Vision problems 5 months

Posted , 5 users are following.

I've had blurred vision spotty vision and kind of seeing shadows in my vision. I get some double vision like my eyes aren't working together. My eyes become very tired often and sometimes painful. I get these weird episodes when my eyes roll around uncontrollably for a few seconds to minutes usually when I'm first waking up. I've been through this stuff before. First when I was 16 it lasted a month and went away. Again it came back two years later lasted a few months and disappeared. It seems like every few years I get these weird episodes and it goes away within a few months. I've seen eye doctors and neurologists and everybody says everything's normal... I've had MRI's eeg lumbar puncture everything checked out fine but I'm still having these vision problems. For 5 months now it's been affecting me severely and put me out of work. It's a lot worse then my previous episodes. Also recently I've been diagnosed with iron deficiency anemia and I'm a 27 year old male. No bleeding found in urine or stool. Can anybody relate to me?? My biggest fear is that they will never figure out what's wrong. If anybody can give me advice I'd be very grateful. Thank you and God bless.

0 likes, 11 replies

11 Replies

  • Posted

    Hi Tyler sounds distressing for you.

    Do you get dizzy /vertigo too ? Has vestibular disturbances ever been mentioned ?

    • Posted

      Thank you for replying. It's horrible and took me out of work. I've been thinking about an ent consultation. I've never had any issues there that I know of but I do get dizzy sometimes and I know I had tonsils and adenoids removed but adenoids grew back.

    • Posted

      Hi Tyler

      With the symptoms ,especially your nystagmus which is the abnormal eye movement, I would have thought they would have maybe considered vestibular disorder. There are different vestibular conditions .One is vestibular nystagmus.

    • Posted

      Unfortunately I live in Maine and the doctors here are not the best to say the least. I swear you could go see a doctor for an ear infection and they'll try to put stitches in your toe and tell you to rest your thumb. It's very frustrating. I am going to tell my doctor to set me up with an ent to check me out. I have an appointment in Utah with a neuro hopefully brighter then the ones we have here.

    • Posted

      Sorry to hear that Tyler. Sounds really bad. I am in the UK . People complain about having to wait to see specialists etc here, but on the whole at least people do get referred. Appointments are often cancelled though by the hospital. And in my own experience they don't even change it to a different date. Just tell you non available at the moment. My partner has type 1 diabetes. Nearly every appointment he has gets rescheduled .

      I hope you can get referred to someone who can help you . Take care .

  • Posted

    Sounds like nystagmus. My friends husband has it. But i dont think its a symtom of Me/cfs. Thats more like constant flu like symptoms, brain fog, constant exhaustion and more . Good luck to you.
    • Posted

      Hi Tracy, I'm very sorry to hear your friends husband has nystagmus. If it is similar to my vision problems I am sure it's very scary and stressful for him. I did some research and I do fit the criteria pretty exact. I have seen two eye doctors and an optometrist as well as a neurologist. I've had 100% normal eye exams and a lot of test that confirmed everything with my eyes are perfect (thank God). My neurologist has done an MRI, LP, and an EEG which all was normal. Does nystagmus often get missed at first? I'm not confident at all with my neurologist. He told me he can't do anything more for me anyways. But any advice on nystagmus would be greatly appreciated as I'm planning on asking my GP about this condition on my next appointment Tuesday. Thank you so much for your advice. I feel so alone with this problem and I need my life back. I have two kids to raise and this has put me out of work and savings are running low!

    • Posted

      Indeed it is not a symptom of CFS/ME.

      Nystagmus can be congential or aquired. When aquired if is usually a symptom of another condition ..

      Nystagmus is essentially the word for the involuntary rapid eye movement.

    • Posted

      If all your tests have been clear that is really good Tyler. Shows there is no obvious sinister underlying cause and ruled out things like MS. Which I would assume you have been assured by your consultants. Especially the neurologist.

      There are different forms of nystagmus. That's what I asked if you were dizzy . Vestibular nystagmus tends to cause dizziness as the inner ear is affected. Can affect balance too. Have you had any tests relating to your inner ear?

      I am not hear to say what should happen to you ! But there are various medication treatments for different forms of aquired nystagmus. I hope your Dr can help you. Take care.

  • Posted

    Have they tested your thyroid?
    • Posted

      Hi Amy,

      Yes they have. It's completely normal. One thing they found is my iron levels are so low it has made me anemic. I've had several test to look for bleeding and blood loss, and there is none. I'm far from vegan. I eat meat at least two times a day. So the doctor is pretty shocked by this. But of course he says "wow that's so strange" and nothing more besides prescribing tons of iron pills that don't even help. Maine is absolutely horrible for any medical attention. I've seen tons of people I know die from things that could of easily been avoided. But I'm still searching for answers.

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