First of all Arlene I do not know what dystonia is.Can you explain it to me??? I do understand your feelings of anger.I had 6 oral implants put in to put a stop to over 30 oral surgeries thinking this would end all that.It took me a year to get the oral surgeon to admit I had an infection.I cant go into it afterall you would be here all night reading it.

It took me from April to Sept to finally find an ears nose and throat doctor I felt had any common sense.She did surgery on my sinuses because I did have acute sinusitis.And she did a culture which would have answered my question about the infection a year ago.But I have staph and yeast infection in my mouth.Now I have stomach problems fron all the meds for infection they eat up my stomach.The inf. dis. doctor said when I told him couldnt he give me I.V. antibiotics so that my stomach would not be torn up.And his answer was that the infection didnt care where the medicine came from.Either take it or die.Can you believe that.So it has taken another year to get out the infected oral implant and on top of that it started pouring out puss.Which made me have to have yet another surgical procedure which I screamed throughout the entire ordeal. 

My poor dear husband cried though the whole thing.Because I asked couldnt he schedule a surgery for this procedure as he did before.His responce was that after he got me numbed up it would only take about ten minutes to fix it.Getting out the bone slivers.I knew I wasnt going to win this one so I said you better get my husband in here to help hold me down because if you are going to stick needles into a place i cannot even touch with my tongue I am going to buck.And he said well you cant do that.I said well you know if someone said they were going to put a needle in your eye dont blink what do you think would happen

There are only so few things we have conrol over.And then when it was over my hair was dripping wet with sweat and so were my clothes.I told him a weeek later when I went back for hin to check on the progress I hope you have your bullet proof vest on because I am packing an oozie.He laughed but not very nicely.

I have had staph and yeast in my body for 2 years.My stomach and my head hurts.My psychiatrist thinks I could have Multiple Sclerosis.Because of my dropping things and never even know they fall out of my hand.The ten thousand other symptoms also refer to as a broken brain.We have over 60% if our antibodies in our stomach.My stomach gets so big and destended I swear I look 8 months pregnant.So I have to see about that as well.It takes me 30 inutes just to write down my diagnosis.So girl if there is anyone who understands is sure is me. Good luck and I will pray for you as well.For those of us who must stick together....Jo

zoe ashcraft

3/25/09 1:56pm

Jo, 

 

I'm horrified at what I think I understand you to be saying- and yicks- I've worried about a similar situation for myself-- if you care to discuss it further, that would be great-- 

I hope you're ok now and have gotten some good resolution. Btw, garlic- is a great infection killer- if you don't want to take antibiotics- it sounds ridiculous, but I've seen some good results on occasion- I don't know about a systemic problem though- 

zoe ashcraft 

arlene

3/25/09 3:12pm

Well from what I have read up on DYSTONIA is where your muscles can't relax.

That part of your brain that is sapose to tell you to relax, don't work right. So the brain and the muscles don't communicate.

It was 2 years after I injured my back and I started to get this bump in the rt. shoulder blade. When the bump got bigger, the more tense I would get from my shoulder to my neck. It sometimes even goes up tp where my skull ends. That's when I get the headachs, bad. Since I have been with my boyfriend, which will be 7 years this April- he has tryed to mesage that part. The last few years he has had to use his elbow and use all his weight on it. It feels so good, and it does help release it a bit, but comes back real fast. If he were to do that on m left side, it would hurt very bad. My 14 year old son does it also. The both can find the lump instantly. I have used a ball in a sock and leaned up against a wall. I push so hard that I can hear the wall crackeling.The heating pad can be all the way up and I can barley feel it.

 

Don't you get this feeling of terror when you walk into a Dr.s? I know im gonna be thrown to the curb. This Dr. was rude at first, them maybe he realized something and was nice. I thought I was doing or saying something wrong at first, but then I had read on hear that all people in chronic pain get treated like crap.

I wish you the best also. I'm trying to be strong, but sometimes you just get sick of having to defend yourself all the time.

I know for a fact if I didn't have my 3 year old girl, that I would be on the couch every day and would probley wilt away.

EVERYTHING HAPPENS FOR A REASON- and I know now after taking so long to get pregnant, that she had to wait so she could be my reason to keep going.

Best wishes to you.

Thanks for you response.

Jo

3/25/09 8:47pm

Hi,Arlene.Well it feels like I have alzheimers right now.I have to correct almost every word I write .That is why I usually write in all caps.If it is ok with you I will write my future emails that we share alone together in the future.It is strange to hear something that you never heard of before only to find out you have it all along.I have that in  the muscles that run parallel to your spine.My pain mang.doctor gave me tizanadene and I later was told they were given to people with multiple sclerosis.So that is another reason to me to believe that sometime soon someone is going to put 2 and 2 together and get 4.If I don't have it I have something close to it.There are so many new diseases out there that there are doctors in med school.I really believe that.Look how they never figurered out where the Legionnaires Disease came from

 

 

Could have been germs kids always carry around with them.Who knows,Well the fact is that now we do have computers and we can do our own research and find out which of the diseases that are so acutely similar... is ours.And you know what.It just might be one sentence that changes out everything for you.It could be from the tv or a magazine or just something someone else says before the light bulb goes off.But you are right.They keep treating our symptoms instead of us.We want you believe us truly.Why would we choose this hell over having to go to work.I would give anything to be healthy and be able to work and cook dinner and be with friends instead of what usually happens every night.I guess we are that generation who had to go through hell before we got pain medications.Not narcotic seekers.I am so tired of all of that.It is about as boring as someone telling me thay arent prejudice when they find out i have 3 by racial grand children.They should not have to have their complexion referred to.Anyway I do agree with you.Why is the diagnosis on our shoulders.Most of the time I am closer than the doctor and I dont have to pay for a  fancy house and pool etcc...they went to 12 years more of schooling than I did to get all that so why dont they earn it.Why cant they go back to continued education.I am with you girl on that one.I am about to keel over but just wanted to check in with you.I was just too tired tonight to set up our one on one site.Well Scarlett tomorrow is another day.Well if  I think about it today I will just go crazy so I will sleep tonight and worry about it tomorrow.That was it.I'll think about it tomorrow. Hang ten girl....Jo                                                                                                                                                                                 

Calistoah

7/22/10 5:30am

I would suggest finding a different doctor. And specifically a neurologist for dystonia, since they're the only ones that can give you that diagnosis. Both my GP and Neurologist are very kind, very amazing people. And while I am NOT excusing any rude behavior towards patients, please understand that doctors are very overworked and overbooked. Not only do they have office hours, but they are on call at hospitals as well. Also, don't be afraid to be direct with them. Don't be shy about anything.... When I was pregnant with my last child, I switched doctors towards the end. Actually, I only had one appointment with my new doctor before I went into labor. Anyhow, I wanted a sono since I had chickenpox for 2 months during my pregnancy. The attending didn't want to give in, but I put my foot down and my doctor stood up for me and said I needed it for peace of mind. During labor, the anesthesiologist punctured a vein and messed up my back something fierce causing my dystonia to become worse(mine is hereditary). My doctor immediately contacted my neurologist and set up an appointment before I even asked. Not all doctors are rude and insufferable, I promise. Find a doctor that is fairly new. They're much nicer and are more inclined to get to the root of the pain and find a way to help you out. And if you feel you need something done or looked into... do NOT back down. It's your body and you know it better than anyone else. You know when something is wrong and should be heard. I truly hope everything works out for everyone.

I was fortunate after 6 years,  to find a good Rheumatologist who keeps up with FMS and its related symptoms...

unfortunately I am a severe case and pain meds do not work for me....

I asked my Rhemy why other Drs were always such a pain and put us through so much !

He said mainly because they cannot understand FMS and feel frustrated because we do not respond to usual treatments....

He also told me there are three types of addictions

1.  People who will take anything and doanything for a high

2, people who keep taking pain meds when they no longer need them. they are addicted tothe high

3.  People who have chronic pain and need the medications to have a semi normal life!

Also unfortunately when a Doctor sees our med list they are sure they are dealing with a druggie or a psyco!!

I have fibro,myofacial, chronic fatigue ,twofailed back surgeries, shoulder surgeries,osteoarthritis...it goes on!

Luckily my Rheumatologist has called some of the Drs and set then straight about my condition..

For any unexplained pain in back or neck,it is an assumption that it is FMS related..so they put us through all this crap before they treat it...Ihad a back operation that lasted 6 hrs! he had to pick out tiny bone pieces , do bone grafts and so on...and he was sure it was Fibro pain!!  out me through all kinds of tests before and needless to say I have another Dr now.

I always ask if the dr or medical personell treat Fibro..Still it is so stressful having to go to Drs....trying to explain..and No me losing 10lbs wont make me feel better!

Presently I am going to a pain clinic for my shoulder and neck pain..has helped a little...I use a tens unit and it helps  too...

Never In my wildest dreams or nightmares did I ever think I would experience so much pain,and it is pretty widespread now...but we carry  on waiting on that miracle drugs...

And praying that more people will catch on...and realize Fibro is a slow death! I hate the tv ad for a certain FMS drug..the actress looks and sounds way to happy happy!

Don't misunderstand me...I have a good life, and I do what I can to keep going...but give us a break will ya!

antiquityhill

3/28/09 10:16am

ugh.

 

Your doctor doesn't seem to know the difference between addiction, tolerance and dependence.  This kind of mentality is scary to me.

 

According to this link -"The American Academy of Pain Medicine, the American Pain Society, and the American Society of Addiction Medicine recognize the following definitions and recommend their use.

I. Addiction: Addiction is a primary, chronic, neurobiologic disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.
II. Physical Dependence: Physical dependence is a state of adaptation that is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.
III. Tolerance: Tolerance is a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug's effects over time."

 

A pain patient may be dependent on a drug needed for daily pain control and quality of life.  A pain patient may become tolerant of the drug they're prescribed for control of their condition.  Unless they begin using the drug compulsively and despite harm and with impaired control of their use, they are not "addicts". 

 

I don't think I'd want my doctor to think he/she's treating an addict.  I want a doctor who is going to treat a person in pain.  Just some thoughts...

 

Ellen

babygreen275

3/30/09 11:13am

Amen to that tv commercial! I hate it..it makes it look as if 'just take one pill and feel allllll better! I was dx with fibro and rheumatoid arthritis in 2004 and lost my job as a result of missing work. Like the others, I had to find a new doctor after mine (used her for 20 years) died unexpectedly..I went to the dr my husband uses and he flat out told me he 'doesn't believe in fibro'! Luckily I found a new one that does and treats ALL of me and all my diseases. Like you, pain meds don't work on me, and my dr said the only thing that will work now is morphine, which I don't want to get on right now.

Anyway, just wanted to thank you for disliking that same commercial. It makes me feel better to know that I am not the only one. Hope everything goes well for you. I'll put you in my prayers.

Hello.  I have Dystonia.

Dystonia is a movement disorder similar to Parkinson's Disease.  Part of the brain tells the body to move or contract, without consciouis control by the patient. This can result in the sensastion of tightness or pulling, spasms, or contractures, twisting movements, or even jerks which can range from aggravating to excruciating.  Dystonia is the third most commono movement disorder.  It takes an average of 5 years and as many as 15 doctors to get diagnosed correctly.  Most doctors have never seen it, or cannot recognize it.  Unfortunately, many patients are mistakenly told "it's all in your head", and therefore miss out on important treatment.  Depression is common, especially in those who lack a diagnosis.

Dystonia happens in the brain, although you see the results in how your muscles move or contract.  The basal ganglia is the part of your brain that helps you move.  Nobody knows what happens in the basal ganglia that causes dystonia - there has been little research done.

Dystonia can be primary - a disorder by itself.  Dystonia can also be secondary - caused by another disease, disorder, or injury. Dystonia can start in infancy, or an adult.  Dystonia is given a name based on what part or parts of the body are affected.  One or more body parts may be affected, or it may affect the entire body.  There are many kinds of dystonia.  Dystonia is a symptom of something happening in the Basal Ganglia.

Common causes of secondary dystonias include - metabolic derangement such as hypO or hypERthyroidism, autoimmune disorders like Lupus, head injury which may have occurred years prior.  An important preventable cause can be specific medicines which treat nausea and some mental disorders.  Sometimes when these medicines are stopped the dystonia goes away.  Sometimes it is permanent.

Usually the first thing that is tried in dystonia patients is a medication called Sinemet.  Sinemet is basically Dopamine - an important neurotransmitter in the brain.  Sinemet can have remarkable affect on those who have Dopamine issues causing their dystonia.  Many children have been diagnosed with cerebral palsy when in fact they have dystonia that can be treated with Sinemet.  It's not unusual for people with this kind of dystonia to be confined to a wheelchair until a dose of the medication makes them able to walk and function again. 

Dystonias that affect small areas of the body like the hand, neck or face are often treated with Botox or Myobloc.  Patients often become immune to these therapies eventually, so many doctors wait until the patient is in serious pain before starting the treatment.  Once toxins no longer work, surgery and some pretty heavy duty drugs like Klonopin are used, first orally, then eventually via a pump that puts the drug directly into the spine, bathing the CNS to avoid side-effects.  DBS (Deep brain stimulation) is the last thing tried usually.  It involves implanting electrodes deep into the brain, with an attached battery in the chest.  The pulses to the brain somehow allow it to function more normally.  There is significant risk to DBS and it doesn't always work.  Often re-programming is necessary and when it once was helpful, eventually it may stop working as well.  DBS is also used in Parkinson's patients. 

Dystonia can result in 'Storms'.  This is where the dystonia affects the entire body.  It is dangerous and excruciating beyond kidney stones, childbirth, TN.  A storm may last days if not stopped by medicine.  

Since you are also diagnosed with Fibromyalgia and arthritis, I would seek out the advice of a Movement disorder specialist used to dealing with dystonia.  Some people with fibro and arthritis may have autoimmune issues that aren't being addressed including thyroid (Hashi's or Grave's), Lupus, Sjogren's, RA, etc.  Seeing a rheumatologist may be helpful to uncover any of these you might be dealing with.  Treating someone with secondary dystonia is important, because in treating the disease causing the dystonia, the dystonia can go away. 

I belong to a fabulous support group for Dystonia called Care4Dystonia.  Working in concert with WEGO Health, they have a very active online group ready to answer any questions you might have.  Beka Serdans, nurse practitioner, author, advocate and dystonia patient with DBS  runs care4dystonia.  You can peek in and read the archives here, or go to www.care4dystonia.com .   There is a lot of info about treatment options, clinical trials, and support.

I hope this has been helpful.  Please write if you would like to talk about your diagnosis.  It's very confusing because there isn't much info out there, and most was written by people who have never experienced Dystonia.  Dystonia is considered a rare disorder, and therefore often missed and ignored.

Hang in there....!

Ellen

arlene

3/30/09 3:37pm

Thank you,

That was more info. that I HAVE FOUND ONLINE.

Im kinda wondering if I even have Fibro now.

When  go to any Dr. ad they ask questions about y pain, and I start to explain

and I get to the Fibro part, hey just kinda skip over that in all.

Many Dr.s don't believe fibro is out there.

But now with the Dystonia and on a medication search, again. Im not sure if I should tell my Dr. that this med im trying is not working that well, or just leave it alone, since it works a bit.

I was sapose to start p.t. last Friday, but I just could not make it. The pain had increased so much. Going to p.t. would of just sent me to the e.r.

I didn't have time to waste in the e.r.

But I guess im still in shock and not sure what to think. Not sure what to believe after being diganosed with 2 differant major pain problems.

antiquityhill

3/30/09 6:43pm

Arlene, Oprah is doing her show tomorrow (Tuesday, March 31, 2009) on Dystonia and Parkinson's.  Now, Dr. Oz doesn't know a whole lot about Dystonia, but they will have a patient on that experiences a type of dystonia that appears to affect her with right sided spasms.  I haven't seen the piece tho.  :)  Just guessing.  It might be interesting to watch in case you find some information that could be useful to you.  Be aware that info provided will likely be fairly elementary tho.

 

Don't get discouraged.  Take it as slowly as you need.  Do lots of research.  Talk to those who are experiencing it to get some ideas on potential treatments, doctors that are helpful, support, even ways of coping. 

 

You are not alone!

 

E