Discussions By Condition: Nerve conditions

doctors have no idea

Posted In: Nerve conditions 9 Replies
  • Posted By: prettifulchance
  • May 10, 2009
  • 07:35 PM

i'm 17 years old now, and ever since i was about 12 i have had a progression of neurological symptoms. it started out as this weird feeling in one hand - i just felt like it was touching something, but it wasn't. ever since then it has changed into so many symptoms (just gets worse and worse as time goes on) i don't even know where to start.

when i touch things on one part of my body i can feel it in another part, always the same every time. i 'feel things that arent there' now in other parts of my body like my other hand, feet, and head.

i have a ton of visual disturbances now, including a bunch of floaters. i dont even know if i can describe it but one thing is -- you know how when you see a camera flash, you see the light everywhere for a while? well, that kind of happens to me with everything now, i see imprits of what i was just looking at all the time. now at night i can't see what is directly in front of my eyes, like bad night vision (i think this symptom is related but i'm not sure)

also there is a constant ringing in my ears.

recently i have started to become very confused at times, for example if i imagine something, i think it is real for a second. i think this has to do with all of the other sympotms but i'm not sure.

it has made me so depressed and worried when the next symptom will appear. all symptoms occur 24 hours a day, 7 days a week. i went to a chiropractor which didn't help one iota. i went to a neurologist and i had an MRI done of my brain and neck and it was normal, i was put on seizure meds for a while which did nothing. :( i am so scared that i will go crazy and not be able to live a normal life, if anyone knows anything about this please tell me.

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9 Replies:

  • Hello there, I'm also young like you, 18 yrs old, and I as well have an undiagnosed neurological problem like you. I've gone through 4 years now of chronic pain in my leg, since i was in the 9th grade and have had to drop out of school... So I think I know what kind of boat your'e in. I've went to over 20 specialists and about 80 doctors :/.I would get a second MRI from a different doctor, to be sure and to get a second set of eyes on you, make sure the MRI is an enclosed one, not an open one. I would do some research on MS, Multiple Sclorosis, some of your symtoms sound like it possibly could be MS. I would also bring this up to the doctor and see what he thinks about it. Also you should ask him to do a Nerve Conductivity Test (EMG), it's painful, but may show some problems with your reaction time to nerves. It is often a pretty conclusive test.You should probably try a different hospital and a different doctor. Ask these doctors you see if they have any reccomendations as to who or what kind of specialist you should go and see.If you haven't had blood work, you should.If an MRI is the only test you've went through then don't panick, because there are plenty of tests out there to help you find out what you have wrong. Also pay attention to what your patterns in everyday life are, anything unusual, bring up to a doctor. Be sure that you arn't possibly causing this problem by any of your actions. Don't be scared :), you won't go crazy, if I can go through 4 years of constant pain you can get through this.Stress and depression will only make this worse, so relax :) (trust me) Is there any pain involved? Twistedben
    Twistedben 5 Replies Flag this Response
  • Thank you SO much for responding.Yes, the MRI was enclosed. Is the EMG where they shock you? Because they did a test where they shocked my arm (very painful) and found nothing. There is no pain involved thankfully.I really hope everything works out with you too. <3 It is good to talk to someone else with 'weird' problems becuase I haven't talked to anyone until now besides doctors and I feel like the only one! The neurologist acted completely baffled, like he'd never heard of anything like it before. Hopefully I can go to the doctors again.
    prettifulchance 5 Replies Flag this Response
  • Sound wierd, but have you thought of a rare autoimmune disease? I had similair symptoms such as yourself, I missed half a yr. of school. Nah, I couldn't walk...I had a spinal tap, EMG, and was admitted into the hospital. But I recall watching a show about your symptoms....Um, I cannot remember. But do you get feelings like your getting shocked? It could be a rare rare rare disease I read about. MAYBE, Moya Moya Disease. You only have a few symptoms. "moya Moya' is Japanese for PUFF OF SMOKE. Only 1 in a million people get it, literally. That is the reason why doctors may not know.
    coatnayy 2 Replies Flag this Response
  • No, I do not get feelings like I am getting shocked.It is possible that I have MS or Moya Moya, but it doesn't really seem like I do. I don't have painful 'attacks' like MS (symptoms occur all the time) or strokes like Moya Moya. But I am not going to rule them out :confused: Thanks for responding!
    prettifulchance 5 Replies Flag this Response
  • Prettiful,Dont be discouraged by the doctor who gawks with his mouth wide open at you, I've gotten used to it :P!The EMG is where they shock you, but they usually do it a lot of times, the point is to like measure your reaction or something, there's usually a moniter measuring it too.Floaters are kind of normal, but it could easily be a symptom, I woke up one day and have had a floater in my left eye every since...Like iv'e said I would ask your neurologist if he recommends another doctor or a diagnostic test that you coulld go to or do. It's very important, especially with rare cases like yours and mine, to see multiple doctors for different opinions.Since there is no pain involved, it'll be harder to locate whats ailing you, but i'm sure they'll find out. You arn't alone :), just don't give up. Twistedben
    Twistedben 5 Replies Flag this Response
  • thank you so much ben.update: i asked my dad if i could go see the neurologist again and he said yes. but he said they stopped my appointments last time because the neurologist said there was nothing they could do.the thing is i really can't live with it for forever. it is making me suicidal ~again~ :( i get new symptoms all the time. today's lovely new symptom is seeing trails after things move (remember all symptoms occur 24/7 i will never get rid of this unless the doctor finds a problem)
    prettifulchance 5 Replies Flag this Response
  • No problem Prettiful, Don't let it make you suicidal or at all depressed. Remember for 4 years I've been laid up in pain, lost all my friends and was pretty much shut out from the world. You cannot let that happen to you! If the anxiety and stress of it is getting to you, maybe you should talk to your family doctor about the anxiety/depression. Xanax is a good short term stress-reliever, I take it and it helps me sleep and get through the day, maybe you should ask for it or something to that effect. I wish you all the luck, and dont let it ruin your life, Ben
    Twistedben 5 Replies Flag this Response
  • well i went to the neurologist, the same one as a few years ago.he says he doesn't think he can find out what is wrong with me, and if he can, it's probably unfixable. he's going to do an mri on my neck which is exactly what he did a few years ago (and it came back normal). He also said to get bloodwork done to see if my thyroid is normal... :confused:i hope you are feeling okay ben!
    prettifulchance 5 Replies Flag this Response
  • sorry for double posting but i don't know how to edit my post. anyway, the thyroid test came back normal, but i have very low levels of vitamin D. i will be taking vitamin D supplements for the next 3 months, and because they somehow think this is the cause of my problem, i won't be seeing them until then. no mri or anything.
    prettifulchance 5 Replies Flag this Response
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