Hello I’m Julie and had undiagnosed stroke 7 years ago. I’ve pleaded begged and cried at doctors A and E and neurologist galore and my GP is just not having it I had a stoke because of non text book symptoms. My whole life changed over a few months. First symptoms was my eye completely loss vision in my right eye and then a few weeks later sudden onset of bladder frequency and absolutely chronic pain in my left butt bones / pelvic that is so bad I could scream. Never mind the depression and the dismissals over and over again from medics. I was 55 and living a normal life and bang all gone. I am 63 now and live alone with nobody except inexperienced carer that comes to heat up food. I am struggling to carry on to be honest. My GP put it down to mental health and wanted to rip her head off and she still stands by this and I know by my brain and body it isn’t and have had no help whatsoever with rehab or meds at all. I’m barely able to go to toilet and get a drink and lay down all day and cry a lot. I dont know where to go for help anymore because my GP has blocked everything. The whole left side of my body is clamped and so painful of which normal pain killers don’t help one bit. Sadly my two adult sons just don’t get it and one of them sort of sees my decline and change of life but miles away and just wants me to move to assisted living near him. I need more care than that but without diagnosis I’m not getting any help at all. GP blocks everything and she didn’t even know me prior to this so has only ever seen me in this mess , I’m finding it harder to get out of bed and can’t attend appointments at doctors and she says I’m not bedbound so says I have to go to the surgery to see her even though she dismisses me all the way. I’m incredibly depressed beyond words and can’t sleep at all. I’ve tried so hard to advocate for myself but have run out of energy and exhausted just being alive. I have 2 adult sons miles away and 5 grandchildren and don’t really see them, my eldest son does come occasionally on his own. All friends gone. Just like a veg really but able to make a drink and heat food but that’s it. Can’t exercise at all so completely flat out all day with nothing to look forward to , it’s hard to be here at all and sometimes well, I wish I wasn’t. Lost my beautiful life at 55 and no treatment due to negligence and dismissed over and over. I am so sad to say the least. I wish I could disappear but don’t want to hurt anyone. Why is the depression and insomnia so bad? Any ideas ? The chronic pain especially my pelvis butt bones is agonising and makes everything else so much harder. I contacted PALS and various others including local MP and nothing , got sick of chasing them so here I am not living and just waiting for ??? Nothing.
I’m sorry it’s so long and so negative I just needed to reach out and see if anyone can offer anything to me to get help. No diagnosis equals no help. All my savings gone that I saved for years to have a happy life later. Not to be and the anger, well that is vile to say the least. I have hatred yes horrible word , for the medical team that ignored me on those fateful days. I’m not sure how long I can carry on as each time I’ve seen private neurologist he insists on writing to my GP which equals deadlocks. What can I do I have no energy left at all. Thanks if you did read or can offer any help at all. Julie xxx much love to all here. I love on Sussex coast all my life.
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If you pursue an MRI or CAT scan, that will take time, could take six months, could take a year. Who knows. Perchance your condition is not related to a stroke, it is important to work out what is causing it, and although it is useful to rule out stroke, it is also important not to chase a potential red herring all the way down the river only to find there is something else that is fishy upstream and should have been addressed sooner.
