Hi FIC,
I have Paroxsymal Dyskenisia, both the movement induced and non movement induced type. It is like Dystonia, in that the origin is in the basal ganglia, sometimes it is refered to as epilepsy of basal ganglia. Yes, unfortunatley the symptoms will get worse with stress and bad weather. Your doctor is sharp. This is a rare disorder,which is also rarely diagnosed. What medications are you on? A excellent resource is the Dystonia medical research foundation. They have info on the disorder and a PD network. Best of luck to you. I know what you are going through, and I know its not fun.

ANDROMEDA - I've notice stress & weather send me into blender mode. Friday was sooooo bad I had to go the local clinic to get a shot for it. I was shaking so badly I was unable to speak without stuttering and my teeth clicking.

Dr. suggest REBIF and I freaked as I know that is an MS med and my main dr swears I have MS based on my history. Spinal/MRI both "ok" But now they have found a spot in the right ocipital which I know effects balance and gait.

HOW DO I DEAL WITH THIS NIGHTMARE on top of Fibromyalgia?

MS medications are not an uncommon treatment. If it doesnt work, he may try anticonvulsants, like Keppra, Tegretol, trileptal the stuff they use to treat epilepsy. They usually have a positive effect on the disorder I've had luck with Keppra and Tegretol. I'm on a new titration schedule with the tegretol, getting me up to thereapeutic dosage, without too many side effects. As far as meds are concerned its trial and error, but you should find some relief. Also the abnormal gait could be the PD also. Sometimes I can barely walk. How to deal with the nightmare, and indeed it is. First know your triggers. People with PD,and dystonia have sensory triggers, like light or sound, or as you noticed, temperature changes. Avoid Caffeine and get plenty of rest. Pay close attention to your body. When an attack is just beginning, you'll notice something slightly different the way your body feels. ( this takes practice) and when it does sit and stop. Movement only makes things worse. Also dim the lights and any sound.
I had a horrific week last week. An attack started when I was driving, and with my right arm which is different. It went full blown when I got home. Both arms swingingly wildly. I dont know how I got to sleep. Should have gone to the ER and got a shot like you. Sorry for the long post. Tons of blessings heading your way.

ANDROMEDA - I also have CFS and caffien is the only thing which keeps me staggering about.

I was just thinking, if I'm ever pulled over for a sobriety test, it would be hilarious as I could walk a straight line without falling. ROFLOL Just think of how confused the poor cop would be "OK, no booze, Hmmmm, no drugs, What's this lady's problem?" I'm sorry but I find that hysterical to think about

ANDROMEDA - Do you know why this occurs? It just bowled me over. I messed up my upper back & neck. FURHTER IS THIS CONDITION PROGRESSIVE. I keep falling down and walking into walls, etc. I feel like a pinball machine. I also notice the movements become more animated where as before I just jerked/twitched.

Sorry for the late reply. I was out of town and without a computer. No one is too sure about the whys of PD. Most of the research that is being done is centering around focal dystonia. The reason being that they know where the origin is. As far as i know its not progressive, but you may see your symptoms change, I have. Burning my fingers is one of my things. I dont feel the heat quite as fast as I used to without the disorder. Also my speech and writing get scrambled sometimes. In regards to the speech I hear it. When I was in my neuro office the other day. i was talking, but the words were not comming out correctly. He said he understood me, but how frustrating. Now that also would be funny. I just picture it now, staggering walk and speech. I hope you had a wonderful holiday.

ANDROMEDA - I've noticed my symptoms worsening like when I type and I've notice difficulty speaking (stutter awful) and have difficulty swallowing. I choke very easily. Now these symptoms come & go. They can last for hours, weeks, days. Once my right ear was deaf and I only had 1/2 hearing in my left ear. However it left after about a month.

I feel like a walking circus as I never know which "ride" I will get.

This also allows me to walk full force into walls, door jams, fall down stairs, ect.

Mostly all that has been done for me is medicine for muscles to keep them loose but I've just also been added to Cogentin (Parkinson Disease to help with the muscles. I feel as if I am going to jump out of my skin.

SUGGESTIONS???

Hello again,
Just thought of something. Are you seeing a movement disorder specialist? If not I strongly recommend it. As far a suggestions are concerned Slow is the word. I liken PD to a traffic jam. You have four lanes of fast moving traffic, that merge into two, and viola they are stuck, and viola an attack. Try to keep your movements slow diliberate, and simple. and dont try to do too many things. Tall order I know. Its not a guarantee. My last attack in the car came out of nowhere. The meds are going to be trial and error. One person I know is doing well with dilatin. I respond to the anticonvulsants. Typing is a pain, and I have had my right arm give out. I hope this helps. Keep posting. Great to hear from you.

Honey, I drive 1 1/2 hours just to get to my neuro. We live so far back in West Viriniga that they pipeline in the sunshine.

IS THIS PROGRESSIVE OR DOES IT JUST COME IN FLARES?

The reason I ask is I've been studying on the right ocipatal portion of the brain which tells me my movement and gain and balance and vision are affectd. I've seen lovely rainbows, etc. usually in one eye but have had both as well.

Where can I find some really good research that is factual? Will it go away just like it began...all of a sudden?

Thank you do much for your time and curtesy. I lost in a jungle of test, meds, drs. etc. and all say different things.

Well the good news is that it is not progressive, and it will come in flares. The literature call it "attacks". How apropo. Will it go away as quickly as it started? Thats doubtful. You may have a good week or two, and then when you think its in remission, it flares up. There is very little known about the disorder. Two reliable places to start is the Dystonia Medical Research Foundation. They will send you a pamphlet on the Dyskinesias. Wemove.org is also pretty reliable. the research is limited, there is alot about the disorder which the doctors dont know. Also there are very few of us with this. and as you have experienced all too well,the symptoms are unpredictable. I wish I could have given you better news. I have this for 10 years now, and no sign of going away. Take Care, all the best to you.

ANDROMEDA - Fibro is PROGRESSIVE even tho neuro's say it isn't. Believe me....it was just the neck/back and now it's everywhere. So much for "practicing" medicine. How long do they have to "practice" before they get it right? LOL

Practice does make perfect, so they say. You have a point. I dont know if any longitudinal studies have been done with those with PD. A recent study suggested that the DYT1 positive dystonia may originate in brain stem. So tommorro who knows what they will say about PD. As you've noticed treatment is experimental, in the sense the doctors will try different treatments to see what works. One odd thing about my symptoms which my internist pointed out, is that my PD acts up a few days before a get a cold or another bug. This would imply that something neurochemical/ autoimmune is going on when a infection is in its incubation stage. This happens ALL the time. I talked to my neuro about it and he just shrugged his shoulders. Not to blame him. Everyone is doing their best. ( a round of applause to the folks at NIH/NINDS and others who have been diligent in their search to find a cure). almost forgot HAPPY NEW YEAR.

ANDROMEDA - you're a gem as well as a wealth of knowledge. Does this condition do a number on your emotions. I just feel like bawling....I have trouble buttoning, etc. Fine motor skills as well as speach seem shot

Yes. There is no way the condition cannot do a number on your emotions ( my opinion) The experience can be frightening, especially when you dont know how long the attacks will last and what it will affect, and when they will occur. When one of my limbs twitch, I stop take a deep breath and hope that it doesnt turn into a full blown attack. I found the cognitive part the most frustating, not able to get my words out and the writing. I am also experiencing short term memory problems. That has been going on for a year now, and currently its affecting names and faces. Hang in there. We are going make it!!

ANDROMEDA - Do you just fall or stagger randomly without warning? Do you also experience difficulty swallowing? Speach is just one big stutter fest when this hits. And writing, I've looked back by "taking notes" and some of it is just scribbles.

My memory is shot too. I think so anyway but can't remember. LOL

Seriously, I know the face but the name takes forever to match up.

I'VE BEEN TOLD BY ONE DR. THAT IT IS MS HOWEVER, MY TESTS SAY NO. DR. SAID THAT IT CAN BE MS, NOT SHOW ON THE TEST SO IN THOSE CASES THEY GO BY HISTORY OF SYMPTOMS. Have you been told that???