Tired of being referred.
Replies to This Discussion
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Permalink Reply by BDrake on -
I've been referred so many times It's not funny, because the doctors just didn't have any answers. And then finally when I got somewhere that was supposed to be experienced with Dystonia, I was accused of "doctor shopping" in so many words. I think the actual wording was [paraphrased of course]:
Your dystonia is stress induced. See a pychologist. You have to believe what I'm telling you or you won't get better. Why have you seen so many doctors? You've already seen 14, it's not going to help you to see 15...16...17...
First off I had seen so many doctors because, it took 7 doctors just to get to the 8th one that finally diagnosed me, then he referred me to his collegue for botox, when botox didn't work like she expected she just threw her hands up with an "I don't know" and that was that...so off I went for answers...which led to me seeing a different doctor and then the referrals started again....
Anyway...as for the psychologist, I had tried everything that was ever prescribed. I approached this no differently. I did see a psychologist. And my dystonia became more manageable, but simply because he helped me deal with the secondary emotions that follow any life changing event. But by no means am I better. My condition has even progressed/migrated but the spells don't come as often and some don't last as long. [We did discuss the whole doctor thing in therapy and for my emotional well-being I expressed I didn't want to see any more doctors...he agreed and said it really doesn't matter what they think or don't think..they'll never know dystonia like I do. And as long as I felt like I could manage and and be OK with it, that my experience told me seeing another doctor wouldn't fix anything.]
But this brings me to my biggest disire. I don't exactly expect a "fix"...I can't exactly but into words what I'm wanting other than this: I know I would like a neurologist/MDS to take me on as their patient. Even if they don't have any answers, just so they can see me every few months. This way they'll get a bigger picture...they'll be more apt to see me at my best, and my worst, and at my most common. Then and only then do I feel they'll really understand me. How are they going to really know my case by one 20-30 minute visit? Because that's all it ever is. One visit, followed with an "I don't know"...go here...then the cycle contines, until in my case, I was eventually referred to an MDS that didn't see patients younger than 65. So I was left hanging...so to speak. My referral wouldn't see me and my referring neuro didn't want to see me.
It's been over a year since I've last seen a doctor and I've just now decided to be pro-active and start all over with my very first neurologist that referred me the MDS's at UAMS (where I was first diagnosed). I will approach this appointment with my diagnosis, my history, followed with some new things that I don't believe to be dystonia related and then hopefully explain to him my desire to have ONE doctor that even if he doesn't have the answer will take me on as his patient and see me ever so often...maybe every 3 months or so.
But then again...after typing this, I'm having doubts again...Simply because of all the emotions that follow.
Anyone else? Comments?
Becky
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Permalink Reply by bentnotbroke on -
Has anyone heard of a rare condition called "Conversion Syndrome". A young woman I know has been through many docs & treatments..thought she had the dystonia dx down cold & after NO treatments had any effect on her symptoms, is being told this could be the condition she has. Shei is on the verge of trying Cranial Magnetic stimulation.
I am wondering if this could be your final diagnosis, if traditional Dystonia treatments don't relieve anything??? Good luck with your search!!
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Permalink Reply by Imove on -
Conversion Syndrome is never a good thing to be told, and it's not so rare. It's a psychiatric term used for many health issues. It's a nice way of saying the patient's symptoms are all in her head. Google the term and you'll see what I mean. It's a handy label to hand out when treatment doesn't work, simply because the physician doesn't know what else to try and decides that it therefore simply has got to be all in the patient's head. Somtimes patients are given this term if the physician isn't familiar with the wide range of dystonia symptoms or the many types of dystonia --- if they don't know, well then it MUST be Conversion Disorder! It's an insult and condescending to be given this diagnosis. As advanced as medicine is, it doesn't know all there is to know and never will, because new illnesses are constantly being discovered - there are many many diseases out there that medicine hasn't figured out yet. And when a physician is not able to pin down a diagnosis or if treatment attempts fail, it's just an easy way out to tell the pt it's Conversion Disorder (also known as a somatic illness) rather than admit medicine cannot provide an accurate diagnosis at this time or cannot provide treatment, whichever the case might be.
~Connie~
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Permalink Reply by BDrake on
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YES!!!! THANK YOU CONNIE!!!!
I wanted to reply, but felt I would come off too negative!
~Becky
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Permalink Reply by marie on -
if i was a dr id be embarrassed to dump people into the conversion pool given how tech.is always changing.pd and tourettes were pscogenic andautism was moms fault.why arent movement drs traineed to recognize even the rarrest movement disorders.connie and becky ,you nailed it.marie
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Permalink Reply by beka on -
Anyone telling you that dystonia is in your head or somewhat related to a psychiatric origin, needs their medical license revoked. The problem is that too many physicians are still seeing and viewing dystonias Oppenheimer did in the early 20 the Century- a disease of hysteria. There should be a strong campaign advocating the correct nature of dystonia as a TRUE and VALID disease.
Only then, will patients recieve valid diagnosis and the constant criss-crossing from one MDS to another will cease for everyone.
beka
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Permalink Reply by Robin Wood on -
Hi Bentnotbroke,
Please tell your friend that not every body responds to treatment and that there is no one treatment that works for everybody. Just because she has not responded to treatment does not mean she doesn't have dystonia. I have been non responsive since my onset some 12 years ago. I have read where 1 out of 4 are non responsive to treatments, that means for every three that are treatable, one is not.
If you search "Conversion Disorder" in the search box at the top right, I'm pretty sure you'll find where it's been discussed here on WEGO
Robin
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Permalink Reply by bentnotbroke on
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Thanks to all who have helped me understand 'conversion disorder', I had that feeling. Unfortunately this young woman is a teen & she & her family are desperate for a diagnosis & cure. I feel I should be careful on giving advice to these folks..but I will write & suggest they 'google' or search here (I'm pretty sure they are members of this group) for the disorder & hope it gives them a better understanding. Thanks Robin, Marie & Imove!! Always learning something new here!!!
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Permalink Reply by beka on
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It has been discussed - under the Psychogenic Dystonia Thread.. Lots of Good info there...
beka
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Permalink Reply by bkaren46 on -
Hi Becky,
I am really sorry to hear what you have been going through. It's hard enough dealing with not feeling good never mind not having the support from the medical community, family or friends. It is really good that this site is available where other people can relate and understand what we are going through and offer advise. Karen
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Permalink Reply by ramona on -
I very much understand your hesitancy in getting back onto the diagnostic path. It can be so very frustrating, as many of us know. You know my story, but I will say again, for the sake of others, that I was diagnosed by the top MDS in the country with psychogenic myoclonus after he saw me for only ten minutes - first visit. He assured me it would not progress, since it was psychogenic.
Later, another doc at a top University and teaching hospital came to the conclusion that I had Conversion Disorder, BECAUSE the movement disorder HAD progressed. He saw me over many months, so his basis for the same diagnosis (in effect) as the other guy was completely opposite. Go figure.
Is there any place you can go and start fresh? Are you willing to travel? If you are, then I would suggest going to a doc who had been KNOWN to say that dystonia is NOT caused by stress and/or depression. Don't tell him what other docs you have seen - even if he asks, explain that you want a fresh start on the diagnostic journey. I would suggest to not give them loads and loads of information at first, as it might seem like you want them to go down the path you have already prepared. Most docs like to make the diagnosis themselves, without input from the patient, although there are exceptions (rare, but valuable!).
There are indeed docs who will tell you that dystonia is not caused by stress but it is exacerbated by stress. I had given up on docs, too, but decided to follow through with one last appointment after the conversion disorder diagnosis. That was finally a doc who told me (on the second visit) that I had dystonia and it was not caused by stress.
We understand your frustrations - be sure to ask for recommendations for docs if you do decide to go that direction again.
Blessings
Ramona
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Permalink Reply by beka on
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Believe me that the right doctor exists, who will validate your Symptoms - Becky. But, you must be proactive...begin with a take charge attitude and not be swayed by what some of these physicians can say... It took me 5 years to be diagnosed with dystonia. And that's being within the medical field. So, I understand what people go thru...
YOU CAN'T GIVE UP...
beka
One question - Do you want to continue living with the symptoms you have described or do you want to be set free by a valid diagnosis ??? Only you can answer this one...A CHOICE...To live one way or another ???
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