RE: Re: Dystonia Katrina

[Guest guest]

Hi Katrina

 

Thank you so much for your info. I have read info and am sure I have dystonia

down one side. I have never been able to do the relaxation exercises for cfs as

my body twist and is so uncomfortable to lie still, but the neck and face thing

is the worst now and have started to make strange expressions with my mouth.

This has always been their since being ill but has got so much worse in the last

18 months and my head is puling to the left. I know it will be soo difficult to

get a diagnosis. I am in the uk and just the cfs/fm diagnosis is a problem so to

now say i want to be seen for something else will be a nightmare. I once had

botox shots in my shoulders for frozen shoulder and it helped so much with

symptoms, now I realise why. I am going to try anyway as I have read that is

they target the shots it can help the face an maybe I could talk/eat without

such pain.

 

n

@...: kattemayo@...: Thu, 5 Jan

2006 08:50:02 +0000Subject: Re: DystoniaHi n,Yes, it is

possible to have Dystonia, CFS, and FM, because I do. I have met a very small

handful of others who do.Dystonia is contracting of opposing muscles, and can

occur in one or many places in body.Most literature connects Dystonia with the

Basal Ganglia. (Interesting since some CFS/GWS research has shown damage to the

Basal Ganglia)It sometimes, but not always accompanies Essential Tremor (yes, in

my case).Suspects for Etiology? I have read for  Dystonia

are:GeneticViralToxinPost accident/injuryDrugInfectionMitochondria and other

diseases. For instance,  's disease causes " Dystonic " muscle spasmIt is

not improper breathing or stiff neck, tho it can cause either. It is different

from simply " spasm " . The brain is telling muscles to move, opposite of what you

want them to, causing various postural changes and pain. (yes, it can hit the

face, too).It has different names, based on the area affected. Many with it go

through similar hell of misdiagnosis that ME/CFIDS/CFS persons do, including

psych BS.You are supposed to get evaluated by not just a Neurologist, but one

specializing in " Movement Disorders " .I was lucky initially to get DX from Local

Neuro, confirmed by a MDisorder Specialist. But since then, some hellacious

experiences with even " Specialists " . I strongly suspected that my " CFS " DX added

to this.Tho cranial sacral and Osteopath can relieve me somewhat, they do not

fix it. Chiropractic is not recommended, especially with " cracking " , at least

until you learn more, or see one with major experience with Dystonia.THere is a

group for Dystonia, and a very experienced " Bulletin Board " of patients.

Like us, they range from mild to extensively, severely afflicted, and they are

very helpful.It's not easy to hear about it, but I think that is the best place

to go for a recommendation for next step...which Specialist, etc.My

opinion:Then, there might be something as close as possible w/your SX to print

out, and ask your DR. (does he have to authorize?)to send you to " evaluate for "

or " rule out " Dystonia. Rather than " tell him " you have it.Dr. Cheney found the

Lactate spikes in my brain on an MRS, including by the Basal Ganglia, and

thought this may contribute to my Dystonia.I also seem to have every other risk

factor listed above too. My grandfather had tremor and what I think was Dystonia

in eyelids.I also took Prozac in the 90s, another suspect.I hope to God you do

not have Dystonia. It would be great to have it ruled out. But if you have it,

getting a Diagnosis and learning about isA #1 important.(For coping/treatment

info, and also because certain medications that are for CFS can escalate it.)I

do think and hope the Science is advancing in this area.I hope this help> >>This

list is intended for patients to share personal experiences with each other, not

to give medical advice.  If you are interested in any treatment discussed here,

please consult your doctor.