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Avatar universal

5 doctors, no diagnosis

I've recently been diagnosed with a mixture of anxiety and panic disorder. The only part is that I have uncontrollable muscle spasms involving my right neck/shoulder, right arm/hand and right leg. Sometimes my fingers will curl as well (right or left). I've started to write it down whenever i have one...but now it's progressed to now it's too often to count. It could be as many as 10 in an hour or as little as 2 a day. Also the new symptom of my head shaking quickly and violently has come into the picture, where as it just used to me a little twitch of my neck. Hands shaking randomly is also a new syptom (as if I'm shivering).I'm more often cold to the touch now (if that even counts) and my husband says I'm on fire when I'm asleep, I sometimes even turn red. That's IF I can sleep. Sometimes Insomnia can last for 3 days before my mind calms down. When in the hospital I've been recorded to have an extremely low resting bp. Active (awake) bp is low as well, but still in average range. I've been to 5 doctors in 3 states. Everyone has different tests and different answers. Some say its just my anxiety disorder, some say its not that at all. It could be vitamin absorbtion problems, or electrolite imbalances, etc. One doctor tested for neurological irregularities but I think he was having to much fun with his new fancy equipment to really give me a correct answer, which was that he didn't find anything.  Will someone give me some suggestions? I feel like I picked the worst 5 doctors to go to. I just need someone to listen and help give me a straight diagnosis. I feel like i won't be able to control my body one day. I'm a healthy young woman with no family history of this.
6 Responses
Avatar universal
Welcome to the world of Anxiety. By that I mean, once they assume it may be anxiety related they have it fixed in their heads that that is all that it is. It's a cruel world at times. But we can be labelled. Go to the doctor with anything at all and it is the anxiety again. Even when it is not. I have no idea what you suffer from and what is bringing on your condition. But I would suggest a hospital. If that is possible. Once there I would not even mention anxiety. Yes it would mean more tests. But they might look into other areas. Then we can begin to narrow things down a bit. If all tests come back as negative we might have to accept it as anxiety. I assume you are on medication? Love to hear what they put you on. The medication will be a sign to readers of what condition the doctors are assuming. And from there others might have better answers for you. Just stick with us for now. I am sure you will get replies. Loads of them too. Just takes time for people to view posts at times.
Avatar universal
It would be worth going to a neurologist for another opinion.  Some doctors are just mud even in a specialty.
Avatar universal
That's just it. They pull up my files and look "oh well I see you've been diagnosed with anxiety". ...Seriously Doc? They don't even look into the fact that I've been diagnosed and undiagnosed with autism since I was 4. Most doctors I go to say that is completely unrelated. How isn't autism diagnosis a relative factor?  
Also, I've refused medications because no one will give me a diagnosis. If someone wants to put me thru tests to level out the playing field to 3 or 4 possibilities, awesome. But we're not playing the all too common game of "I wonder what will happen to your brain chemistry and nervous system if we put you in this...".  No thank you; no sir.
Oh...and it's awesome when they tell you "We'd love to run this test but... your insurance doesn't cover it... so..... let's try this one instead."  
Avatar universal
Would you have a hospital to recommend? Or a specialist? If I asked my doctors they would just shove me off to a local one or a friend of theirs.
Avatar universal
I know exactly what you are going through because i'm suffering the same thing as you, i feel my violent head shakes are a combination of anxiety, post traumatic stress disorder, agoraphobia and social phobia, overuse of my neck, shoulder and back muscles when i was doing data entry in 1988 to 1990.  I am in the process of having cognitive behavioural therapy, not keen on medication as they made me feel spaced out at times, my physiotherapist has referred me to a pain specialist because when i have panic attacks my body tenses up oh and my breathing is poor and i have this major inability to relax.  What do i do for myself, i accept that i do have it, do yoga 6 days a week, walk the dog 6 days a week, gave up drinking, try and eat good healthy food, do a computer course and just count myself lucky that i'm still alive.
370181 tn?1595629445
Unfortunately when we see a new doctor, we sign all those papers that most of us don't even bother to read. But the ONE thing that is on all of them is the part where we give permission for access to our medical records.
Once the new doc has those in hand and reads that the other docs have labeled you as "anxious" or "anxiety prone" or whatever language they use, it's there in big red letters, and they figure their work is more or less done. It's my belief that at that moment, they stop taking you seriously.
You can refuse access to your records and they must still treat you. As MrGreen has said, don't say a word about your anxiety. Keep that you're little secret until the time is right. Which would be AFTER they have done the proper testing to find out what is causing these bewhildering symptoms. IF, again, as MrGreen says, ALL the tests come back negative for anything organically wrong, THEN would be the time to disclose your anxiety issues. And it may be that you WILL have to accept that it's anxiety causing these unnerving symptoms.
But from what you've written, you're certainly not getting a fair shake in getting this diagnosed.
I'm not sure which kind of doctor would be the best to help you at this point. My first thought was a Neurologist, but perhaps others on here have a better opinion.
I do suggest you begin all over with a new doctor and keep the anxiety issue to yourself IN THE BEGINNING. (Read that part again!) You could also go to an ER at a MAJOR hospital and if they find your symptoms disturbing enough, they may admit you for further testing......but I really don't think that should be your first line choice in seeking help.  
My one negative thought on doing this is that when you see this new doctor, he is going to have to know what medications you're taking. If you ARE taking something for anxiety, it would be very unwise to keep that from him. He must know everything you're taking as it will be crucial for his correct dx of your condition. If you are, say, taking some Xanax, you could tell him/her that these symptoms were causing you some anxiety and that is why you're taking the Xanax. Any doctor should be able to understand that you're fearful of what is happening with your body and not immediately assume it's "simple" anxiety.
I don't like suggesting to anyone that they lie to their doctor, which is a really stupid and possibly dangerous thing to do, but since you are being dismissed by all these doctors, it's time to fight back a little. I DO want to make it clear that I believe you MUST, at some point, tell these docs about any medication you're taking for anxiety................but when this new doctor asks you why you're there to see them, don't let the first thing out of your mouth be "I've been dianosed with anxiety." Might just as well put a big red "A" on your forehead!
I wish you the best of luck and hope you keep us informed of what you find out.
(And you've seen from the previous post that you're not alone!)
I wish you the best of luck.
Peace
Greenlydia
      
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