Question about onset
I know dystonia differes from patient to patient. But my question is, does it typically have fairly quick onset or does it vary so much from patient to patient that this question cannot be answered? The neuromuscular specialist I am seeing now seemed to feel that whatever is going on with me isn't much to worry about because the onset has been very slow --- symptoms first appeared approx 17 yrs ago and have progressed since then. She said I have neuropathy in my ankles, and that is what is causing the terrible spasms in my calves, feet & toes. She had no answer for why I also have spasms in my abdomen, hands, and occasionally neck & jaw. I am on Klonopin 1mg which has made very little difference, if any. I didn't mean to get off track - can anyone answer my initial questions?
Thanks,
~Connie~
Thanks,
~Connie~
Replies to This Discussion
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Permalink Reply by BDrake on -
My onset was pretty quick, I think. I'm talking 2-3 months tops and just kept progressing. I've had it now for 3yrs and feel its leveled off I guess. It affects my neck/arms primarily then my legs/feet and occasionally my face/jaw and last but not least my torso.
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Permalink Reply by ramona on -
Connie,
I sure hope you find some answers soon. My own onset was also fairy quick (over a period of a few months), although it is supposedly quite unusual for an adult to develop generalized dystonia like that. It is difficult to know if the dystonia is continuing to progress or if my brain is just overcoming medication and neurostimulation at this point.
Hang in there, friend! I am sorry to hear that the Klonopin isn't helping. Can you go back before your next scheduled appt?
Blessings
Ramona
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Permalink Reply by Imove on -
Hi Ramona,
So good to hear from you. I go back in early August. You know, I don't doubt the neuropathy diagnosis, but it disturbs me that she didn't reconsider her diagnosis in view of the spasms in these other areas. I will have a frank discussion with her at my next appt.
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Permalink Reply by lissamel on -
My head doc looks at me at each visit and ask what I have for him, for I always come in with a paper typed about any new questions I might have along with a timeline of any new systems no matter if I think it is linked to Dystonia or not.
We believe I have had mine for awhile due to the timeline \ history I typed out for him but in Dec '08 \ Jan '09 it seems to have begun spreading and increasing in strength. By glancing through post on here and Face Book I see a pattern of both, general onset over time and smack dab in your face onset.
Your doctor should take into consideration the other spams \ pain you are going through and perhaps writing it down for her to read can help. If not I suggest looking elsewhere for a second opinion.
Mellissa ~
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Permalink Reply by Jenn on
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Mine was a slow progression also. It took 14 years to get a point of disability, and since that point has been increasing more rapidly the past 2 years (In my late 20's) I believe my doctor also believes that because it was slow at first that I have little to worry about.. But the suddenness of the last two years has me worried.. Plus I am still quite young.. and there are many years for this to progress :(
My doctor also has no answer for the tightness in my neck, throat and jaw or the spasms in my abdomen... Because those symptoms all developed in the past two years.. (I think she thinks it is secondary to my my hand, foot and lower back dystonia of 15+ years and wants to treat that first and cross fingers on the others.)
I also occasionaly take klonopin but am on a baby dose of .25mg/day at night ONLY because of the side effects I have with it. Helps me sleep though :P
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Permalink Reply by Nancy Muller on -
Hi Connie,
My onset, meaning full blown cervical dystonia was quick but it was actually slow coming on. For many years I had a slight what the doctors called " a slight congenital head tilt" for many years. Although I never had any pain and myself, I was not really aware of the tilt until it was mentioned to me by friends or the doctors, but I had no pain or other symptoms, so I just didn't worry about it. I had had some very extensive inner ear surgery and about 6 weeks later I exibited full blown CD. But it was sudden one day I was fine the next My head was pulling down and I had pain. I was most likely predestined to have full blown so it was there but not reared it's ugly head yet. Whether the surgery or positon my head was in at the time of surgery was the cause to bring it on completely I don't know. Every case is different. Possibly the surgery and my age was a factor. I was 41 at the time, which is pretty much the norm for adult onset. I also have had neuropathy of my legs for years, mainly going from temperature changes, hot to cold and vice versa. dystonia just sort of does whatever it wants and the main thing is to have a positve attitude that it's not terminal nor degenrative. Treating the symptoms so you have quality in your life and tht postive attitude is the key. You can do whatever you want to do and you have to not dwell on the cause or reasons behind it, this is the hand your dealt now you have to learn to deal with it in the best manner you can. I also take 1 mg of Klonopin and seem to do okay on it. I am always thankful if this is what I've been given to have to live with, it's a lot better than the alternatives, so go forward, keep up on your symptoms if they change and continue to be treated, but most of all be postive. I kind of went on to a more detailed answer than what you were looking for, but quick onset, slow onset, it just depends on the disorder and your body, I don't think there is one answer.
Nancy
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