Welcome to Our Community

Wanting to join the rest of our members? Feel free to sign up today.

Sign Up

Your good experiences with medical experts

Discussion in 'Dr. Visits' started by Horatio Hufnagel, Aug 25, 2014.

  1. Horatio Hufnagel

    Horatio Hufnagel New Member

    Maybe you have also made a good experience with medical professionals. If a doctor at least knows the problem it can already spare the patient a lot of hassle. Tell us!
     
  2. Benjamin

    Benjamin New Member

    Hey guys, I want to tell you my story of the past few months (excuse me for my english).
    I went to see a second neurologist for a second oppinion (the first one just sended me home with nothing, just a migriane he said). This neurologist really took me serious and wanted to examine me further. So he proposed too take a MRI-scan, PET scan, a 24 hour EEG (stay overnight at the hospital) and some test too test the speed light travels too the visual cortex. I thought this was a bit too much but then I tought about you guys here. I know a some of you would kill to get the change too take all these test and figure out whats wrong with you so I went on with it. It took more then 3 months to get all the appointments and take the tests. The 24hour EEG and PET-scan were not that confortable but I survived. Today I got my results of the test, nothing, everything was normal ... Then the doctor, to my great suprise, came in with this article (http://www.ncbi.nlm.nih.gov/pubmed/24645145) and said, you have visual snow (he only heard about it a few weeks ago). So i got diagnosed with visual snow. He said more and more reseach is done on the subject. I am no step further, but at least neurologists start to recognise visual snow as a real distinct disorder. I got a prescription for depakine now, hope it improves something.
     
    Jackie Vest likes this.
  3. Jackie Vest

    Jackie Vest Active Member

  4. Jeroen

    Jeroen New Member

    Hello,

    I will save you all my clinical history, but since a few months my symptoms seems to got worse, especially the after images/trailers (or I notice them much more)
    Therefor I went to my GP, who sent me to a ophthalmologist who off course couldn't find anything and said my eye's were healthy.
    So I went back to my GP and he sent me to a neurologist at our local hospital (Amstelveen, The Netherlands). I had little faith in something positive, but ok would will give it a try.
    I took this article (http://www.visualsnow.eu/wp-content/uploads/publications/01. 2014 - Schankin - visual snow distinct from persistent migraine aura.pdf) with me so I could show the doctor my symptoms (page 4).
    She first did all the routine examinations and everything was normal, no surprise there as I have done them multiple times before. Then we started to talk about the symptoms (VS, after images, trailing, etc) and I showed her the article. She instantly said: "That's a very nice article and indeed you have visual snow". She knew it because a friend of her was a neuro-ophthalmologist at a large University Hospital in Amsterdam (The Netherlands) and she had spoken to him a few times when she had patients with similar symptoms and he always said: "They have visual snow!" She only never had patient who had it 24/7.
    She now is going to make an appointment for me with this neuro-ophthalmologist, although she confirmed that there is probably not much he would be able to do for me.
    It will probably take a while to get the appointment because the doctor is working somewhere in Germany as well and is only a short period at a time in Amsterdam.

    I don't care if the guy can't do anything for me, I just want to talk to him and hear what he knows.

    It was nice to talk to a doctor who at least heard about visual snow and can also inform my GP, so next time I go to him he also knows about it. (SPREAD THE WORD!)
     
  5. Bobby Rae

    Bobby Rae New Member

    If in Melbourne see Dr. Neil Shuey. And tell him your story. His a neropthamoligist soz for speling
     
  6. Jackie Vest

    Jackie Vest Active Member

    That's fantastic!
     
  7. Jeroen

    Jeroen New Member

    Went to the neuro-ophthalmologist at the large University Hospital in Amsterdam (The Netherlands) who knew about VS.
    It was a native German doctor who part time works in Amsterdam.

    As expected he did the usual stuff and couldn't find anything wrong with my eyes etc. Then he started too talk about the visual snow, because he knew I came for that as my other doctor told him about me and thought that my symptoms could be visual snow.

    The conversation was nice, just because I could talk to a doctor, in fact two doctors, who new about visual snow and could also be honest about it.
    He told about the research that is being done and that it possibly a hyper active part of the brain that is causing the visual snow. That's nothing new for me, but just the fact of talking to somebody in a normal way with normal questions from both sides was a good feeling.

    Off course he couldn't do anything for me as a medicine or something. We talked about migraine medicines, but as I only have migraine aura attacks 4 times a year and can cope with them with a simple neurofen pill they didn't want to put me on a year of heavy medicines without a certainty it would help my visual snow. The best advice they could give me, and they apologized for it, was to not focus on it. They knew it is easier said then done, but we all know it's true. If you are distracted and busy we (at least I) notice it much less.

    So without being a step closer to any relief or a wonder medicine I came home with a good feeling.
     

Share This Page