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freida may
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- devine,texas
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freida may's Discussions
Dr just told me i had Parkinsons
17 Replies
Started this discussion. Last reply by Jenn Apr 21.
Dystonia Storms
3 Replies
Started this discussion. Last reply by Robin Wood Feb 5.
WE ARE ALL ALIKE JUST DIFFERENT
Latest Activity
Not sure where they are hiding- there are several in my area of southern California, although they are not as common and other pain management type. They actually know something about Dystonia. The one I go to most often using a phenol blend to tr...
Hi Rosemary - How did the physiatrist come and reach the conclusion iof dystonia for you ?
beka
Well, sometimes they get it right, it just takes a while. I had it for decades before they even got to any form of Dystonia- earlier diagnosis ranged from MS to discogenic pain. I was with a Physiatrist with 3 years when he finally decided it was ...
Multiple items is so very true. Three Neuros did the exact same tests.. (2 movement spec. 1 neuro w//dystonia exp.) And I got 3 different diagnosis.
Test all they want.. but the correct diagnosis mostly depends on experience, knowledge and how mu...
Not necessarily- Diagnosis of DYSTONIA depends on the clinician's experince, knowledge, patient symptoms, drug history etc... Multiple items. ONE SINGLE TEST DOES NOT tell any clinician for certain if dystonia is dystonia...
Diagnosis is based on...
Hi Monica,
The Burke-Fan-Marsden Rating Scale is not a test so much as a rating scale to help the clinician in his/her diagnosis...it's basically a checklist of symptoms, location, duration, severity, etc. It was developed to help the clinician m...
well actually there is scale doctors use for dystonia. it's called the burke-fahn-marsden rating scale, but i'm sure it is not advanced enough to be inclusive of all dystonias. doctors probably wouldn't be inclined to use it unless they had a real...
the cold makes my daughter much worse she was diagnosed last year and will be hibernating this year!
Profile Information
- Location
- 78016
- More about me (my health interests and reasons for joining WEGO Health)
- just DX with DYSTONIA from the Mayo Clinic.
Married 17 yrs, 2 children, i grandson
I love chihuahuas and have4 and one chiweenie
I love outside
When Life Gives You Lemons, Make Lemonade
Freida may's Blog
Day To Day
I was never the one to just let things go and never worry, i am a constant worrier. About 4 years ago as i was getting ready for work i was putting on my eye brow liner with my right hand and it would not sit still. I let it go for a a few days thinking it would go away but it di not. I mentioned it to my husband and he said well you know we are all getting older, not me i thought there was more to it. The next time i went to the RHEAMATOLOGIST she looked at the twitch in the last two fingers an… Continue
Posted on June 14, 2009 at 11:21am —
Comment Wall (3 comments)
- At 6:01am on September 11, 2009,
anastasia said…
- Frieda I would love to be your friend thank you so much,we can help one another:)Please tell me about your dystonia and experinecnes and docs,no one here ever heard of it.Feel so alone.
- At 1:23pm on February 10, 2009,
karen said… - freida..
your letter brought back so many memories..memories of going thru exactly what you are going thru now..i'm so glad that you wrote to me..what you are going thru right now is very scary..it's only normal that you are having a hard time excepting what they have told you..we all go thru when we so many feelings when we are first diagnosised..denial is a big one..how can this be happening to you..then you go thru a grieving period for the life that you had and all that you have had to give up..and for the life that you thought you were going to have..then comes anger..along with trying to deal with the pain..it's no wonder you want to scream at the world!!
it took me quite awhile before my anger began to go away..don't get me wrong
i still have my bad days..days when the pain is so bad and my body parts don't work so that i can do what i want..but i realized with the kind of disorder that we have..the kind of life that we now have to live it's ok to get upset every once in a while..you wouldn't be human if you didn't..BUT for your own sake you have to find a way to control the feelings of anger..life is too short to live like that forever..it took me a while to decide that i would rather live the life that God had given me and get the most out of it rather than sit in my chair and be mad and hate everything and everyone..it's not an easy thing to do..i work at it every single day..but i have found that to start the day with a positive attitude makes it so much easier to keep the anger from taking over..humor is also a great thing to use to chase away the feelings of anger..
learning what kind of dystonia that you have is more of an elimination of what you don't have since there isn't any one test that they can run to get that diagnosis..and once that you do get the diagnosis trying to determine what kind depends on what part of your body are effected..dystonia can stay in just one area or it can be in two or even more..some people's never moves from where it started..and some's will move..
my diagnosis of torsion dystonia..even though i didn't start having symptoms until i was 22 is because it didn't just start in one place..i had symptoms in all of my muscles on both sides of my body..from my head to my toes..at the same time..
i can't tell you where your dystonia is going to lead you..no one really knows
dystonia effects everyone differently..even those who have the same kind..the nerve conduction test and emg will help you get some more answers from the results..i hope that they went well and i hope that you and your doctor can come up with a treatment plan that will work best for you and one that will help keep your pain managable..one of the most important things that you can do for your care is to establish a good relationship with your doctor..make sure you have a muscle disorder specialist..they are the best at treating dystonia..talk with him..don't be afraid to ask questions..take a list of them in with you so you won't forget..something that can be very easy to do..and if for some reason your not happy with your doctor keep looking for one that you do like and can work with..it will make such a big difference in how you feel and do..take charge of your own care..be forward if you have to..no one is going to stand up for you better than yourself!!
one important thing to remember frieda is that you are definitely NOT alone..
EVER!!
take care!! karen
- At 7:30am on December 25, 2008,
BDrake said… - Thank you! Merry Christmas wishes to you and yours as well. May your 2009 be so much better than 2008!
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