No one can find whats wrong with me. Does someone have any ideas?

Your symptoms sound very much like mine. All tests showed up nothing, which is why it took Neurologists nearly 2 years to diagnose me.

Now, the problem - Dystonia or maybe a Functional Episode, or could be both.

Dystonia, does come in various forms - and pinpointing which one can take quite awhile. When I was diagnosed with it, I was only the 7th known case in the UK. While Dystonia on its own can be just one contributing factor, sometimes there is other under-lying issues. Dystonia is not that well known by doctors, some Neurologists don't even know the symptoms, because there's so many variations. I started in my early 20's with Focal Segmental Dystonia, I was re-diagnosed later with Torticollis Dystonia and then last year with Generalized Dystonia, basically it effects all limbs.

Now, I said it could be, I'm not a Neurologist but your symptoms sound similar - now, if it is not Dystonia you maybe looking at a form of "Functional Episode" - this is even more difficult to diagnose than Dystonia and all variations.

There are around 28 variations and your Neurologist would need to know which one you have by doing a special series of tests. I only know of one Consultant Neurologist here in the UK, that specialises in the many forms. Because there is so many variations, and depending on where you live, you would probably need to ask your Neurologist to contact Dr Jon Stone, Consultant Neurologist - he does have his own website which he updates regularly. I would suggest you point this website out to your own Doctor, and your own Consultant Neurologist.

You will notice on the first page that he has listed the variations and symptoms of Functional Episodes, he does go in to depth with all that he has listed. Many Consultant Neurologist know Dr Jon Stone in the UK, but do not know how he specializes in so many types of Functional Episodes. Some of our Neurologists in the UK, do ask patients to look at Jon's website regarding his detailed reports. Never read anything on the internet and assume it is gospel - it's so easily done, and normally you will find you are reading things in to what is actually wrong with you.

So, this post does not become moderated - the easiest way to get to his website is by Googling the keywords "functional episodes" now look for the following details of Dr Jon Stones website.

Functional Weakness http://www.neurosymptoms.org/#/functional-weakness/4533052114

Self Help website for patients with functional symptoms / conversion disorder / dissociative symptoms including functional weakness, non-epileptic attacks, ...

I hope this helps you, and remember many Consultant Neurologists do not specialize in this field of Neurology - I was lucky, even though it took nearly 2 years to diagnose, I was being seen by Dr David Marsden in London - he has since passed away.

I hope that information helps you, or at least puts your Neurologists in the right direction to help you.

Regards,

Les.

So sorry to hear that you are going through all of this, esp at your young age.  I imagine that you can't get away from it, based upon what you wrote.  Ok...please don't hate me for this (and no, I'm not a doctor) but everything that you are experiencing could in fact be due to severe anxiety.  I'm not in ANY way trying to minimize what you are going through...it's sheer hell...I know as I suffer with severe anxiety,too.  I'm sure that you are thinking that there is NO WAY anxiety could do all of these crazy things, but in fact it can.  MANY people end up in the ER after having panic attacks (including me) and if they had told me at the time that my symptoms were "in my head" I  would've told them that they were INSANE.  Please, please consider this as a possibilty.  Look up symptoms of anxiety online and you'll see that they are a mile long.  As I said, please don't think that I am minimizing your symptoms -- anxiety can make you VERY ill.  All of the issues that you are having are actually common signs of panic/anxiety.  I know that you may be mad at this post, but just give it some consideration.  I'd be happy to "talk" to you about all of the symptoms as well as ways to cope with it.  Otherwise, I wish you all the best!

M-

At least you can take some comfort in the fact the tests have all been normal so far. Of course I can't say for certain what it is as you know your body better than anyone else, but on the off chance it is anxiety, it's a viscious cycle.  You notice things are off and become hyper sensitive to your body and thoughts, which makes the anxiety worse, which makes the symptoms worse, so again the anxiety gets worse still...awful, rotten feeling! 

I completely understand how this is making you anxious though, as I'm sure it would make anybody feel that way.  If you don't mind me asking, is there any chance you may be wrestlng depression, too? That can also manifest in crazy ways and if this is the case, it's an illness that can be treated.. (I'm not saying it's that, but just in case...)  Do you have a good pcp? Would they be of any help? In any case, hang in there....All the best, M-