It’s been a long time since I’ve been here as from a medical perspective I have NO real updates other than to say the swellings in my lymph nodes turned out to be nothing - I do have Hidranitis (thankfully currently seems to be dormant) - but I had a few deep tissue massages when I was on holiday and she commented on my swollen lymph nodes and the scars under my arms - I was so ill after these massages - it’s very difficult to know whether it was a case of wiping toxins out of the body or a response to a Cypriot diet that whilst I avoided gluten laden food - because by their nature - their diet is heavily wheat based, there was a lot of cross contamination.
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I must say I haven’t maintained any sort of diary as I read above I was going to (I forgot) - I’ve even got to the stage now that when I go to see my GP, I take a written list with me or I’m screwed,
I’m still waiting to see the neurologist - requests to expedite my appointment were refused as “non-urgent” (they then wrote to me to ask if I wanted to stay on the waiting list)
I just don’t know what to think any more - I’ve had to buy stronger glasses - I get more headaches, intermittent double vision usually when trying to read something I can actually see (with or without glasses) - finishing a conversation has gone beyond a joke, it doesn’t help that my OH kindly keeps reminding me what a poor short term memory I have (I almost feel like he is deliberately undermining me and then he says I’m paranoid) - with a degree, masters degree and finishing my PhD half way through because of a change of career directions, I wouldn’t say my “memory” as such is an issue - but I’m starting to feel more and more like an idiot as I put things down and within seconds can’t remember where.
I also get “smell hallucinations” - we live in an old house and initially I thought it was just “damp” smells I was picking up - but it isn’t - these smells can happen anywhere - it is always the same, I can never get rid of it and it never has a identifiable source.
I was really scared initially about the prospect of vascular dementia - my GP assures me it probably isn’t MS - but every time I see her and my appointment is discussed MS does crop up.
I don’t know if I will feel better if I do find out what’s going on - but there really isn’t anyone I can talk to in my family - my OH has said he will pay for me to be seen privately if an appointment doesn’t come through - but even then - we can’t afford to stay on the private path - my GP says wait and see if I get the promised July appointment, and if that date shifts again - then look at private options - neurologists are considerably more expensive than other consultants as I’ve established.
Sorry pretty pointless “woe is me” post really - but not knowing what the hell is going on and stranger things happening to me is starting to make me think I’m cracking up 