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Different doctors, different diagnoses and information

Posted , 9 users are following.

dee50000
dee50000

I just had another appointment with my eye-neurologist, and while I really like him, I am getting really frustrated with different doctors giving different diagnoses and prognoses.

He just told me that vestibular nerve damage (neuropathy) is not reversible. Ear doctor said it was. PT says you can retrain your brain to get your balance back. Other neurologist says it's inner ear, not brain. Other PT says it's caused from the BPPV, other ENT doctor says it's not. With so many different possibilities, what am I supposed to do. They pat you on the head and tell you to come back in 3 months. I have read so many articles, I'm feeling like I have to diagnose this on my own. Argghhh, frustrating. Can anyone relate?

MRI did not show anything unusual, which I am thankful for, but did not provide a source of the pproblem either. Now I am thinking maybe I have vestibular migraines, but I'm not sure that's what it is.

I get migraines, hear perfectly, feel dizzy when I walk or ride over a bumpy road (oscillopsia). I feel like I'm walking on a balance beam that is sitting on a trampoline!

All I know is when I move my head even a little, everything swirls and I lose my balance. And if I look at lights at night and move my head (or even my eyes, now), I see streaks of lights behind them, trailing in my vision (I guess that is palinopsia). My vertigo (room-spinning, BPPV) is pretty much gone. 'Starting PT next week, but I want to know if it will get better before I waste my allowable visits on an incorrect diagnosis! Does anyone know what physical therapy can do for me, and what it can't?

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  • dee50000
    dee50000

    Posted

    P.S. I have mild peripheral neuropathy, had a shingle vaccine last year, before this all started, and feel the feeling in your head that you get if you are very tired, even when I'm well-rested. I veer sideways when I walk, have to hold onto something when I walk, even if it's just touching the wall or walking with a shopping cart.
    • alison17886
      alison17886 dee50000

      Posted

      i know how you feel ive been suffering for 19mths virtually housebound and no 1 knows whats wrong feel as if my lifes over been on loads of different tablets i was diagnosed first mennieres then vestibular problems then silent migraine then a chemical imbalance in my brain then b12 deficiency i really give up hope you feel better soon x
    • Gilly_flower
      Gilly_flower alison17886

      Posted

      I to am nearly house bound , I've gone from a active life to this over night , the doctor s just dont seem to belive how bad this is , I do try hard to do things but god its hard , there's seems to be so many people like it , so why do the doctors not understand , and put it down to anxiety , let's face it your bound to be anxious when it goes on and on , with no help , x
    • alison17886
      alison17886 Gilly_flower

      Posted

      its not anxiety no way its awful gilly feel my life is over lost my job stuck in 24 /7 im 48 going on 90 thas how i feel the dizziness has brought on anxiety and depression but that is not the cause of the dizziness something is wrong but i cant get through to any1 its like the docs dont care hope you get better soon x
    • dee50000
      dee50000 alison17886

      Posted

      Yes, Alison, sometimes I feel like an episode of "House"! I do get migraines, and have a B6 deficiencey, so we sound like we have common symptoms. I hope you feel better too. (We have champagne! (see below) - lol)
    • dee50000
      dee50000

      Posted

      I meant common "possibile diagnoses".
  • jonAustralia
    jonAustralia dee50000

    Posted

    Hmm, wouldn't you think that this was such a serious epidemic of like symptoms, someone would have now seriously addressed our issues? The fact that they haven't I guess points towards the fact that the Drs et al, just don't understand enough about issues of the brain to make any headway. You describe how I react whilst on my long and meaningful walks (usually over 10 k's along the ocean) and the fact that to the causual onlooker, I must look rather p*ssed. Having completely recovered two and a half years ago, I thought that was the last of it, but no, six months ago it came back with a vengeance and stays in the form of the occasional full head and slight pain in the skull behind my ears and of course the dreaded loss of balance should I look up suddenly or around, I just try to minimise these movements. I am on anti stress medicine for a non-related issue and I am sure that they help. I long one day to read that some miracle cure has been found and until then I wish you well with your research and that you resume some form of normalcy meanwhile. Regards, Jonathon
    • dee50000
      dee50000 jonAustralia

      Posted

      Hi Jonathan, wow 10k, I don't think I could do 1k right now (well, maybe). At my appointment the other day, my eye-neurologist said (in an Argentinian accent), "We have champagne if it goes away!" He's funny, and easy to talk to, and he LISTENS and takes me seriously, so I am glad of that. He specializes in headaches, so now I/we are thinking it might be MAV. Hope so... that is controllable. Damage to the nerve might not be (some say yes, some say no). Still haven't quite figured out how VRT can help if it's not from a reversible cause, but maybe it will.
  • Gilly_flower
    Gilly_flower dee50000

    Posted

    I'm so frustrated at the moment , I just cant seem to get through just how bad this is , waiting for scan , taking ages , I cant make out why my eyes feel so bad with it , I end up feeling all swimmy , there now putting it down to anxiety , but that's not how it started , it's the doctors that making me anxious 
    • gillian76726
      gillian76726 Gilly_flower

      Posted

      I totally understand, have been through all his too, and still there.  I bangs on, and on about my eyes, no one listened.  I even asked to be referred,to a well know eye hospital ,in London (I,d been patient there years ago for Iritis), had a thorough check, nothing wrong per se with my eyes. I do,know that when my vertigo is bad, my eyes are worse and I want to,keep,closing them, and /or 'fluttering' them .  But I,now have learned that this is all because my eyes, my ears, and my vestibular system (Which I think,of like a spirit level,,that isn't level!)  is out of Sync and because the eyes are having to work ,overtime to keep me balanced, they 'play up', which is hardly surprising eh?  this is why I feel, when the physios give us these exercises with either our eyes opened or closed, our reponses  are different because closed we have lost that element that is helping, but sometimes when they are open the signals to the brain get confused. Does that makes sense? 
    • Gilly_flower
      Gilly_flower gillian76726

      Posted

      No exactly what you mean , I feel like I need to close my eyes a lot , or cover one up , just spoke to my doctor again , waste of time ,
    • Gilly_flower
      Gilly_flower

      Posted

      He wants me to go down the mental Heath route , as I'm so anxious , I said wouldn't you be anxious if you were like this since October the 12 th , and still waiting for test , it's the doctors that's making me anxious , 
    • gillian76726
      gillian76726 Gilly_flower

      Posted

      Yep not surprising it's because they ar not educated enough  in the vestibular system and they are basically guessing a lot and going along with whatever is in their medical,journals!!  and the 'mental,health route' is heir last  resort to save face!!  (Sometimes including anti depressants which I categorically refuse to take as it actually can make things worse as you can't take them forever no when you come from the you're back to square one because the cause fm he issue is still there!!!).  like you I have said the same thing about the doctors  and lack,of satisfactory treatment to makes me frustrated, not anxious!!  I,told my GP that once and I use d a B word !!  iF he gets pushy on that, just  say the only mental,health therapy you would,find acceptable,would be Cognative Behaviour Therapy!  nOt because it's a solution as such, but I had 8 sessions and got an intelligent woman who listened,which is  very important. And she gave me some info and tools,to,work,with whixh i use  from time to Time.  also order some Periwinkle tincture on line as I've done as its meant to be good for brain/vertigo stuff.
    • Gilly_flower
      Gilly_flower gillian76726

      Posted

      I told him ,I'm not getting caught up in that route , it's not solving the problem , I did say that he must think I'm mad if he thinks that I'm the sort of person who at the moment , cant do the job I love , cant look after my granddaughters on my own , have given up working in the charity shop , as I'm not save , have got to hang on to my husband when I go out , have spent a fortune on glasses , I really thought I was going to loose it in there , I felt so angry 
    • gillian76726
      gillian76726 Gilly_flower

      Posted

      Good for you!!  they need to be told and get a dose of reality. I had a run in with my GP this week which I won't  bore you with details on as its so convoluted!  bUt  when i got  though to her after talking to the  secretary she said 'oh my secretary said you were angry', and I said 'yes I am' and as she already knew  what had preceded this it shouldn't have been a surprise!  trouble,s you have to box clever with them in these situations as they can write all sorts down on your notes. Happened to a lady I know, who's very forthright (no rude), had a peek at her notes when th dr was out the room, and was shocked to,see this dr had written that she was something like (Forget actual words) she was nasty, rude etc etc.  so she took it up (Later) with the head of practice and complained 
    • gillian76726
      gillian76726 Gilly_flower

      Posted

      Page froze....again!!! She managed to get it taken off her records as that can be damaging down the Line.  I get the Impression that there are a lot,of doctors now who,do no like being challenged!! 
    • dee50000
      dee50000 Gilly_flower

      Posted

      Thanks Gilly flower. Yeah, very frustrating, especially when you do what they say and it still doesn't get better. I'm thinking now it might be migrain-associated vertido, except it's not vertigo anymore, rather the off-balance remains!
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