% of the time I not so bad.but when it does get me I don't know what to do?

  • I know the flu tired feeling. When I have a particularly off day and everything just seems to be too much effort. I take a break for about 30-45 minutes close the eyes and just rest. If you are going to have one of the days with a lot to do pace yourself make a list of the days activities you need to accomplish. Then as you do things cross them off . For some reason it helps keep things in prospective and you can see progress. Otherwise you can feel overwhelmed before you even start.

  • I have pd symptoms, dxn pending (atypical pd). reading your post I was reminded of a neighbour lady that has spastic something or other, (French) it's hereditary, more prevalent among males in the family and progressive. she seems to be concerned about dementia type symptom, is an avid crossword puzzler. that's all I know. maybe a genetic test can solve mystery?

  • Hi Lynne,

    I had very similar symptoms left-side for years until my GP tried Orphenadrine (Disipal). He told me it was considered old fashioned by his colleagues. It was successful for 3 yrs when I suffered unpleasant side-effects. I think it was well worth a try: 3 yrs living with improved PD symptoms must be worth a punt.

  • My first diagnosis was dystonia. The 4th neurologist said to try levodopa as some types of dystonia are dopamine responsive. It was amazing as it got rid of some of the pain and I felt so much better. It has now developed into Parkinson's. I am fighting it with Dr. Farley's exercise. My legs are much stronger and I am happier and feel I have some control. I hope you get a firm diagnosis. I have also found that heat and some

    Hyland's leg cramp cream helps. I try healthy diet and am trying coconut oil I keep trying holistic care as well as Sinemet. Keep working on finding the care

    you need. We are all different

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