FIC,
I also stagger and stutter. I sometimes to misjudge doorways, thus hitting my head on the doors and such. I havent had difficulty swallowing though. Writing is never an easy task. Sometimes its the action, other times I cant get the words out. MS was never part of the equation with me, and I dont know much about it. The docs do go by the history of symptoms, but I always thought for MS, the tests have to be postive, if not they move on. Dystonia manifests itself in soo many different ways. Everyone is different, and it can look like MS parkinsons, the ataxias et al. No wonder there arent many movement disorder specialists our there.I was originally diagnosed with myoclonus, because some of my movements were rythmic. Later it was Secondary Torsion dystonia; Same Doc. My new neuro says its the Dyskenisias. I have this dx for two years now. Sorry for the long post. Take Care. Paroksysmal Dyskenesias patients, the real movers and shakers.

ANDROMEDA - I've been told this can't be EPILEPSY as I don't lose conciousness. I've read where there are types that don't.

I jerk slowly at first, say it will start in a finger or my hand and then it progress to the entire body, when severe. Sometimes it just hands, or just head.

IS THERE HOPE?? WILL IT PROGRESS LIKE FIBROMYALGIA

FIC,
There is ALWAYS hope. Dont give up--ever! The mucky-mucks at NIH and other hospitals world wide are constantly doing research. No it probably wont progress, though you may have bad days when the symptoms are very severe. Its not an easy thing to live with. I know. Take things day by day. Definately avoid bright, and flashing lights. Keep all stimuli, weather tactile, like extreme heat, and cold, loud noises. It will make a difference. Our brains cant handle it. This is true for most types of Dystonia.

ANDROMEDA - Since there are no tests to prove what in the world you have, how do they determine squat? I mean I've had several MRI's and now a lesion in the right occipital has been found and a begnin hemigenoma on my T11.
My main Dr that has seen the progession over the years swears MS even tho tests say no he stated it can be dxd by history, which I been jerking since 2003, losing the ability to speak because the stuttering becomes so badly and then the rest of my body figures it's CONCERT time and I really shake top to toe. If I could time the thing, I could make a fortune as a side show. lol

I just keep thinking epilepsy because the last few episodes last 1 1/2 hours and then just POOF goes away leaving me exhaughested.

Hi FIC,
Docs dx movement disorders by symptoms, current and past, and sometimes what meds you respond to. Dopa responsive dystonia will respond to Sinemet. They also move every part of your body to see what does what and when. My initial appointment with my neuro took about 2 hours, plus I was given a 10 page questionaire to fill out ahead of time. When it was all said and done. He came up with PD. In regards to epilepsy. Siezures dont last for 1 1/2 hours, PD can. I've had times where my attacks lasted for 4+ hours. Talk about tired.

ANDROMEDA, YOU HAVE BEEN A TRUE GOD-SEND! I know medical wise the lesion on the right occipital is where the gait, balance, etc. gives the body messages. However, it is the left occipital that does the vision, speech, etc. I am just concerned that since the MRI I may have developed a lesion on the left occipital as well. However, no use crying over spilt milk.

Do you have anything that assists you with the episodes & their frequency. Like deep breathing or imagery meditation? Thanks again. Since speaking with you I don't feel like I'm losing my mind.

Well, I'm in a bit of the brink here. I usually am extremely up beat and positive so I don't understand WHAT I am feeling or WHY?



I just want to sit down and bawl, really it's due to everything and nothing. I'm frustrated by my conditions which God knows shouldn't even make me blink by this point in my life. However, I suppose it is the FACT that I am losing more of me each day.



This continual jerking makes putting on earrings & necklace a major test of my will. I refuse to give up what is important. Oh, I know it's not really the jewelry it's the jerking that is still me, who I am, etc.



There's supposedly, if you believe TV commercials, a woman shown jerking like me and the Dr has put some device in her that he activates with a magnet in the chest area and her jerks are 98.5 percent improved. Right now I'd let them split my skull open and stick whatever wherever to be "normal".
Dear God, is it not enough to have a messed up neck/upper back/fibromyalgia and now this freak disorder that is GENETIC called fusogenic paroxymal diskonsia?

I can't bear the thought that one day I will no longer be able to care for me let alone my husband & children. I've told hubby the day I get that way, to put me in a nice facility, pretend I've died and to go on with his life. I want him and the kids happy not some wacked out medical case for them to look at or deal with.

I will apologize up front I quit the anti-depressant as I believe it was making the jerking worse & more significant as there are only so many neurons receptors in the brain for dopamine and evidently I had too much and overload the transmitters in the brain. LOL My doctor says I should go to med school as I keep him on his toes.

I apologize for this down babbling, but I can't really unload on hubby, I want to spare him that so I always put on a smile or laff for he & the kids.

The only good thing I can say is this....there's a contemporary Christian song that I believe is titled "I WILL PRAISE YOU IN THE STORM". If any good can come from this, I only hope it brings glory to God. And if that does bring Him glory, then the storm is worth it.

Catholics believe you can offer up your suffering for others......that being the case, I offer mine up to the hard hearts that need Him, those who suffer more than I, and I offer it up to God as He helps me bear it hour by hour.

Hugs to all, and remember, we all got a purpose, and whether you realize it or not, someone else is somewhere needing you. Even if you are just held together with old bubble gum and frayed twine.

Wise words FIC. Its Ok to talk it out. That is what the forums are for. To get back to some of your questions. I have found that deep breathing, helps somewhat. I have also found that the mind over matter does not work. As a matter of fact, it only makes it worse. The antidepressents also may be a contributing factor. I know about the surgery you mentioned in the TV commercials. It is Deep Brain Stimulation Surgery.AKA DBS. Its like a pacemaker for the brain Its very effective for Parkinsons, and early onset DYT1 positive dystonia. For all other types the results have been less than promising. Here are some other suggestions. First. Take things day by day. You know the song " this is the day, this is the day that the Lord has made, that the Lord has made. We will rejoice, we will rejoice and be glad in it..Remember the words in first Peter, about the trial of your faith being more precious than silver. Your going to make FIC. You are going to pull through.

Thanks, ANDROMEDA. I finally settled on the fact that it is the pill regimine causing the worsening, it's just the PD. The falls are most hurtful as well as embaressing. Twice in the church parking lot this AM. I think tho should someone ask in that situation, my reply would be "I'm fine. Just a final prayer before I drive home." LOL

Has PD affect your life greatly? If that is too personal,I apologice and you needn't answer. Have you found inovative ways to cope.

I suppose I'm really bummed as it took both my son to button my outfit because I couldn't hold the button and the jerking was intense. I finally also gave in to have hubby pin my broach. It really bums me and I think, "Dear God, is this what my life is going to be like? Other people have to dress me, etc.?"

Good Morning FIC,

First, the medications to treat other neuroogical disorders may help. Most with Dystonia WILL get some relief. I have been responding to the anti-convulsants. I know a person who is responding to Dilatin. Try different ones to see what works. As far as lifestyle. No I dont mind answering, though I appreciate your sensitivity. Movies, concerts are out. Night driving is limited. House cleaning-limited, and I need to do it in the morning before my nervous system wakes up. I loose everything-the short term memory loss thing. Oh the shoes, have to be slip on or velcro, because I have trouble tying laces. No slip ons, I have some "landings" with those. Cooking, again I have to be careful because of the spasms My scars from the stitches are my reminder.
Coping, well I've learned to laugh about it. Ok true story. When I first got sick I started looking at the support groups. There was a comedy one, and I started chiming in. Discovered that I was good at it. Comedy writing has been my release. I get my neuro laughing when I'm in his office. The moral of the story is. There may be a hidden gift in you which is waiting to come out. May be its poetry, song writing, who knows? I've also stopped fighting it and have tried to see it as an assett versus a liabilty. Try to write down what good things have come out of your illness. Take Care FIC, its always good to hear from you.

ANDROMEDA - You are very kind to help someone so lost in the wilderness of this thing. Maybe I will hate it less if I call it Herbie or such? LOL Doubt it.

What I do to try to avoid stress is my placards that are shown in my photos section. Oh, how I love carving & wood burning. What's funny is it terifies my husband to no end. He keeps ranting that I' going to burn the D*** house with my woodburning. If you doubt my antics, read "DREMEL CHOAS". I also do carving. I keep busy making placards for friends etc. I also do face painting parties.

I guess, ANDROMEDA, this will progress as the Fibromyalgia did and then all I will do is set and breathe----a living vegetable.

I am studying to be a Biblical/Ministerial Counselor.

These are the little things I still can do to keep busy but are not too taxing and you & I both know what happens with stress EARTHQUAKE!

It's been such a joy to get to meet you and chat with you. You have been the FIRST PERSON to understand. I've explained till I'm blue and they (Drs., people) nod their head like they get it but it's like trying to explain childbirth....you just gotta go thru it to know.

BIG BIG HUGS and millions of thanks. Do keep in touch.

I need to be compliant with meds. Instead I take them PRN which, is a no-no. My bad.

I also take the meds as a PRN.ooops. I'm like that with all medications. What cool talents, woodworking. Hey FIC this will make 27 replies in this discussion. The medication thread has 30. 4 more replys and we will beat them. Here is our Cheer. Ready? PD, PD, PD. You wont believe till you see. PD, PD, PD I've got it but it aint got me. Team colors, hmmm. I'll get back to that

ANDROMEDA - Thanks so much, you're a hoot! Maybe PD could answered as I jerk of due to PD. Do it with a straight face and when asked PD is, we would smile, roll our eyes, and say PD stands for PERFECTLY DESIGNED. LOL LOL Then it would really make them wonder when we go into jerk mode.

How do you deal with "down" days. You know when you get bummed over something you want to do and can't, etc.?

The woodburning and carving are my favorites and when the jerking starts, I just have to quit. Fortunately, I've had customers for 9 and am working on a 10th which will go to North Carolina. I shipped to Canada, South Carolina, WV (local) and North Carolina.

Look forward to hearing from you soon. Oh, IF YOU LIKE READING READ "THE SHACK". It's great great great.

Perfectly Designed I love it! Its true though. Its is GUCCI of disorders, elaborate, expensive, rare. No dollar store disorders for us. Oh your question, how do I deal with those down days. I keep saying to myself that its only temporary, and that It will pass. Which is hard for me, a type A, and a Myers-Brigg ENTJ- fieldmarshall. I also ( after I resigned myself that I cant do anything, ) I listen to soothing music. instrumental, works for me.

Team colors are: Violet. The V meaning victory, and light blue, cause it goes well with Violet. Hey FIC, do ya think we can get GUCCI t shirts?

ANDROMEDA - Maybe the PD since I also have PND could be on the front of the shirt as stated "PERFECTLY DESIGNED" on the back use "PRETTY NIGHT DISASTER"? Do you know if you also have pnd? I'm so "blessed" as I have BOTH. Now, I am the kinda gal the prefers the entire set (ie: earring, bracelet, necklace, ring) ROFLOL

Not sure why I got both but what can I say, it was on sale? ROFLOL