Chicken or Egg?: Opinions welcomed here... - Dystonia Society

Dystonia Society

601 members202 posts

Chicken or Egg?

AllHis profile image
10 Replies

Opinions welcomed here!

So, just diagnosed with Cervical Dystonia & I have a wonderful doctor who began Botox right away. ( well, quickly...these's paper work & insurance...)

It was freeing to be handed a fact sheet about Dystonia & advice to join support groups.

So I've been fight something strange in my right side many years now (10 years? Or more...)

*could Nexium be a toxin to me? And a cause for Dystonia?

*could I have liver damage from a tummeric with black pepper extract suppliment taken with Nexium?

* can cervical Dystonia explain:

Sudden loss of hearing in one ear?

Pulsitile tinnitus?

Carotid artery narrowing?

Random sharp, tearing feeling under right ribs?

Tightness in hands & feet when waking in the middle of the night?

A stumbling kind of walk?

And my left jaw is displaced. TMD?

Written by
AllHis profile image
AllHis
To view profiles and participate in discussions please or .
Read more about...
10 Replies

Glad to hear u got diagnosed n u have some good literature to help answer any questions.Having a very hard day myself but always here if u need a ear to listen. :)

AllHis profile image
AllHis in reply to

Any input would be helpful. It looks to me like dystonia may be more of a symptom than a disease.

Do you know of carotid artery involvement with dystonia? Or any connection?

BlanketTime1 profile image
BlanketTime1

i'm not sure about all of it though I will say I've recently started having the sharp stab in my right ribs. cervical dystonia mostly affects my left side with my neck and head trying to go right. perhaps it's a muscular reaction? *shrugs I also experience tinnitus in my right ear with this random feeling of the hearing almost going out and coming in again with the high pitch. since the muscles on the left side are under strain I also feel numbness and pain down my left arm. exercises help some. it's good you are getting treatment right away and it sounds like your doctor is informed.

I hope you keep finding answers. stay strong.

AllHis profile image
AllHis in reply to BlanketTime1

Thanks for commenting. It's been a long road. I was a seamstress for 26 years. My right shoulder would not "heal" & I stopped sewing 2014.

Every physician told me it was muscular. Or fascia...

Fibromyalgia. Anxiety disorder. Irritable bowel syndrome.

So now I keep trying to lump all my symptoms together...

Maybe I should stop...

Now that I can view this from the Dystonia perspective, well...how much can I blame on Dystonia?

*it's interesting to note most of the beauticians with Dystonia reach a point they simply can't work any more.

*parkinson's patients can describe my hearing loss to the tee. Put me in a crowded room, I hear nothing! (Doctors were guessing a virus to explain my loss of hearing/ one ear. I just read how it is dopamine that protects the cochlea.)

*so everything is starting to add up but the pain in my right side just under the ribs. Dystonia too? Or do I need to ask for more testing?

BlanketTime1 profile image
BlanketTime1 in reply to AllHis

i'm not sure. it's challenging with multiple diagnoses. for instance, I have dystonia, ataxia, nerve damage, and spinal issues. so why the sudden stabbing pain in my ribs? i'm not sure. sometimes it's like shutting one's eyes and picking which box to tick. I've seen quite a few doctors who didn't know what to do and therefore told me it was in my head... this was with positive test results! the rheumatologist I saw explained it to me finally by saying my diagnosis was complicated by multiple body system involvement. i'd never considered that before; it opened my eyes. I would not give up. if you feel you've found a team that will listen and investigate, i'd push to get your answers.

AllHis profile image
AllHis in reply to BlanketTime1

So some time has passed. It looks like I have to go to PT for my jaw/TMJ *sigh*

HAPPY NEW YEAR!

I just wanted to reach out and see how you're doing.

BlanketTime1 profile image
BlanketTime1 in reply to AllHis

i'm mentally preparing myself for a hip replacement and trying not to whine too much about how i'm way too young for this :-) otherwise, a new medication helped with dystonia and i'm still learning about my other ailments. happy new year to you too!

rtn3421 profile image
rtn3421

As I understand it, cervical dystonia is caused by the spatial awareness part of your brain becoming hyperactive. The brain then sends signals to your neck muscles causing involuntary muscle movements, the botox aims to block these signals in the muscles it is injected in. The other symptoms you describe maybe the result of other forms of dystonia, if you haven't already, you should see a neurologist that specializes in movement disorders.

One other thing, botox injections can have side effects, your doctor should have provided a complete list. If any of your other symptoms occurred after you started your botox treatment then it may be the botox that's the the cause of the problem.

AllHis profile image
AllHis

Thank you.

I just received a test result on my carotid arteries. THIS IS CRAZY!! There is narrowing caused my muscle tissue overgrowth in the vessel lining.

WHAT?!

I keep looking at the word "narrowing," and would like to avoid a stroke. I'm trying to schedule an appointment with my primary BEFORE Thanksgiving...

I kept looking for a diagnosis. I got it. Well, now it looks like the "diagnosis," may be but a symptom of something bigger, or more of a whole body thing.

Grvarley profile image
Grvarley

Did you develope dystonia after a medication change. Please read my post.

You may also like...

Finding the best specialist for dystonia

neurologist/specialist for a second opinion on my ‘Cervical Dystonia’ . Any advice out there as to...

Help with Cervical Dystonia please

Hi, I was recently diagnosed with Cervical Dystonia after being unsuccessfully treated for a head...

Trial for dopamine- responsive Dystonia?

specializing in headaches. She diagnosed me cervical Dystonia. (This is following many years of...

Life has become unbearable

Please help me. The cervical dystonia pain in my neck is becoming truly unbearable. I refuse to keep

Dopa-Responsive Dystonia

to have Dystonia and the fatigue that comes with it. As I don't know anyone else with Dystonia and...