Hi its Susan, just introducing myself. Mid 60s Diagnosed Dec 2017, with dystonic tremor and dystonia. I keep thinking that the consultant has made a mistake (dare I even say that?) i dont have head tremors . My G.P. thought it was Parkinsons' as my tremors are generalised mainly on my left, but the Neuro Specialist at the consultation was more concerned with my 18 month old frozen shoulder and a muscle in spasm near my neck which appears to make me hold my head awkwardly. Well it's painful ! I've also got a sideways curvature, Scoliosis on my spine which also makes one shoulder lower. So he had me go for a Cervical MRI last week and now waiting for the outcome.
Anybody else confused about their diagnoses? Or advice me please?
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Dystonia is a bizzare complaint and not well understood even by expert neurologists. Mine is generalised, started all of a sudden 2008 diagnosed 2017. Balance and walking problems.
Neurologist prescribed Sertraline (off lable) and Valium as muscle relaxant.
Trial & error leads me to handle my problem with:
Use Valium only when can't do without
Avoid stress
Modest daily exercise - in front of mirror
Tai Chi daily exercise & lessons
Understand your body - Tai Chi or similar (Yoga, dancing, etc.) will help - even if you'r in your 70's.
Thank you JoleAm, i have been reading through other messages and no two people seem to gave the same symptoms mine us cevical but i dont jerk or nod my head, i have a full body tremor what was thought to be a frozen shoulder and a neck which only turns one way and i hold it strangely he observed! So i left my consultation with cervical dystonia, none yhe wiser x
I'm Barbara, similar age to you. I was told I had dystonia. I have head tremmers, right arm shakes and now the left is doing it to a lesser extent. I have problems with my voice due to the vocal chords shaking and my voice is very quiet and fades out. My hands don't work so well and I keep dropping things. I am sure one hip sticks out and so does the shoulder bone on the opposite side. I was taken into hospital beginning of October last year as they thought I'd had a stroke - no one seemed to know anything about dystonia. The stroke department got me a neurology appointment. They said it was definitely dystonia and not Parkinson's. at about the same time my brother was told he had Parkinson's so I guess I am the lucky one - though it doesn't feel like it. Strangely the signs and symptoms seem identical. Our symptoms seem fairly similar. My brother has been told that he must not get upset or stressed and I too find my symptoms worse then. He was told to exercise and eat healthily and to sing. I have started all these things except the singing. I see my consultant at the end of March and up till now she only seems to be pushing me towards Botox injections into my throat and I do not want that. I was told by someone who has these that you can have as many as 7 or 8 every three months and they are like bee stings and the pain lasts several days they also take a fortnight to kick in. I'd be interested to know what has been suggested to you.
Hi Barbara, thanks for responding it was my first appointment so no treatment has been offered yet. He mentioned Botoxto me in my beck, what heck does that do? I tjought it was a filler? I had a frozen shoulder and he said it wasnt a frozen shoulder it was dystonia. As was my stiff neck! I have a sideways curvureture of the spine and one of my shoulders is higher and yhe opposite one my hip is higher , thats what i was told was Scoliosis. Many years ago! Is that Dystonia too? Talk about confused eh? Haha. Dr Jacobs did talk about botox and opening up the skull and massaging my brain! My face must have loojed a picture as he laughed and said no no not yet and only with uour permission? Well he wont be doing it no not never? There are also tablets, but as he had only just met and diagnosed me it would not be anything until he sees me in march. Meanwhile i was sent for an MRI. Of the Cervical section of spine from all angles that was jan 6th ive since had a recall for a closer look at the thorasic spine which is between the shoulder blades I think! He thought he saw a Indenture. That will be on 27th . My only shakes to my knowkedge is my left arm. Sometimes my tremoris alll over me and i also wake up shaking.. a very odd feeling too. Can we keep in touch as we are at the same stage by the sound of things . I am in Cheshire are you in yhe north west too? Keep your chin up x
Yes definitely that would be great. I ought to mention that no comments have been made to me about my lop sidedness I was going to bring it up at my appointment in March. I live in Essex and hardly anyone has ever heard of dystonia. I look forward to hearing more as it happens and I'll do likewise. I nearly forgot to mention that dystonia affects my mouth so when I talk sometimes I can't get the words out or my mouth says some other word and I know it's wrong but can't help it. I was told my mouth takes the easy option and that is why it happens.
Hi Barbara, lol I have funny words slip out too,, some I recognise, e.g. in my head in thinking one word and a totally unrelated word comes out of my mouth, I laugh it off, thinking , where did that come from? Twice i have come out with a whole sentence of gobledegook lol not foregn just nonsence . I thought i was getting dementure or worse? X
Yes I started to think that too especially as when I mentioned it to my doctor she thought that It was dementure and I have to admit I panicked somewhat. It was only when I saw a speech therapist that I found out, unfortunately she only gave me about three sessions and told me she couldn't help me any further. Have you mentioned it to anyone.
Hi Barbara, I've had a telephone consultation re the close ups Mir of the indenture there is indeed an indenture as he suspected ,on closer look he has discovered Arachnoid Webbing. It's a tiny cyst between two vertebra t7 as far as I can Google. But going back to the cervical part I've hot what appears to be no discs between some of the spine at the top and what look to me like statutes and stakagmites growing in their place . I had to Google that also to see what it is I'm at my daughter's so I don't have the details from the letter with me I'm I a lot of pain which is more bothersome than the tremors My fingers are in agony particularly on my left hand , stiff neck and shoulder and on the same floppy arm side of body. My meds have to be changed and increased and I have waited a month by the time my go sees me on 4th April! I wonder if there are patches I can gave as well as my tramadol and things as I'm scared to come off them ! Have you any news? X
I've not heard of this before but I don't see my consultant until Thursday. I have written a list of all the things I have noticed in myself ready to ask on Thursday. I hope things improve for you before too long and I'll let you know what they say to me. I am still not on any medication as my lady only seems to be pushing Botox and the other nurologist says this has limited use and I should consider beta blockers - but aren't these for high blood pressure.
P.S. I sing all ready in a choir, at worse ive noticed pins and needles and numbness in my upper lip on one side. Like after a dental and the aneatsthetic wearing off tip of my nose too. Pins and needkes not at same time. And this only happens when singing x
But my diagnosis is CD. I have Botox every 3 months or so which helps.
However last injection wasn't successful and then there was a mix up over my next appointment meaning I've been about 4 months without Botox. What I've noticed is that I have a painful shoulder on my left and stiff and painfu neck muscles often going down to mid back. So I'd suggest your diagnosis is quite likely to be right and the tremor is optional 😂
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Dopa-Responsive Dystonia
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