-
That sounds fucking rough and quite similar to the problems my ex developed from COVID itself and some of the struggles she's had getting bounced around between different diagnosis and treatments due to people not knowing what the actual problem is and her now being allergic to most of the available drugs.
-
Sorry to read this. I'm in a similar boat. Given the inadequacies of the vaccine damage payment scheme, have you considered consulting with a solicitor? Feel free to PM me if you'd rather not respond here.
-
This sounds awful...
We fought for an MRI
Can I ask how you did this (or access to neurology in general)?
Just completing about 6 months of Long Covid occupational therapy. My OT (who has been great) has tried to refer me to LC Neurology clinic and it's been turned down, which is rather surprising and upsetting. Will apparently be offered a physical/mental managing long-term symptoms course in another 8 months instead.
I've also been on a '3-4 month' waiting list for LC psychologist for a while, as the psychologist job is vacant... have just been vaguely told to go to charities (who also have long, indeterminate waiting lists) in the meantime.
Feel I've got a front-row seat to NHS collapse.
You are reading a single comment by @ELbowloh and its replies.
Click here to read the full conversation.
snottyotter
¡apesta!
chez_jay
@ELbowloh
Not sure if classed as long-covid, but my wife has been ill from the first dose of the Astra-zeneca vaccine.
A week after the vaccine, she had a "grey out" and has been suffering from neurological (and other symptoms) ever since. the symptoms include brain fog (or feeling drunk), balance issues/swaying sensations, visual issues (particularly sensitivity to light and movement). The doctors/consultants have been are pretty certain that it was triggered by the vaccine, but obviously can't attribute it 100%.
Tbh, its been a fucking nightmare since day one. I love the NHS, but they really didn't know what to do with her and we have had to really fight to a) first get anyone to do anything and b) someone to take responsibility for her case. I think the main issue is that my wife came down with so many symptoms and this all triggered a number of different illnesses that it made it difficult to make a diagnosis.
We fought for an MRI, which showed she had lesions on her brain, they first diagnosed her with multiple sclerosis and started her on treatment for that. Then told her it wasn't. Then they tried to tell her there was nothing wrong with her (in spite of the brain lesions). Then they told her she had FND. Two of the top UK experts on FND told her that she didn't. The other neurologists then still insisted that she did have FND and tried to pass her on. She's now been told that the lesions are the result of a stroke. We know for a fact that another MRI that was done in March this year, stated that the radiologist thinks she had a stroke, no one told us this officially because the consultant that ordered the MRI left the trust and no-one took on my wife's case. She saw a consultant (not a neurologist) about another issue in August and my wife asked them to look at the scan results because we hadn't had them back yet and he said "well according to this, you've had a stroke". That Dr made the referral and we're awaiting an appointment with the stroke clinic, 2.5 years after this started off.
She also developed heart irregularities, after much fighting again and moving around hospitals and being told there was nothing wrong, she's been told she has POTS (postural orthostatic tachycardia syndrome) and also "other" autonomic function issues.
The vaccine has also triggered autoimmune urticaria, which means every so often she breaks out in hives all over her body. We don't know what triggers each episode still.
Our local NHS trust hasn't been good (Epsom and St Helier), neither was UCL, but she is seeing a neurologist at Kings and also consultants at St Georges and they have been so much better and have taken her more seriously, but it's been such a struggle to even get this far.
Just want to be clear, we're not anti-vax (my wife is a vet) and we have no issue with getting vaccines for ourselves or our kids.