Have doctors ever thrown your diagnosis around?

[StrongerThanEpilepsy]

Hello, I'm new here.
I was wondering have any of you ever doubted your diagnosis or if doctors have thrown your diagnosis around.
Here's a fun story:
I experience jerking on the right side of my body in the arms, shoulders, and neck that makes my head turn. The neck/head jerks are sometimes so powerful that my neck and head will hurt afterwards, and if its in my shoulder/arm, i usually drop/throw whatever I'm holding. A lot of times they wake me up or I wake up to them but they can happen any time of the day, usually if I'm extremely tired or if it's right before my period.
A little history:
I went to the neuro a little over 2 years ago and she(neuro #1) said I was stressed and needed a psychiatrist because my MRI and EEG was normal but she referred us(my mom and I) to the neuro (neuro #2) who trained her for a second opinion.
We went to him(neuro #2), and after reading my file, he agreed with her and said that I probably have winter depression but to come back in case I'm still having headaches.
So my mom took me (I'm 19 by the way) to the psychiatrist and of course the psychiatrist medicated me, but the jerks didn't go away, but I sure was the least stressed person about the senior paper haha.
I went back to neuro #2 because these headaches were migraines and he put me on Topamax 50mg and said that this should help my head and he hopes it helps my jerks. He said it was an "involuntary movement disorder" and that there are too many movement disorders to figure out what it is. It helped my head quite a bit but only helped the movements a little bit.
This neuro wasn't helping and we stopped going when I called him for a disability letter for my new college I was applying to so they can be notified of my condition and the nurse called back and said that "It says in your file that the tics are caused by stress and maybe hormones, it's not a disability because it flares up, it doesn't affect your life." No, I never got the letter.
Tired of the psychiatric drug, I withdrew it a year later.
So we finally saw a new neurologist (neuro #3), and she said we have to start from scratch with a new MRI and a 24hr EEG and the EEG needs to be around my period. She said if the EEG is normal then I need to do a v-EEG. She's leaning towards epilepsy but is waiting on the tests.
What if I am just stressed?! Now I'm doubting myself. I know it sounds silly.. I guess I'm just scared that I'll go through the same thing again and will feel silly for not realizing my issue earlier. I did have a head injury not too long before the first "seizure" (not even sure what to call these anymore) and that's the only reason I can think of me having epilepsy. Seems like everyone has something different to say. It's getting tedious.
Do any of you have any experiences with doctors throwing your diagnosis back and forth? Have you ever doubted your diagnosis?

 

[acshuman]

Testing For E

I know people who have had these tests that you speak of. One of the things that many of them found was that when a CAT scan or any type of EEG was done, they may have been really stressed out, but their EEGs would show everything to be normal.
Sometimes the source a person may have for jerks like yours or for Epileptic Seizures may be so deep in their brain that the little pins that they stick in your skull's skin may never sense them, and their EEG would read as normal.
When you are undergoing these tests you may be asked to stop taking your meds so that the EEG will get a view of your brainwaves when your brain is NOT being medicated.:twocents:

ACsHuman:hugs:

 

[masterjen]

Hi, StrongerThanEpilepsy;

While your symptoms sound somewhat like myoclonic seizures, they also sound a little like cervical dystonia aka spasmodic torticollis. This is something that can be related to having had (but doesn't have to) a head or neck injury.

I hope one of your neurologists is an epilepsy specialist (epileptologist). There are also neurologists who specialize in movement disorders, and you may want to be asked to referred to one.

 

[Frink]

Hi StrongerThanEpilepsy,

Yes.
Over the years I have had DR's say I was faking, a malingerer, trying to get workers comp ( but doc it did not happen at work and I did not ask about workers comp), trying to set up the Dr for a lawsuit, conversion disorder, nutrient/ mineral deficiency, pinched nerve, panic attacks, panic/ anxiety disorder.

Then after 27 years of weirdness, deja vu, memory loss, strange smells and tastes, and stupid, stupid DR's I meet a neurologist who says "sounds like a classic case of TLE", EEG, EEG, both normal, start meds none help, most make seizures worse or have awful side effects.

Go to epileptologist, MRI normal, 72 hour ambulatory VEEG shows interictal discharges in right temporal lobe, diagnosis confirmed.

Sometimes it can take a while to find a good Dr and get a proper diagnosis.

 

[Porkette]

Hi StrongerThanEpilepsy,

Yes, my first Dr. did feel I was having seizure but then they thought I was faking my seizurs but what they didn't realize is damage was so deep in my brain that not a single test showed damage on both the right, left and frontal lobes.
I then started seeing an Epileptologist like Frink mentioned and it changed my life for the better. You need to set up an appt. with an Epileptologist at an Epilepsy Center there you will find a team of Drs. working together. Also if you need to see a neuropsychatrist they will do testing on you to see what the problem is.
Hormones changing each month can often trigger seizures for many people. Keep track of any seizures by writing them down on a calendar be sure to write down what time the seizure happened along with a description of the seizure, by doing this the Dr. may be able to see a pattern in your seizures.
Before I started to have seizures I had wicked migraine headaches and that in turn led to seizures. Try taking vitamin B12 1000 mcg. once a day and see if that helps you. I know it's been a big help to me. I wish you only the best of luck and May God Bless You!

Sue

 

[Belinda5000]

Hi stronger than epilepsy,

my neuro has sent me to quite a number of specialist they don't read my chart they get all the info from me; and they don't figure out I can't take certain drugs when I refuse them because I knew what would happen.I've been with same doc 25 years and I'm just not controllable.

I have beat my epilepsy I won't let it keep me at home if I seize while I'm at out that's life.
I'm refractory and I've had epilepsy since I was two and if someone can't seeing me seize that's there problem.

 

[seagull]

Has anyone mention dystonia not sure I spelt it right..Normall egg is not conclusive test for e,it can prove you got but certainly no prove not got it..Mri shows hot spots I would not thought it could show definite e.
They should take you in for three days constant eeg.
I know there nuro/psychiatrist,not sure I be to thrilled seeing one but I imagine they give tactics.If going to one could cure memory headaches I would run to one but it won't and I know every tactic as I guess others on here do aswel

 

[txtiger]

StrongerThanEpilepsy, I hope that the new neurologist will find a cause for your problems. Sounds like they're going in the right direction with the MRI, EEG, and possibly video EEG. It can take a while to get a correct diagnosis.

Seagull, when I was undergoing pre-surgical testing, a neuropsychologist did my neuropsychological evaluation. That did involve a measure of attitude or identity, something like that. A lot of the testing, though involved cognitive functioning, sort of like IQ testing. Showing you patterened cubes in different configurations, taking one away, and asking you to identify the positioning of the missing cube, etc.

He, or actually I think it was a graduate student or postdoc fellow, did the testing, he evaluated the results, and was on my surgical review committee, but I was never actually a "patient" of his. Others can comment, but I imagine their experiences might have been similar.

 

[Nakamova]

Hi StrongerThanEpilepsy, welcome to CWE!

Neurological disorders CAN sometimes be tough to diagnose, but that's no excuse for the treatment you got from neuros 1 & 2. They should have known that a positive EEG can help rule in a diagnosis of epilepsy, but a negative one can't rule one out. I hope you get more information and help from neuro #3. It sounds like she has the right idea.

BTW, seizures that are triggered by fluctuations in estrogen and progesterone are called catamenial epilepsy. You can read a bit more about that here https://en.wikipedia.org/wiki/Catamenial_epilepsy and you will find CWE threads that discuss it here: http://www.coping-with-epilepsy.com/forums/tags/catamenial epilepsy.html

txtiger, I had a a neuropsych evaluation similar to the one you describe. The evaluator was a neuropsychiatrist who administered the tests and also followed up with me later to go over the results. The tesing can be useful in several ways:
1. To get a baseline read on cognitive function.
2. To identify problem areas, if any.
3. To pinpoint causes of any problems. For example are an individual's short-term memory issues caused by seizures, depression, or medication? All of the above, None of the above? etc.
4. To recommend next steps -- tips and workarounds, as well as therapeutic approaches. The neuropsych does not usually provide therapy, but they might provide a referral to a therapist if that seems appropriate.

 

[seagull]

She got crap GP.Know what that like just had almighty row with Doc telling me not God I pointed out my daughter not want letter from God just GP
Doc may not like it but patients often know more just GP got scrip pad.Medicene not quiet exact scientist this moment in time sometimes gentle push

 

[skyfire322]

I've had three neurologists, and all three have given me different diagnoses.

The first one was my family neurologist in my hometown who treated my sister for E. After some minor testing, he concluded it was idiopathic generalized epilepsy, although my first seizure didn't occur until I was 15.

When I moved to Virginia, the quack (he was quite a jerk) concluded it was psychogenic. He thought I was faking them, even though I showed some epileptic activity on every single EEG. That's when I chose to get a second opinion.

I went to a neurologist at UPMC in Pittsburgh, and had a five day in-patient EEG. After seeing the results, he agreed with the first neurologist and called it idiopathic generalized.

 

[StrongerThanEpilepsy]

*I apologize for not quoting but I can't quote multiple people from my tablet and I don't want to clog up this thread by quoting separately.*

acshuman,
Hello, and that's interesting. Thanks for sharing. And yeah, my neuro said that if we have to do the V-EEG then I have to stop taking my medication. The thought of doing that scares me a little bit.

masterjen,
Hello and thanks for telling me about*cervical dystonia. I researched it a little bit and it does seem similar. Hmm. And my current neuro specializes in epilepsy, so I'm assuming that makes her an epileptologist? I'll probably go to a movement disorder specialist if my current neuro doesn't figure it out. I've also considered a nutritionist in case I have any unknown low vitamin levels that can cause this.

Frink,
Hello. And 27 years?! That must have been a frustrating situation. Glad you got your diagnosis. Thanks for sharing your story. And I think I have a good doctor, at least I hope. She seems different than the rest. I just hope I don't have a complicated case.

Porkette,
Hello, and that's terrible that your doctor would think you're faking just because of a normal test. And my current neuro specializes in epilepsy so I'm assuming she's an epileptologist? Ironically, my migraines started around the same time as the jerks. I can't help but wonder how are the two connected. And I currently take a multi vitamin that has B vitamins in it. Not sure if it is as effective as taking a separate B vitamin. Haven't seen much of a difference in my health. I hear it really helps though! Also fish oil! Thank you.

Seagull,
Hello, I've research dystonia a little bit and it does seem very similar. And the inpatient EEG would be beneficial but I'm hoping the neuro gets the info and needs from the first EEG so I don't have to spend the night in the hospital.

Belinda5000,
Hello, and I love your attitude. It's not only great, but absolutely necessary. I'm still getting used to not having control of every aspect of my life and I have felt embarrassed quite a bit in the past and have mentally beat myself up about it but I tell myself that I can only control what I can. I can't control people's thoughts either and if they have a problem with it then it's their problem.

Txtiger,
Hello, and I think the new neuro will find the diagnosis, or at least help guide me in the correct direction if she can no longer help.

Nakamova,
Hello and thanks! And I'm just starting to realize that neurological disorders can be difficult to diagnose and some have similarities. I hope I don't have a complicated case. And thanks or the information about catamenial epilepsy, I will read about it.

Skyfire322,
Hello and wow, I can't believe your doctor thought you were faking when your EEGs were abnormal! Glad you got your right diagnosis! Thanks for sharing!