New to forum,I have generalized dystonia,would love advice from you all!:)

[anastasia]

Hi,I am new,suffer from generalized dystonia,I also belong to the dystonia board and I love it there too!Always looking for friends who suffer the same.I have many questions,I am 38 yrs old and was told for yrs
I had arthritis and then given remicade 2 yrs ago which excaerbated the neurological problem dystonia.It's been a long road and currently having a difficult time with pain and hate the narcotics they give me.I'm on my 2nd movement disorder doc here,I see docs in PA and he said by far I am the worst case he's seen,not a good sign.I've been given sinemet and lodysn for nausea works well but I did sooo much better in staelvo and he insist there isn't a medical reason why staelvo would work better and keeps me on Sinemet.Family and I are very upset with this.Currently need a wheelcair for distance,I shufflw when walking and my posture is bent and the spasms will pull you furthur,so painful.I have herniated disc all thru spine do to the spasms,anyone else?The pain in back wakes me up at night,hips you name it and it hurts,the muscle in legs tighten so bad at night,what do you all do for relief?I have intention tremors anyone else?Sorry for so many questions and to think I have so much more,ha ha,again sorry!Hope everyone has a great day and thank you for any and all responses!:)

[John from Australia]

Just discovered your post, hope I'm not too late to reply. I have a generalised dystonia which is mild most of the time, occasionaly severe as you describe and occasionally goes away altogether.
It was 2001 before I was diagnosed after being symptomatic for nearly thirty years. Not being able to hold down a job caused me to be labled lazy and unreliable, which is true I supose, though not voluntary.
I said to myself many years ago, I will live for the good bits. Sure I will admit the pain and silly apearance can be a downer some days and being a poor man means being single (which I do not like at all) but now that I'm nearly fifty I have to admit that I have had an unusual and interesting life.
In 1998 I graduated with a diploma in engineering, which I only got because I could write just well enough on exam days (lucky hey). My condition is highly variable, some years I can work all summer doing gardening or whatever I can find, other years I am just a grumpy lonley old goat, who cares, I'm still alive and I have a sneeking suspicion that there are some good things yet to come.
Hope is eternal, hope you can enjoy life just for what it is anastasia, and welcome to our wobbly world.

[anastasia]

John,can't believe your still single lol you sound soo funny.Thank you ever so much for your reply!It's nice to hear you have so much hope and live for the day.that's wonderful.Pain makes us lazy or our brain malfinctioning but we are far from the lazy people:)You must be very smart to be an engineer,my father-in-law is one!I have to ask if your posture is ok,do you see a neruo or movement doc,how about meds?????I know I ask alot of questions LOL but always looking for great advise,and how to live a little better!Hope you have wonderful holidays and look forward to helping each other threw this hard life.Bye Buddy!

[hopeful]

Hi Anastasia, You havn't been on for a while. How are you doing? Did you see new Dr's? How was your daughters homecoming dance? I had botox injections all down my left leg and 2 in my left arm. Nov 30th still waiting for it to help walking on side of left foot. Neuro said it could take 2-3 weeks to take affect. I've been so exhausted latley more than usual. Mayo finally called to set appt. for Jan 20th only took them 8 months. like it's no big deal. I've already been diagnosed w/ generalized dystonia by 2 speciaist. I'm on artane 3xs aday plus sinement 3xs a day klonopin 1 at bed time. It would be a 10 hr drive and I could be there 5 days. I don't think my van would make it there Can't afford gas & hotel stay. I don't want DBS. I don't no what more they could do for me than what my dr is already trying. My mom wants me to go. She thinks maybe it;s not dystonia and something they could cure. I know they can't cure it, wishful thinking on her part. I'm not trying to be negative (just realistic} I will call my dr to see if he thinks it would be beneficial for me to go. I've missed chating w/ you! Went to walmart yesterday w/ hubby and daughter. Not fun at all. I was so excited to get out of the house. My hubby was agitated because wheelchair was not working well and kept getting hooked on things clothes racks & such. My daughter wasn't happy because she wanted to get her boyfriend more than a cd for christmas. I told her we couldn't afford more.. Needless to say I couldn't wait to get back home. I feel so alone. Hubby is always in pole barn. Some of my friends havn;t called or came to see me because they don't think they could handle seeing me. I'm still the same person my body just doesn't want to work. I hope your having a good day. Would love to hear back from you! LOVE&PEACE hopeful

[anastasia]

Hi Hopeful,I missed gabbin with you too:)I'm glad to see your on the right meds,it's nice to hear you have docs that listen!My mom says the same thing all the time,then one time I asked her to stop saying it will go away,it kept me in denial.My husband well,it's 2 yrs now and he runs from it,my husband spendI s his time in another room or late at work,he never talks about it and it hurts soo much,my family tells me he can't handle it,very true,but if he was sick I would treat him much better,I get really angry with him out of hurt,ya know.He stopped helping around the house,always complaing about money(makes me feel guilty)the last fight we had he called me a crippled and I really didn't handle that well.It's bad enough we deal with this illness but we also have to deal with how everyone else handles it.My daughter had a great time at home coming,she is still with her boyfriend,he bought her a diamond braclet for Christmas,way to much!Hope,myfriends do the same thing,actually I said the same exact thing you say,literally.We are the same people inside,although there was a time when I didn't want them to see me in the beginning and I still get like that.I went food shopping with hubby and the tremors came out bad,I was soo embarrassed,I would feel that way in front of them too,but I miss them terribly,I tell my daughter all the time how hurt I am my best friend hasn't called me,I tried calling a thousand times,I give up:(And hope go to Mayo,even if it's more for the family,it never hurts to get another opioin,sometimes they are up on more recent treatments.I am going to NY,mount sinai Dr.Tagialti in Jan.I am excited but more scared,docs up here say stress contribues to illness,wouldn't they be?Never feel alone,you have so may friends on the dystonia boards that will help you threw all the good and bad times I know I will always be there for you!Hang in there buddy it will all be OK in the end.So great gabbin with you Happy Holidays and keep in touch,don't hestitate to email or call if you need to talk,K,my e-mail at home is [e-mail]!!!!!!!!!!!Happy Shopping!

[John from Australia]

The problem with friends would be simelar if you had some sudden good fortune instead of the misfortune of illness. Lottery winners often report loosing touch with old friends to. The sad fact is that friendship is not what we thought it was. The good thing about it is that we can now go forward with a better understanding of where we are realy at.
My famly get so angry with me because I talk about what is happening to me. Truth is I have learned to face the harshness of it because I have no choise. The problem arises when I speak of it because that leaves them no room for denial and reminds them of their obligation. My father has never acknowleged my problems at all, if I speak of it he will act as if he has not heard me.
When I was very young my mother would often repeat an old story to me. Before cars and camels, people would walk across the australian outback in family groups. Water and food were difficult to find and there was a danger that the soles of your feet would crack form walking the hot ground. When this happened your family would simply continue without you, not even stopping to say goodbye.
This story may not be true, who knows, but it does beautifuly describe our obligation to put our own selves first. As a good friend said to me recently, 'John, you must look after yourself better. What use will you be to anyone else if you do not look after yourself first?'
These things go against our nature but as damaged people we must admit that our swashbuckeling days are mostly over. Now is the time to concentrate on the truth that confronts us. There lies our strength. Acceptance is the final hurdle made from the greif of loosing our health. Once we get over that one, then we can move on and start to enjoy ourselves a little more.
This was ment to be a comment not a speach, please excuse.

[John from Australia]

Hi Anastasia, to answer your Q's; posture is OK as long as I keep streching to maintain range of movement. It's the same as when you do a lot of walking, it gets harder to touch your toes with your legs streight. Tremour can be pretty good exercise sometimes and the muscles shorten as they strengthen, I strech yoga style for a total of an hour a day or more but I still have to remind myself to hold my head up to stop slouching. Moveing the chin backward a half inch seems to ease the tremour in my neck to.
As for meds, since late last year I taken beta-blockers to keep the tremour in check and they work well for me. Added to that I take St. Johns Wort herb to help keep my mood even as my condition fluctuates, it's not recomended for long term use but I have taken it for three years now. I realy notice if I miss a dose of either of these so I'm glad I have them to use. The Levodopa drugs do not work on me at all, who knows why.
Am blessed with a good GP but stoped going to neuros once the diagnosis was confirmed. I have to get a neuro review occasionally to qualify for the disability pension here in Aus. Not wishing to boast but we have good access to medicine here as long as you don't live out in the desert. If you are interested I keep a spasmodic blog at sillihistory.wordpress.com which is a patchwork of random thoughts, complaints and a little philosophy, please enjoy :-) Hopeing to extend its range to the USA some day soon so if you would like a twichy visitor...

[Erin]

Hi I have written on the dystonia (rather than generalised forum) as well but I just wanted to say that I believe my dystonia is generalised and someone said they have to use a wheelchair for distance well I have to use a wheelchair ALL the time so I understand that one. I dont fall out of chair but have a seatbelt I have almost fallen down a million times but grabbed onto something and stopped myself before this happens. Fatigue and stress do not help the tremors or episodes. I am on many meds for pain I also have fibromyalgia and I believe the dystonia makes the fibro worse. My legs also cramp at night I put a cushion under my knees and also take magnesium tablets cause that is suposed to help cramps. They are less. I also have many questions about dystonia so i am glad this forum is here to ask questions.

Where are you in Australia? I am in Adelaide, medical professiion MAY be good here BUT you have to see the right people who give the right diagnosis and know what treatments/options etc there are when you are told you have dystonia and that it will go away thats it temporary and just see a physio etc and NOTHING she does works and shes a neurophysio and your condition worsens etc you dont believe access to medicine is good AND then you go to the dr and they dont have an adjustable height examination bed so theres no way for them to examine you...its not all brilliant! The funding availability for disability services (at least in SA) is not very good either. I am glad you have a good GP John mine is not brilliant and for complicated reasons I am not able to switch which is very frustrating. I find this whole thing very difficult because I wish I had a prognosis like they would say its long term these are the treatments available continue with your life but all my drs insist that everything will go back to what it was like before the accident/serotonin syndrome and I am unsure that that is actually the case.
Erin

Erin