My hope is that you informed them that it is much the same here, but with the added bonus that there is a decent chance you’ll also end up totally broke! :-\
3 Likes
Yes. All I ever get from the NHS is silence. I was refered by my GP in June 2024. Didn’t get through the door in the neurologist’s office until October 2025. First I heard anything about even the phyical exam he gave me, let alone the results of my blood tests and EMG was a week ago.
1 Like
Man that sucks. As a human with a chronic condition and also as a GP in Germany I feel for you.
2 Likes
Especially given the circumstances of what’s on the table.
1 Like
I’m a bit lucky in the funding regard, military has a Medicare (gov’t-sponsored old-people health insurance, an 80% plan) supplement that pretty well takes care of the remaining 20%. That, and we were able to stay on as patients at the nearby Air Force Academy hospital, which puts us in their pharmacy system.
The thing to do in the states seems to be to get on with an employer that has decent health insurance, then work until you’re 65 to be eligible for Medicare. Some employers still offer retirement-medical, but that number is dwindling. I don’t know much about ACA, where people who otherwise don’t have employer-sponsored insurance can go to a “marketplace” to shop plans.
My wife is the insurance expert, skills honed when our oldest son was hit by a car and sustained a life-threatening head injury. During recuperation at Craig Hospital in Denver (The Very Best Place In The World for TBI, can’t say enough good about them), she recalls getting an outrageous bill from one involved provider. She takes it to the hospital’s case manager, who gives her the following advice: 1) Ignore the first bill. 2) Ignore the second bill. 3) When you get the third bill , come to me and we’ll craft a very-specifically worded response that’ll vector them in the right direction.
Geesh…
2 Likes
I’m really sorry to hear this @martbetz
I will be praying for you.
2 Likes
Best wishes for a positive outcome and a clear path to recovery.
2 Likes
I can sympathise @martbetz . I have been on a similar diagnostic path over the past few years from 2021 to 2025). Neurologists (two of) thought it was M.S. Then I got tested to rule out Parkinsons / MND / Genetic Testing along with nerve conduction tests and umpteen MRI scans.
In the end I recieved a diagnosis of a “Functional Neurological Disorder”, which unfortately gets treatment in the form of a website to look at, Functional Neurological Disorder (FND) – A Patient's Guide to FND and then discharged :-/ This diagnosis also unfortunately means that everything from now on will be blamed on it.
3 Likes
I just wanted say once again a huge “Thank you” to everyone who has shared their own experiences with me and for all the best whishes and kind words.
I’ve received more understanding and support from this one post in just a few days on a photography forum than from anywhere else in the last two years. If I could only express how much that means to me. I am overwhelmed, but not suprised - because this forum, and all of the wonderful people on here are simply the best.
I’m sorry if all that sounds a bit over the top and dramatic, but it’s true - believe me. It really does mean that much.
13 Likes
Mart I would echo that. Some time ago I shared a little about my journey. In my case it was my spouse and her diagnosis of FTD-bv at age 62.
I was feeling quite down in that moment and also very grateful for my little haven of escape to the pixls.us forum and the many great people here that I get a chance to interact with I was grateful then and now for the fellowship and words of support from forum members.
I see daily the ravages of a neurological condition and how it steals away a person’s quality of life. I am pulling for you in the strongest way and I hope when the MRI pulls open the curtains you get images that are the roadmap back to better health…
Sending some good vibes your way…
7 Likes
Second that.
7 Likes
Thank you for sharing your journey. Those of us who have not yet or have not responded to this thread, we are listening and with you; if not through physical proximity, then through all the digital connections we made along the way.
Indeed, the medical sector can be challenging to navigate. From decades of stressful experience, persistence and evidence-based assertiveness goes a long way. If you need medical data and transfer, go to the hospitals and clinics to order and retrieve them. Do not expect them to comply on first visits or enquiries or communicate with other departments or agencies. Make it happen yourself. It is terrible when one is sick, immobile, etc., but it must be done personally or through an advocate or support person. That would be my friendly general advice.
3 Likes
Firstly, my deepest sympathy and prayers that all will be well!
I’m in my own health struggles myself, albeit very different problems - I only say this in solidarity and to offer understanding of the anxiety.
Are you able to use the NHS app? After linking it with my GP I get all my test results in gory detail as soon as they’re available (often weeks before the follow-up appointment)
This is only basic blood tests in my case but I assumed it would apply to all tests (quite possibly mistakenly).
3 Likes
I am reasonably healthy in a very unfit sort of way, but my wife is not. Emerging from cardiac artery bypass surgery, but having other circulatory problems, her next hurdle is eye surgery, and it is surgery, rather than any form of laser process. This may begin (two eyes, two months) next week.
I can understand that it must be very gruelling waiting weeks for results of tests. When I was in England (I am British) it took months for initial appointments, and, in my biggest tryst with surgery, it took five years for them to see something on a CAT scan that had been invisible to x-rays. But once found, things moved surprisingly fast. I’m afraid that the NHS has changed a lot since then. Mart, I’m sorry you are having to go through this. Again, very best wishes.
Here in India, one only has to pay for the process to be able to walk away with the results (or maybe next day) and one can access consultant/surgeon on the same day subject to their hours.
Very best wishes to all with health problems. And very best wishes to the carers and family members too.
2 Likes
Thanks, @123sg.
I tried the NHS app, but it was (I’m sorry to say) pretty much useless in my experience - all I have access to, after going through all the bother of ID varification, is a list of prescription medications I’ve had for minor ailments throughout the years; it doesn’t even show that I’ve been refered to neurology, let alone show any results.
1 Like
This forum is a wonderful sanctuary from at times a troublesome world. We are glued together by a passion for photography that has no international boundaries. Clearly many of us here have faced health challenges and get some reprieve here. I for one have successfully fought off cancer not once but twice in the last few years since being involved in this forum. I wish @martbetz and everyone else here the same success overcoming their health issues as I have had.
6 Likes
You have my deepest sympathy.
I’m not a big fan of medical diagnoses or prognoses. Diagnosis: Life is a sexually transmitted fatal disease. Prognosis: We’re all gonna die.
I’ve had a few close encounters with the grim reaper. So far, the NHS has pulled me back. But there will come a time when the reaper will win. Meanwhile, I age and become more disabled. This reduces the things I can do easily, or at all. I expect there will come a time when I can no longer type at a keyboard. Or walk. Or feed or dress myself. If I don’t get run over by a bus first.
But increasing disabilities also increase my appreciation, even pleasure, of the things I can still do. I enjoy the moment far more than when I was younger and more abled. I am less concerned about things that don’t matter.
My personal experience may not apply to anyone else.
4 Likes
Hungarians complain a lot about the state insurance system (with good reason), but when I hear stories like this I realize that it is still not that bad. And when it comes to records, everyone (both public and private providers, if I have my state insurance number to the latter) upload everything (literally everything) into “the cloud” (it has a bureaucratic-sounding name, Unified Health Service Space, which no one uses). It has an app and a website. Getting access just takes a no-appointment visit to a local gvt office to get a login, done in 10min.
Prescriptions are no longer on paper, but in “the cloud”. Recently I was traveling and I left some medication at home, called my family doctor, and it was prescribed within minutes. [The difficult part started when I walked into a Portuguese pharmacy, imagining that showing the prescription (in English) would get me the medication.]
3 Likes
Yeah, our pharmacies use our national prescription system so it’s quite bothersome to get prescriptions that don’t use the same source.
My sister is in Scotland right now, and I was extremely surprised at how “behind” they are in the digitization of medical services. Portugal is way ahead which I was not expecting at all.
Apparently in England they already have the NHS app, but in Scotland they don’t and the perscriptions are still done all in paper, quite weird 
We even have our “habitual” medication which can be requested in the SNS(NHS) app at any time and then our family GP will prescribe it.
2 Likes
Apparently there is some EU framework to handle this, but after trying for 10 minutes, the kind people at this Portuguese pharmacy just decided to give me the medication without any further hassle, apparently assuming that I am acting in good faith. One thing I love about southern Europe (Portugal/Spain/Italy) is that when things do not work, they find a human solution.
5 Likes