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

Brain and nerves
1

Hello!

Since this June I have been to so many places from my physician’s office to the ER and everywhere in-between. Nobody can find whats wrong with me. I’ve had two neurologists give up on me and one who (after running a bunch of tests) say I have anxious tendencies witch is bull s***. I had every test possible ran on me and they all came back normal. Actually on paper I’m as healthy as can be. Thats the problem, all my test results are perfect so people think there’s nothing wrong. It’s hard to explain what I feel like. My thoughts feel foggy and blocked, I’ve become very forgetful and academically I’m struggling. That is only the mental portion unfortunately. Physically I have muscle cramps, fatigue/drowsy-ness, disorientation, trembling, tingling, and clumsy-ness. I’ve had a spinal tap, loads of blood tests, two EEGs, MRIs, and been evaluated by six different doctors. Every blood test you could think of has been ran on me. Including heavy metals, vitamin b-12, Lymes, lupus, hormones, blood sugar… there are loads more but I can’t remember them all. I’m worried most about the cognitive aspect of my problem. Its very debilitating. Some days are better than others, and some are worse. Today was one of the bad days. I can’t  stay focused or have clear thoughts. When I talk I don’t make much sense. I say words that don’t fit into context, have a very hard time finding words, and as a result, can’t keep up a conversation very well. I try my hardest to overcome these problems but I don’t think its a matter of how much effort I put forth. Some days I just can not think straight. I even have problems understanding what people say to me. I understand the words, but the meaning of what’s said just doesn’t get through. Like I said, some days are better than others. The memory isn’t isolated to only short-term or the forming of new memories. I have a hard time remembering things that happened long ago as well as what happened five minutes ago. The things I remember are fragments and very inconsistent. I was stating to think that my problem could be low magnesium or something like that witch was overlooked. From my understanding of a mangesium deficiency. It takes a long time for you to become deficient. This makes sense because this problem didn’t just stat overnight, I’ve actually been having this problem since February. I’ve been blowing off the symptoms as lack of sleep or just being tired but it built up to the point that I realized something was truly wrong. So magnesium might make sense, maybe. I’m just guessing at this point though.

So, what do you think? If you have any ideas what the problem could be please let me know. As I said before, I’ve had my heavy metals, Lymes, hormones, vitamin b-12, lupus, csf (spinal tap), and blood sugar checked. I’ve also had a complete metabolic panel ran, a complete hormonal panel, and complete nutritional panel checked. I think an allergist might be a good idea but I’m not sure. I guess its worth a shot.

 Here’s some info about me. I’m 17 years old, male, 5’9’’ and weigh 128LBs. The problem is constant 24/7, never goes away.

Thanks you’re reply in advance.

2

I am not a doctor but has Dystonia ever been mentioned ?

3

I'm so sorry to hear of this, especially because you are young.. Personally I suspect stress ( unrecognised by you). You are probably u der pressure at school ( final year?), starting college, or first job. Or there could be worries or pressures coming from home or friends. Have a real think about this. I have had similar but not such extreme symptoms as this which brought me out in a full body rash which has been very hard to shake off accompanied by brain fog. It was only when a nutritionist asked me some questions did I realise I was under stress and didn't realise it!! Truly. I had very bad brain fog too. t is possible you aren't aware of the stresses you are experiencing - family tension, a death etc etc. think - are you happy? Very best wishes. 

4

Hi Spacebar,

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.

5

Hi have you been tested for thyroid? And autoimmune conditions? I'm hypothyroid and autoimmune and get a lot of brain fog/forgetfulness, and the fatigue is very debilitating. Get them to do all thyroid and auto antibody blood tests. Get them to check ferritin, vitB, vitD as well. If I were you I'd Google all your symptoms and see what it throws up. Good luck.

6

Hi Spacebar!

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-

7

Sorry for the late reply.

No it was never mentioned

8

Sorry for the late reply.

Yep, I've been tested for autoimmune deficientcies, hyperthyroidism, and had my vitamin levels checked. I've also tried googling my symptoms so many times it's crazy xD. You did mention ferritin though... I'm not entirely sure that I had that one tested. I'll have to look into that. Thanks

9

Me again, spacebar. I'm sure you don't want to hear this, but please go to the website run by anxiety centre.(just google that) Scroll down to the bottom to find the extensive list if anxiety symptoms...it's worth a look, right? Perhaps enter your symptoms into an anxiety forum and see what comes back? At the very least, it may rule things in or out and then you won't get anymore bothersome posts like this one (sorry -- I truly do mean to be helpful) All the best!

10

I'm not avoiding you're comment and I'm not mad. You're trying to help and I appreciate that cheesygrin. I was trying to reply to you're comment last night but it got to late. I did for a while start to think it was anxiety. This was before I went to a doctor. I thought it could be generalized anxiety disorder since I don't have any particular fears or worry. Now I'm not entirely denying anxiety, but I do think there is an underlying cause. I had no stress before this started happining and like I said before, this was something that gradually got worse over time. I did look around anxiety forums but I felt like I couldn't relate to some of the more common symptoms.

The main reason I didn't believe the doctors diagnosis was because of the way the neurologist went about diagnosing me. Before the neuro didn't say a thing about anxiety, but after all the testing came back normal only then was it brought up. There was a quick 10 minute conversation witch wasn't all that involved. Then the diagnosis saying I had anxious tendencies. I felt like the neuro only said that because a diagnosis couldn't be made so anxiety was a fallback option. She then insisted that I go see a psychoneurologist. The one I was reffered to worked out of their home and charged a tremendous fee that my family can't afford and the insurance was of no help. Besides, I think its normal for me to have atleast some worry at this point since its been a good 4 months and I'm still no closer to finding the cause.

I was starting to think about going to a psychiatrist but I want to be certin there isn't something that was overlooked.

Thanks for you're repy.

11

Oh goodness, don't worry about not responding. You are 17 and have a million more important things to do!  I totally understand your frustration with the neurologist and how they dealt with you.  I'm twice your age and still marvel at the fact that many doctors simply treat us as one of the masses and you leave feeling like they never really listened to you.  

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-

12

I'm not entirely sure about depression. I don't feel depressed but I'm not exactly happy. How would I know for sure? The same goes for anxiety. Is there a way to get a definate answer? As for my pcp, I do have one but I don't like her verry much (Sorry for being blunt :p). Say if all of this was caused by anxiety or depression. How would it be treated? Is there something I could do on my own to help with the symptoms?  Would the symptoms eventualy ease up on their own? Again thanks for the reply.

13

Well, I'll start by saying that anxiety and depression VERY often go hand in hand and can certainly over lap.  There is a wealth of info about these online -- just google symptoms of anxiety and depression and hopefully you'll find a lot of answers.  Depression is a tricky one, because some people think that it means you cry or are very sad all of the time. This is possible but certainly not the case for many.  Here are some of depression's main symptoms:

Losing interest in activities/friends that you usually enjoy

Feeling worthless, hopeless or pessimistic

Persisitent sad or anxious mood

Decresed energy, fatigue, feeling "slowed down"

Insomnia or oversleeping

Low appetite and weight loss or overeating and weight gain

Suicidal thoughts

Restlessness  and irritabilty

"foggy" thinking, clouded brain, forgetfulness, inability to concentrate

Persistent physical symptoms that don't respond to treatment or have no known cause (you feel pain far more acutely when you are depressed)

These are just the main ones, but there are MANY more. Depression is an illness (a VERY common one) caused by the chemical interactions in the brain not working properly.  There are MANY drugs that treat depression (and anxiety by the way) but I think that therapy or counselling is the best first step.  There are also tons of books on the subject, online resources etc. The first step to healing anxiety is accepting that that is what you have. At that point, when you feel "wrong" or have strange symptoms you'll know "hey, it's just my anxiety doing this. I'm really ok." and that will actually help ease them and the cycle will go in reverse.  I've heard that meditation, yoga or even walking can work magic. Whatever relaxes you. There's an online resource called the "calm clinic" that has a lot of info, although mostly about dealing with anxiety...might be worth a look.

Have you got friends you can talk to? A school counsellor or teacher? Don't be afraid to reach out -- I'll bet at least one of your friends is battling this, too.  Just keep that faith that it will get better!! And forgive me for saying this (I'm a mother and can't help it!) but obviously stay away from alcohol and drugs as this can make things SO much worse.

I hope this helps? Please keep me posted and let me know how you are doing...You've got this! All the best M-

14

Okay so a psychiatrist is a good idea? I'll talk to my parents about finding one. I have another question about anxiety and depression. A few nights I had vertigo like symptoms. Not dizziness, actual vertigo like the room was spinning and my eyes where moving back and forth. This was right before I was ready for bed. When I laid down in bed it got worse then started to go away. Could anxiety cause this to happen? It worries me cause for a few days my symptoms seemed to ease up a bit and now there worse then before. Something like this has happened before. During summer my family went on vacation. I started having dizzy spells when I moved my head a certain way and felt light headed like I was seeing stars. I also had a lingering headache and felt tired like I could never fully catch up. The dizziness is gone now but I still feel just terrible. It frustrates me so much cause I can't find the cause/trigger (if there is one).

As for someone to talk to, I have one close friend who has always been there for me. I feel funny telling him about my symptoms now because I've talked so much about them. I feel like I'm just bothering him at this point.

Oh and there is no need in telling me not to do drugs or drink alcohol xD. Do you think I'm crazy? I don't need any more problems lol.

So could anxiety/depression cause vertigo? I'll keep you posted and really, thank you!

 

15

Yes I'm afraid so. I had similar symptoms many years ago - when I was walking down a street the buildings seemed to move in on me and topple; and when I laid down similar things in your experience happened. I was in a high state of anxiety. I didn't know what I was going to do with my life ( I'd just finished univ) and id just got a job in a city - I was hating city life and job... As I said in my first post to you - take a hard look at what is causing this inner stress. This will all pass but you have to address the cause of your anxiety first. You'll get there smile

16

As Dorothy said, yes, vertigo is certainly a symptom of anxiety. It sounds like you actually had a panic attack. This is when your symptoms get insanely overwhelming and so intense that many people feel they must be dying or at least very, very ill. (ALOT of them will head to ER for this reason)  THey usually last for about 20-30 mins, but I've had back to back ones, so at times they can go on for hours (not fun.) The best way to cope with them is to know it's a panic attack and t change you're breathing. When you hyperventilate (and you may not know you are) it often triggers a panic attack. It's important to "belly breathe" (you can look this up online) It will help!  The fact that these symptoms only lasted for a spell is a good sign that it was an attack.  

Yes a psychiatrist or psychologist would be a good idea, I think. Or you could start by buying books (or going to the library) on self help books for anxiety and depression. There are many of these out there!! Don't be afraid to talk to your friend -- that's what friends are for!

There is of course medication for anxiety and depression, but explore other routes first. As Dorothy said, are you worried about graduation? College? Relationships? All totally to be expected by the way. PLease google anxiety centre (spelled the UK way) and scroll down to read all of the symptoms -- it will put your mind at ease!

Just know that you are not alone in this and that it will get better! And keep us posted! M-

17

PS. I was giving your situation some thought and you may just want to start with a therapist? Might be a lot cheaper? Many of them are well versed in treating anxiety and/or depression.  Medication is certainly there if you need it, but I think it best to consider it a last resort. Good luck!

18

One more thing (sorry I keep asking questions) xD. Could anxiety trigger depression? I looked through the syptoms on anxiety centre. I have like 5/18 of the symptoms for a panic attack. You also said that a panic attack only lasts for 20-30 minutes or maybe up to hours. It's been days since my problem picked up again. I kinda can retate to more of the symptoms of depression like:

•Losing interest in activities/friends that you usually enjoy

•Decresed energy, fatigue, feeling "slowed down"

•Insomnia or oversleeping

•Low appetite and weight loss

•Restlessness  and irritabilty

•"foggy" thinking, clouded brain, forgetfulness, inability to concentrate

If I had an anxiety attack could that have triggered another wave of depression?

19

How long did the vertigo syomptoms last for you?

I've tried to find the cause but I just can't. There really is no reason for me to be stressed or anxious. Could I have like generalized anxiety or something with no underlying cause? I'm not trying to say I don't believe you. I just can't find m̲y̲ reason for being stressed.

20

No problem about the questions...happy to help! Anxiety and depression are so closely related that they really do overlap in many cases.  You can be in a constant state of anxiety 24hrs a day for weeks/months/ even years in some cases (and there are many ways to make sure this doesn't happen so not to worry!) That said though, anxiety can wax and wane throughout a day...or ease for weeks/ months and then return.  Panic attacks are triggered by those anxious states and can occur out of the blue at any time (they can even wake you up!) Not everyone has panic attacks, but I think most people with anxiety do. Depression is a more constant state. The brain and body literally become "depressed". You may not feel it acutely all the time, but clinical depression is considered if you've felt that way more or less for more than 2 months.  So does one cause the other? It certainly can. As I said, it's common to experience both together.  Just think about it, you're anxious something is terribly wrong with you...are you very sick? Dying? Losing your mind? This in turn causes depression and you slowly begin to lose yourself in it and stop enjoying things that you usually would. Along with depression are physical symptoms, which in turn make the anxiety worse, which worsens the depression. It's a viscious cycle, but it can be broken!!  

The symptoms you saw at the anxiety centre are only a few...scroll to the bottom of that page and you will find about 100 more.  Hopefully if you see your symptoms there, you will relax a bit more! Tough, I know.

This will get better and there is help for you! Do some soul searching and try to figure out your biggest stressors right now. If you can help to deal with that the anxiety should wane.  If it's Generalized Anxiety Disorder (which I have) you probably worry about everything and this is where therapy and maybe meds can help.  And don't worry about the questions!

Happy to help! M-