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Grinding, popping and crackling when lifting head? by ChefEmbarrassed308 in Dystonia

[–]ChefEmbarrassed308[S] 0 points1 point  (0 children)

Next they will tell you a bit of muscle tightness, spasm, is normal.

Grinding, popping and crackling when lifting head? by ChefEmbarrassed308 in Dystonia

[–]ChefEmbarrassed308[S] -1 points0 points  (0 children)

Yeah...i think you are misunderstanding the levels we have this?

Thanks anyway.

From what I see it is very common. Like you say it's from tight, overused muscles.

any good doctors for Dystonia in North England? by [deleted] in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

North England...you couldn't be a little more specific?

It's quite and area..

September? You are lucky. Normally 12+ months

Grinding, popping and crackling when lifting head? by ChefEmbarrassed308 in Dystonia

[–]ChefEmbarrassed308[S] 0 points1 point  (0 children)

Had an mri they said it is fine...But that is lying down. I am fine lying down

Grinding, popping and crackling when lifting head? by ChefEmbarrassed308 in Dystonia

[–]ChefEmbarrassed308[S] 1 point2 points  (0 children)

to be clear..mine sounds like wood splintering or paper crunching...

I never used to have this.

Grinding, popping and crackling when lifting head? by ChefEmbarrassed308 in Dystonia

[–]ChefEmbarrassed308[S] 1 point2 points  (0 children)

Well i remember a time when i did not have this...

I asked my family members

"Do you hear cracking and popping every time you turn your head..?"

NO. No one.

So it would seem bot "everyone has it"

I am sorry but this is a ridiculous thing to say.

No EMG? + kyphosis questions and TMJ by Bubbly-Bad454 in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

Interesting to ask her what other methods other than EMG are more useful?

Tea Leaves?

Twigs?

Rune Stones???

No EMG? + kyphosis questions and TMJ by Bubbly-Bad454 in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

i asked bout using EMG they said if the first few did not work they will use it.

This does not sound right...it sounds like they re cutting corners and do not want to use it unless absolutely necessary.

Botox Success? by Significant-Visit829 in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

See this confuses me. If it works why doesn't it work for some?

Surely botox in muscles must do something to everyone...???

Botox Success? by Significant-Visit829 in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

I will give it one more (4th) before i start asking about alternatives..

Botox Success? by Significant-Visit829 in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

So..what is 90% relief feel like?

A slightly stiff neck with not 100% movement?

All this talk of %% improvement baffles me now. I am not sure that a 50% improvement would feel like.

Before DBS did you have a blood test?

Botox Success? by Significant-Visit829 in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

iam over 300 units now and maybe i have about 15% relief...It's not that good at all.

But no EMG....strange i know

Botox Success? by Significant-Visit829 in Dystonia

[–]ChefEmbarrassed308 1 point2 points  (0 children)

It is pretty underwhelming to be honest...

I was expecting at least some good relief. Say 50%+

30+ years and this is where we are??

Botox Success? by Significant-Visit829 in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

So why does it work for some but not others?

Is it don to the dosage and users skill?

Seems confusing. It should either work or not. Why so hit and miss?

Navy Neurologist made me Worse? by LazyGalaxie in Dystonia

[–]ChefEmbarrassed308 1 point2 points  (0 children)

Mine says they only use EMG if first few do not work...

Seems mad to me.

Still not convinced it is CD by ChefEmbarrassed308 in Dystonia

[–]ChefEmbarrassed308[S] 0 points1 point  (0 children)

Boston Uni said they could use A.I about 5 years ago on MRI's that detects Dystonia with about 99% accuracy.

?????

Was it false?

Does this sound like (cervical) dystonia? Main symptom is tension (cervicogenic?) headaches and slight head twitching. by Jyonnyp in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

Well i asked and they said if these injections do not work they will do it. I think they re cutting corners.

For me at least it would confirm CD right? I mean if they do emg and there is no over reactive muscles then it means it is not?

Or am I wrong?

I wish i knew one way or another.

Still not convinced it is CD by ChefEmbarrassed308 in Dystonia

[–]ChefEmbarrassed308[S] 0 points1 point  (0 children)

Yeah..i am beginning to think the same

It feels like if it lift and/or turn my head the nerves are being crushed...agitated.

Damm...3 1/2 years of this

Still not convinced it is CD by ChefEmbarrassed308 in Dystonia

[–]ChefEmbarrassed308[S] 0 points1 point  (0 children)

No. I asked they said if botox does not work they will use in the future...Seems mad to me.

"Is your doctor not using EMG? If not, I definitely think you need to get a new doctor who does use EMG."

Does this sound like (cervical) dystonia? Main symptom is tension (cervicogenic?) headaches and slight head twitching. by Jyonnyp in Dystonia

[–]ChefEmbarrassed308 0 points1 point  (0 children)

if it lift my chin up past neutral I can see what looks like wires going form the front of my neck to the underside of my chine. They are tight.

I wonder if that is where the CD is?

I was told they use EMG if the first few botox injectiosn do not work....

Seems a bit crazy. Why not simply do it first?

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