For anyone who has Visual Snow…

I made a survey to get an idea of the various symptoms that people with visual snow have. I will post the results stats on the VS Facebook group and on here once I get a decent number of responses.

Please take part if you have VS! It’s anonymous 🙂

https://www.surveymonkey.com/s/XCSHK2J

Advertisements

Chiari I Malformation

Has anyone heard of this? I found out about this online and it seems to match a lot of my symptoms, such as the vision loss, dizziness, numbness and headaches at the base of the skull (feel kind of like lumbar puncture headaches), which appear in particular when sitting or lying in certain positions. Perhaps it would even explain the heart palpitations.

The only thing is, I have already had an MRI and it wasn’t spotted on that. But then it wasn’t looked at by a specialist. Also, the lumbar puncture I had last year did not suggest high CSF pressure. Maybe I’ll ask my doctor about it anyway.

Warning: This is a Rant…

I appreciate British healthcare and the NHS, I really do, but sometimes I think medical staff are forced to justify their actions to such an extent that patient wellbeing suffers unnecessarily.

For example, if I went to my GP with a stomach bug or a fever, they will happily hand out antibiotics without a formal diagnosis. They don’t pass you from specialist to specialist so that by the time you finally receive treatment the infection has spread to the rest of your body!

But this is not the case with all types of illnesses.. I am now on my 3rd ‘episode’ of whatever this is (see previous posts for details). I know with things like this they often tend to take a ‘wait and see’ approach and a lot of people are left in limbo for years during this time with no treatment.

In my case, although most of my symptoms largely ease after each episode, the damage to my visual field remains permanent. But the last episode lasted from May to October 2012. I just wish that a doctor was able to try treating me with something without a diagnosis. I have heard cases where GPs have handed out a single course of steroids without a diagnosis but this is not my experience.

I actually got upset at my opthalmologist appointment this morning due to the feeling of helplessness, to which he suggested I see my GP for ‘psychological help’. I don’t want that… Sorry for the rant.