Cervical dystonia?

[jhop]

Has anyone experienced cervical dystonia symptoms? This is my predominant symptom, unclear still to me if it’s primary or functional. Either way it has caused intense nerve burning in neck. Has anyone tried Botox or other treatments for it?

[eviedotty]

If you have the symptoms...then why are they not diagnosing you with it???...I have dystonia and know how painful and debilitating it is to live with this, I just cant imagine having the symptoms and not getting the diagnosis for how are they treating it...and for the record there are many people who have dystonia that does not show up on any tests but they still have dystonia based on a physical examination and are treated accordingly...do research dystonia primary is one you are born with then there are numerous other labels which are dependent on where the spasms are etc...also you need to know that dystonia can spread so things like any drugs you are prescribed can affect it...also exercise can affect it...what am saying is dystonia on a standalone matter is huge in respect of symptoms etc...here to chat any time...xx do have a go at researching it

[jhop in reply to eviedotty]

Thanks so much I’ve done a lot of research and trying to determine if it’s functional vs primary. Right now neurologist says it’s finctional so can’t get regular treatments like Botox - was yours deemed functional or primary? There’s a natural rehabilitation clinic in New Mexico run by Abigail brown if you look her up they have a long distance program that looks really good

I am in excruciating pain but haven’t gotten a lot of help from traditional pain docs what do you do to manage?

[eviedotty in reply to jhop]

I have a cavernoma in the Basal Ganglia area of the brain and it has bled at some point which appears to be the start of the dystonia but then I was given a drug for anti sickness when I went through chemo and this drug is red flagged for dystonia patients as it will help to spread the dystonia...but now some 20 years down the line am getting the FND diagnosis but am allowed to carry on calling it dystonia was the exact thing that was said to me...

[jhop in reply to eviedotty]

Sorry didn’t see this pop up earlier what have you done that’s most helpful?

[eviedotty in reply to jhop]

truthfully....ignored the FND and carried on coping with dystonia as its a monster to deal with without making it more difficult by adding FND and then expecting me as a non medical person to decipher what belongs to dystonia and what belongs to FND...having said that I did email my complaints to the doctor who gave me the FND diagnosis and pointed out using the procedures that should have been followed that werent...examples...patient medical history....basic blood work tests that didnt happen...explanation of why and which symptoms indicated FND and why are these symptoms FND and not dystonia etc...the outcome was a letter of apology for yes you are right this and that should have been done according to the diagnostic procedures etc and then an excuse that the Doctor Stone has more time and resources available to do a full diagnostic evaluation and then I was invited to ...should I like...send videos etc to her for her to look at to see if there was in fact any evidence that could be looked at as FND...so what I took from this was that a shabby job was done at the clinic and that is evidenced from the poor way that procedures were followed and if I am keen to have an FND diagnosis then she will do her best to see if she can get me one...

[jhop in reply to eviedotty]

Smart.Yes so what have u done for the cervical dystonia symptoms that have worked for y.

[eviedotty in reply to jhop]

My cervical dystonia is only a small part of a more severe generalized dystonia and so as such nothing has really worked...started with clonazapam and that was great for 3 years but then gave me chest wall dystonia with potentially fatal episodes that required being intubated, bagged and sent to HDU and on one time the Arrest team were called and they struggled to get my respiratory muscles going again and so my family were called in to say goodbye got through that ..,.have tried baclofen and it stopped my bladder working and affected my kidneys so that had to be stopped...developed dystonia around the swallow muscles and in short its just too wide spread and did become very dangerous...so I dont really have an answer for you...I have recently being tried out with the American way of doing things and have had a degree of success with that and that would be Diphenhydramine element of antihistamine tablets but this is early days and as such have recently developed what is initially looking like a dystonia scoliosis...so as far as I understand you would probably looking at botox if the dystonia is just in your neck mine is way to far spread for botox to do any good...let me know how you get on ...sorry I couldnt be any more helpful but things get pretty bad for me with dystonia and so no easy answers are available here...