Discussions By Condition: Medical Errors

One of the most mis-diagnosed

Posted In: Medical Errors 11 Replies
  • Posted By: texasannie
  • November 25, 2007
  • 11:18 PM

For several years I had bouts of strange symptoms. Usually would not last long. Mild tremors, just a little off balance, spells of extreme sleepiness, long list. Usually with rest they would clear up.

Went to a doctor when it first began in early 90's and diagnosed with anexity disorder.

Over the years the spells got closer together and more severe, started falling, spasms in back, eventually thighs, feet, upper arms, and neck. tremors worsened.
3 years ago, I just fell over, no reason. so went to my dr who referred me to neurologist.
1st diagnosis--MS, mri showed no leisons
2nd diagnosis--Parkinsons, spent a year going through different types of meds, none worked for more then a few weeks.
Sent to a Movement Disorder specialist
3rd diagnosis--parkinsonism
He performed every envasive and painful procedures he could think of. I kept telling him I felt like it all had to do with my muscles, but he just laughed since most are either too rare, or develope in early childhood.

I became so frustrated I returned to my primary and told her all that had been going on--for some reason I thought that with all the neurologist I didn't need to go to her again for these problems.

boy, am I glad I did. She made me an appt with a neurologist who reconized my symptoms right away and order both lyme test and GAD.
Lyme was neg, but my GAD results plus his clinical evaluations diagnosised me with stiff person syndrome.
He had seen one other case before, and that was what made him suspcious.

Now on the right medications, I am doing much better. still some good days, but bad days are less often and less severe. though i do know this is progressive and so am just enjoying the good days to the fullest right now.

My new Neurologist told me persons with stiff person syndrome are usually misdiagnosed for years with:
MS
Parkinsons
Fibromygalia
anexity disorders
before anyone actually runs the right test.

It is considered so rare that most dr.s never order the GAD test.

There is some question also, as to is it really as rare as thought or just that so many live mis-diagnosed?

I am now trying to find others for an online support group.

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11 Replies:

  • This is not progressive. You are mis-informed. Cognitive behavioral therapy looks like the best treatment, along with (herb pharm) Kava...http://en.wikipedia.org/wiki/Generalized_anxiety_disorder
    Monsterlove 2921 Replies
    • November 27, 2007
    • 03:36 AM
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  • This would be really interesting therapy:http://en.wikipedia.org/wiki/Light_therapy
    Monsterlove 2921 Replies
    • November 27, 2007
    • 04:07 AM
    • 0
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  • For several years I had bouts of strange symptoms. Usually would not last long. Mild tremors, just a little off balance, spells of extreme sleepiness, long list. Usually with rest they would clear up.Went to a doctor when it first began in early 90's and diagnosed with anexity disorder. Over the years the spells got closer together and more severe, started falling, spasms in back, eventually thighs, feet, upper arms, and neck. tremors worsened. 3 years ago, I just fell over, no reason. so went to my dr who referred me to neurologist. 1st diagnosis--MS, mri showed no leisons2nd diagnosis--Parkinsons, spent a year going through different types of meds, none worked for more then a few weeks.Sent to a Movement Disorder specialist3rd diagnosis--parkinsonismHe performed every envasive and painful procedures he could think of. I kept telling him I felt like it all had to do with my muscles, but he just laughed since most are either too rare, or develope in early childhood.I became so frustrated I returned to my primary and told her all that had been going on--for some reason I thought that with all the neurologist I didn't need to go to her again for these problems.boy, am I glad I did. She made me an appt with a neurologist who reconized my symptoms right away and order both lyme test and GAD.Lyme was neg, but my GAD results plus his clinical evaluations diagnosised me with stiff person syndrome. He had seen one other case before, and that was what made him suspcious. Now on the right medications, I am doing much better. still some good days, but bad days are less often and less severe. though i do know this is progressive and so am just enjoying the good days to the fullest right now.My new Neurologist told me persons with stiff person syndrome are usually misdiagnosed for years with:MSParkinsonsFibromygaliaanexity disordersbefore anyone actually runs the right test. It is considered so rare that most dr.s never order the GAD test.There is some question also, as to is it really as rare as thought or just that so many live mis-diagnosed? I am now trying to find others for an online support group.-----------------------------------------------HiWhen I was reading this, I immediately thought what I experienced back in college. I found out that it was epilepsy related.I have Myoclonic Seizures.Myoclonic seizures basically what it did to me was: Tremors in my legs, back of my neck and hands. (It would look like spasms).I got tired alot and sometimes it would happen in the middle of the night.I would even get the odd sharp pain in my head when it happened. (Front and Back).I had these Myoclonic jerks (as they call them) since 1993, my neurologist at the time would not doing anything about it. I had these constantly from 1993-2000 with NO MEDICATION. Just tests, I felt like I was a test mouse or something. My neurologist at the time said "You have a Nervous Disorder". I was not believing that for a moment. But had to believe her because afterall she's the neurologist.Then one night in 2000, I took some Nyquil for a cold and what happened? My spasms went out of control. I was more spasms. I didn't have a full blown grand mal: where you shake all over and your head jolts alot.I only had twitching in my legs and of course my crying got the best of me.That was in Year 2000, I fell down the stairs spasming. My mom was just about to go to work and I told her I'm not sure what is happening to me, but my head was hurting and I could not stop spasming on my legs or my hands, eventually I dropped to the floor.My mom (an RN-Thank God), called my dad and off to the hospital I went.In ER, they saw me right away. There was a neurologist on call and when my mom heard who he was (she worked at this hospital), she kept reassuring me that he will take care of me.The doctor first came in to check on my situation and asked the neurologist to further investigate my head pain- my head went side to side alot and my spasms that didn't want to stop. I was able to talk but I wasn't able to say much just where the pain was.He suggested the neurologist on call.The neurologist came in: Checked my vitals, Checked my pulse (it was racing), and asked what I had. My mom said Nyquil for a cold. The neuro gave me some water to take out the medication out of my system.The Neuro gave me some medication and it seemed to numb out my spasms in in under 2 minutes. It was Epival.The neuro asked me who I was seeing and what she said about them.I told him, she just said "Its a Nervous Disorder and that she could take me out of my job, my school, driving and anything in life I wanted to do=which I did not want."The neuro on call assured me that was not going to happen, but he mentioned how he was taking on new patients.I found out later he was the Chief of Neurology at this hospital. So obviously I transferred my neuro's because the one I had was no help. I was glad I did from 2000 to 2007, I have be spasm free, even though my neuro is retired, I only have to have my EEG's done every 2 years, phew, which come back normal every time. I have a new neuro from where I currently live and he reminds me of the neuro that was on call, He's a ***l lot better than who I started off with the Female Neuro.Just be careful. Misdiagnosing is no fun. I know I've been there.The worse part of being diagnosed incorrectly? I spent 5 years in College not able to concentrate because of the spasms, because everything I held I would drop. It was a nightmare. I have since completed 2 night school classes and passed both of them. But when I went to college in the years 1993-1998, I passed some, and failed most because of my poor concentration due to these spasms and I cried alot because of it. I don't cry anymore unless it is to do with a death or some other pain due to sickness I get like Flu or I can't breathe or something.But yeah Being misdiagnosed it really blows!! Big Time.*hug**Been there done that*:eek:
    stormigrl 2 Replies
    • November 28, 2007
    • 01:03 PM
    • 0
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  • Hi Stormi, that's terrible you had to go through that while trying to sustain a college degree! but what finally helped you in the end? are you on medication now?
    mysterybette 9 Replies
    • January 11, 2008
    • 07:27 PM
    • 0
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  • Hi Texas Annie!I am so sorry you had such a hard time getting your stiff person's syndrome diagnosed!I have an illness in the same family of disease as yours. My illness is called Hashimoto's Encephalopathy and is a rare complication of autoimmune thyroiditis.Both stiff person and HE, as well as a few other diseases, fall under the category of "Autoimmune Encephalopathies". It is very common for people with our illnesses to be told it is depression, anxiety, and/or to be worked up for a host of other neuro diseases such as MS. And most doctors- including neurologists have never heard of them.Is your online support group for those of us who were misdiagnosed, or for people with SPS? If it's for SPS, there are two sites you may want to check out, braintalk and neurotalk. They are both sites for patients with neurological diseases. If your support group will be for the undiagnosed, count me in!
    Anonymous 42789 Replies
    • January 21, 2008
    • 11:28 PM
    • 0
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  • This is not progressive. You are mis-informed. Cognitive behavioral therapy looks like the best treatment, along with (herb pharm) Kava...http://en.wikipedia.org/wiki/Generalized_anxiety_disorderIt is progressive as I am finding out personally as well as by research. I began Cognitive therapy years ago for my panic attacks and does not work with Stiff person syndrome. Difficulty swallowing has increased, ended up in hospital with aspiration pneumonia.Now having chest wall spasms and lower intracostal spasms. Had 5 day treatment of Ivg and it has reduced the spasms and my swallowing is better.But thanks for the advice. I do use chakra meditation to help keep me off narcs for pain.
    texasannie 11 Replies
    • December 4, 2008
    • 07:11 PM
    • 0
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  • Hi Texas Annie!I am so sorry you had such a hard time getting your stiff person's syndrome diagnosed!I have an illness in the same family of disease as yours. My illness is called Hashimoto's Encephalopathy and is a rare complication of autoimmune thyroiditis.Both stiff person and HE, as well as a few other diseases, fall under the category of "Autoimmune Encephalopathies". It is very common for people with our illnesses to be told it is depression, anxiety, and/or to be worked up for a host of other neuro diseases such as MS. And most doctors- including neurologists have never heard of them.Is your online support group for those of us who were misdiagnosed, or for people with SPS? If it's for SPS, there are two sites you may want to check out, braintalk and neurotalk. They are both sites for patients with neurological diseases. If your support group will be for the undiagnosed, count me in!Sorry I never answered but forgot about my post here. Just happened to run across it today. I have been posting in Muscle thread. I haven't started a support group, but there are some people posting in the other thread who are willing so we may get it together.Thanks for the info on braintalk and neurotalk. I will check them out.
    texasannie 11 Replies
    • December 4, 2008
    • 07:35 PM
    • 0
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  • That is so upsetting. It is so upsetting that people have to go though problems like this. I think some of it is because Dr's are in such a hurry to see as many people as they can they sometimes just go with the safe call. The other thing that can contribute to this is presser insurance companies put on Dr not to order expensive test. They are always looking to save money.
    thad99 6 Replies
    • October 31, 2010
    • 10:44 PM
    • 0
    Flag this Response
  • For several years I had bouts of strange symptoms. Usually would not last long. Mild tremors, just a little off balance, spells of extreme sleepiness, long list. Usually with rest they would clear up.Went to a doctor when it first began in early 90's and diagnosed with anexity disorder. Over the years the spells got closer together and more severe, started falling, spasms in back, eventually thighs, feet, upper arms, and neck. tremors worsened. 3 years ago, I just fell over, no reason. so went to my dr who referred me to neurologist. 1st diagnosis--MS, mri showed no leisons2nd diagnosis--Parkinsons, spent a year going through different types of meds, none worked for more then a few weeks.Sent to a Movement Disorder specialist3rd diagnosis--parkinsonismHe performed every envasive and painful procedures he could think of. I kept telling him I felt like it all had to do with my muscles, but he just laughed since most are either too rare, or develope in early childhood.I became so frustrated I returned to my primary and told her all that had been going on--for some reason I thought that with all the neurologist I didn't need to go to her again for these problems.boy, am I glad I did. She made me an appt with a neurologist who reconized my symptoms right away and order both lyme test and GAD.Lyme was neg, but my GAD results plus his clinical evaluations diagnosised me with stiff person syndrome. He had seen one other case before, and that was what made him suspcious. Now on the right medications, I am doing much better. still some good days, but bad days are less often and less severe. though i do know this is progressive and so am just enjoying the good days to the fullest right now.My new Neurologist told me persons with stiff person syndrome are usually misdiagnosed for years with:MSParkinsonsFibromygaliaanexity disordersbefore anyone actually runs the right test. It is considered so rare that most dr.s never order the GAD test.There is some question also, as to is it really as rare as thought or just that so many live mis-diagnosed? I am now trying to find others for an online support group.hi sad to hear your story, but i do know how frustrating and draining it is of what you went through to get your diganosis i am now currently going through the same thing i was diag with parkinsons and my god thats where it all started i was 43 when i was told that but i wasnt happy with that as i still didnt think it was right so i am now on my third nuero and sadly enough i have finally got an answer i have been diagnoised with cordico basil degeneration i knew that my body was different as the pain is so horrible but at least i know now i have been told i am the youngest person in the world with this illness but at least with me fighting with the doctors i knew something else was wrong any way i say go with your intuition and you will get it right i hope you are doing ok wendy
    Anonymous 42789 Replies
    • November 21, 2010
    • 01:56 PM
    • 0
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  • That is so upsetting. It is so upsetting that people have to go though problems like this. I think some of it is because Dr's are in such a hurry to see as many people as they can they sometimes just go with the safe call. The other thing that can contribute to this is presser insurance companies put on Dr not to order expensive test. They are always looking to save money.Doctors are thought the "horse vs zebra" way to diagnosis. they look for most common (horses) causes first, though way to many don't go beyond that. Then the uncommon (zebras), even then so many other autoimmune disorders over lap with symptoms it can still be very difficult to diagnosis. It is usually a trial and error method, ruling out other things as they go along. At least if they are good doctors. Too many have what I call the 'horse syndrome', refuse to believe a patient could have a rare 'zebra' problem. But you are also right about HMO's esp having control over what test can be ran, the order Dr's must grow through before moving on to next in line 'disease' that match symptoms. Hospitals make big money off of this, and insurance companies keep a lot of people with chronic illness from being diagnosed and treated which saves them money.I know that as HMO's grew to be the primary type of health insurance, PPO's left being to expensive for most people, many doctors left medicine.
    texasannie 11 Replies
    • December 5, 2010
    • 06:35 PM
    • 0
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  • hi sad to hear your story, but i do know how frustrating and draining it is of what you went through to get your diganosis i am now currently going through the same thing i was diag with parkinsons and my god thats where it all started i was 43 when i was told that but i wasnt happy with that as i still didnt think it was right so i am now on my third nuero and sadly enough i have finally got an answer i have been diagnoised with cordico basil degeneration i knew that my body was different as the pain is so horrible but at least i know now i have been told i am the youngest person in the world with this illness but at least with me fighting with the doctors i knew something else was wrong any way i say go with your intuition and you will get it right i hope you are doing ok wendyStill here and doing ok. Good days and bad days but that can be said with most problems. I am so sorry to hear about your diagnosis. And don't let anyone tell you the progression, because much of it does depend on you as well as many other factors. You are so right, listen to your body and intuition. They will tell you much more then any doctor can and even help you sort out what works best for you vs what the usual treatments are.I still get people telling me I am misdiagnosed, but I know what I have, I know what my body can take, and I know I have much more control over the progression. It's like, when you finally get that correct diagnosis you know it. Deep down in your gut you know. Can't explain but sounds like you would understand that feeling. I have met so many now with SPS that are on many meds, getting many treatments, yet have more problems then I do. I am still only on high dose Valium for spasms, beyond that I listen to my body. I have never been one for a lot of medications, esp having had been an ER nurse for so long. Have seen the side effects on other organs from pain meds, steroids, etc. I made an informed decision to limit my meds only to the one that controls spasms. My doctor tells me not to be a martyr, but I am only saving my other organs for later use ;)I have learned what to avoid, how far I can push myself, etc... I am one of few who hasn't had broken bones from spasms yet, and only hospitalization was for aspiration pneumonia 3yrs ago. I have learned when to tell if my swallowing techniques will work and when to just spit out, rest, then have no problems. How to avoid majority of falls. And situations which increase my symptoms and avoid. Almost everything I have learned has been through listening to my body, keeping track of increased symptoms, and intuition. SPS, as most things, vary from person to person. Some respond good to one thing, others do not. So along with listening to body; Lots of medical research on my own, along with exchanging experiences with about 200 other SPS folks from here to UK to Australia, all have taught me much more then even my specialist. So you are very wise giving advice to listen to your intuition and body. I wish you well my friend.
    texasannie 11 Replies
    • December 5, 2010
    • 07:08 PM
    • 0
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