I was diagnosed with Central Nervous System Vas last year (Sept 2011) after a lengthy stay in hospital (a lots of misdiagnoses before handd) and when I got out I was told by my rheumatologist that he would ensure that Neurology also gave me follow up appts and MRI of brain to check that no damage was done from legions/TIAs that I had in the lead up to diagnosis. I reminded him every appt and finally in August 2012 (after I got very upset) he wrote a letter to a 'friend of his' and I have had an appt for Nov. He also said that he would see me in 3-6months for my next appt with him and then I got an appt through for March 2012! When I phoned the hospital I was told that that was the soonest appt for him - 7 months after my last!
On top of this at the beginning of the year I explained that I was concerned that due to Cyclo treatment it may have had an affect on my fertility (as I have not had children yet, am only 30 and would like them as would my husband) so he arranged for ovarian function blood tests to be done. When I asked for the results at my next appt he questioned who had ordered them and told me he was not a GYN so did not know the outcome - only that they show a result of 32 - which he did not know what that meant. Even after asking him to find out, I am none the wiser - I hate being in limbo (esp. about something so important) it's like taking an exam and never finding out what grade you got.
Thirdly, at the beginning of the year my rheumy asked if I would like to go to Addenbrooks to see Dr Jayne and of course I said yes - but to date he still has done nothing to refer me so I took it upon myself to phone Addenbrooks a couple of weeks ago to ask if I could refer myself. The lovely nurse explained that I could not self-refer but my GP could do it - she gave me a fax number and told me the info that would need to be sent to them. As it had taken so long already, I took it upon myself to type up all the relevant info, went to the doctors asked to be referred to Addenbrooks, showed them the work (I had done for them) and the fax number and was questioned why I would want to go there. After outlining my reasons (as explained here!) I was told to "book a double appt for next week as we will have to go through forms, it will have to go to a board but I will do it." When I went back for my double appt yesterday, I was confronted with a different dr who refused to do it as it would 'take too long' and if the neurologist thought I needed to be referred he would do it in Nov. I explained that it is not just a question of 'needing' but also 'wanting' to be referred and do a patient's wishes not come into account - he tried to reassure me that if I still wanted to be referred then it will be much quicker coming from the Neurologist than from a GP surgery (although as it taken over a year to get an appt I question this logic!)
Also (sorry my rant is almost done!) approx 5 weeks ago I started intermittently losing hearing in my right ear, both have been incredibly itchy and waxy and my face has been hurting. Since then I have been to the drs every week (seen someone diff each time?!) and have been told that it's blocked so was given drops, had it syringed with no wax evident, been told it's an infection so been given antibiotic spray, been told it's something called Eustachian Tube Dyfunction so given more drops and a nasal spray... and yesterday I was told that it was just waxy and I should use olive oil and it would clear itself...eventhough it hadn't up to that point.
When I was in hospital and blaming myself for everything and stating that I should have made more of a fuss about all the problems I had before as I felt like my concerns and symptoms had been ignored for the 2 years prior to diagnosis, a kind neurologist said to me that from now on no doctor could ignore my symptoms and even a cold would have them questioning whether it's Vas related, but at the moment I feel exactly the same again. This time though rather than blame myself I have tried to be proactive and still I am getting nowhere. I feel like not only am I being ignored, I am being left to 'see what happens' and I worry that it would take another complete crash for anyone to pay attention to me. Maybe I am being over-concerned, maybe I'm over-reacting but today I just feel like crying and I don't know what to do. I don't want to end up in hospital having had a stroke again or worse.
Sorry for the EPIC post - do these points sounds like valid worries or am I just being over-sensitive and this is normal?!