I’m delighted and I’m furious: neck problem finally diagnosed and getting treatment

DH went to the doctor with a hand tremor. He was sent to the hospital where they did tests and told him it was carpal tunnel. Eventually, after other tests they came to the same conclusion I did at the start and, of course, he has Parkinsons Disease.

Rubysong, so sorry to hear this. It is good to finally get a diagnosis though, so some treatment or drugs can be started.

So pleased for you Maddy I do understand your frustration I do think we put up with an awful lot before we get the help we need and deserve. You haven’t had an easy time of it these last few years, and i’m so pleased you can see an end to your pain.
Thank you for posting too as this might help someone else looking for answers. Good luck.

Sadly this run around is not unusal now. As you said it's done to keep names off the waiting lists. I need another hip replacement but am going through the same kind of thing, medication....which doesn't help just causes more issues. Then physio which is nearly impossible to do due to the pain and stiffness I have!!! I walk every day all be it slowly and do seated exercises twice a week. I am pro active in trying to help myself but I know I need HR as it's the same pain I experienced in my other hip.🙈

maddyone's referral to a physio was pointless - it is just a stage in the delaying algorithm, and potentially dangerous. I am glad to hear that one poster above had a physio who refused to treat, but referred to where they should have been sent in the first place. As travelsafar points out ..."Then physio which is nearly impossible to do due to the pain and stiffness I have!!!"

The physio game is a delaying tactic to avoid facing up to the fact that there are insufficient doctors available for the first step - a proper diagnosis, which is how it should be done. People should be referred to the right specialist (or diagnostic scan/tests) for a proper diagnosis rather than massaging the waiting list figures by delaying people actually landing on it.

It is so wrong. I am convinced that the physio I was given to do ref my hip pain resulted in my prolapsed disc which needed surgery - which I had to pay for in order to be able to walk at all.

And a week ago I went into hospital for injection into my hip and was given the wrong consent form to sign which said I was having one injection when in fact I was having another - the one on the form is absolutely contraindicated and the consultant acknowledged this when I challenged this. What if I had not been on the ball?

It is all a sorry mess - my GP late OH would be turning in his grave ......

I hope now that you will find relief from your pain, Maddy One.Thank you for telling everyone of your difficult journey.
It really is a dreadful state of affairs that it has taken so long for the problem to be identified.
Perhaps we should now speak out more and loudly.

When I finally saw the consultant he refused to give injections because "You'll be having the operations soon and injections might cause an infection" 🤔
Thst was over a year ago.

Meanwhile, it is nearly 5 years since I had the X-rays.

I am so pleased for you Maddyone.
I sort of share your feelings. Yesterday, for the very first time in spite of all my efforts, my doctor has finally agreed that I can have my spine X-rayed.
It's hard to put into words how angry, frustrated, furious I feel, yet now relieved. All these years of pain, trying to be stoical and just trying to get on with things.
I await an appointment. Good luck Maddy.

Thank you so much for all your kind messages. Quite a few of you are in similar positions, waiting for treatment and often being pushed down the wrong road in order to avoid having to actually treat you. I so understand you henetha and others who are coping with daily pain and fighting for a diagnosis. It annoys me that there are people working in the NHS who are not medics, but who are there working out how they can prevent patients from being put on a waiting list. Often this means being denied a diagnosis. I only got a diagnosis, and it was only a partial diagnosis, in December, almost a year after I first approached my GP. The second physiotherapist gave me a rather incomplete diagnosis, but yesterday the consultant gave me the full diagnosis. For me this is narrowing of the spine between C4, C5, C6, and C7. The C6 is the one causing the intense pain in my hand. The physiotherapist said C4 and C5 were causing the pain but he was wrong. C6 is the culprit. It may not seem important but to me it is. It’s what happens when staff who are not consultant level interpret MRI scans. Of course physiotherapists do a wonderful job and I’ve received excellent treatment from them and from occupational therapists too, but at the end of the day, the Spinal Consultant is the person who should interpret the results of the MRI scan for you.

Exactly.
I hope you will get the proper treatment now.

So pleased for you Maddyone how you managed to get to your daughters is something only a mother would do.
I hope you quickly get your treatment.
I asked for a second opinion from my physio about problems I have with my hip. She ignored me in November and then In January said she would refer me. It was only when I was encouraged by my GP at the end of January that I found out she still had not referred me. Thankfully my GP took notice.

maddyone I have the same condition as you, symptoms were neck/shoulder pain and difficulty sleeping for many years. Diagnosed eventually last June when I was admitted as an emergency head/neck pain and they feared meningitis. I was in hospital for a week and had xrays/CT scan/MRI and lumber puncture.
I had been also diagnosed with the same in the lumber area the previous year. This causes me dreadful hip pain because of nerves caught in the narrowing exits from the spinal column.
I've been told that an injection will not help either area and that neither will surgery until the narrowing is worse. I've been referred to the Pain Clinic which has confirmed the waiting time is 4.5 years.

I would consider going privately to a pain specialist but I'm already paying privately to see a Dermalologist about a mole changing colour. GP referred me to Dermatology as very urgent..... Waiting list for very urgent is 5 months in NHS hence going private.
What with other ongoing medical issues I am at a loss with the NHS.

maddyone I am so glad it has eventually worked out with you.

I'm afraid misdiagnosis of hand/neck pain has been going on for at least 30 years that I'm aware of.

I had the same problem - excruciating pain in my arm, shoulder and hand and was visiting my GP regularly about it. He told me it was all sorts of things, but just kept prescribing strong painkillers, which made me feel as though I was permanently in a daze.

One day, I bought a computer and had it installed with something which was innovative at the time - home internet! I searched for my condition and - lo and behold - came up with exactly the pain I was experiencing.

So I made yet another GP appointment - it was easy in those days - got my husband to draw where I was experiencing pain down my arm and hand with a felt tip, printed off the page I'd found and trotted off to the GP, who was amazed that I seemed to have found out what was wrong.

He referred me to a neurosurgeon, who ordered an MRI. The neurosurgeon told me he already thought he knew what was wrong, but wanted to check. He was right. I had six weeks of intensive physio, which worked to a degree. I'm very tall and didn't have very good posture because I slouched. Whenever I have the slightest pain, I remember the exercises the physio gave me and I do them.

I would consider going privately to a pain specialist but I'm already paying privately to see a Dermalologist about a mole changing colour. GP referred me to Dermatology as very urgent..... Waiting list for very urgent is 5 months in NHS hence going private.
Coolgran 5 months is shocking.
The wait was 10 days here and the mole removed the same day.
Of course, getting past the nurse and receptionist at the GP surgery took a lot longer 😡

Callistemon21

^It particularly irks me that your GP would not refer to spinal consultant without you first going to see a physio. This really is such nonsense, and can be dangerous - diagnosis first, physio second (if it is relevant)^

Yes, that is shocking!

Firstly am sorry to hear of this medical runaround and the pain you have had to endure meanwhile.
Secondly Mum had a problem last year with her back and was fobbed off with seeing a physio even tho the GP had confirmed she needed an MRI.The waiting list for seeing the physio was a month, and when they finally rang her she found it was just that, a phone conversation where they said they’d send her some exercises to do. Two months later they did see her in person and said that she needed an MRI😡
Am sure it’s a way of kicking things down the road while saying they are providing treatment.
Fingers crossed you’ll get the treatment you need really soon.

And what did that wasted referral to a physio cost the NHS, when it was quite clear from the start that an MRI scan was required.

It was two visits to a physiotherapist Monica. The first because that is ‘the route’ to the spinal team. The fact that a Hand Consultant (who actually did one of my trapeziectomies; surgery for arthritis in the thumb joint, which was completely successful) identified that the problem was not my hand, but my spine/neck and that an MRI was needed to confirm this, but he was unable to refer me on to the correct pathway and instead I had to take up another GP appointment, followed by a physiotherapy appointment, and after the MRI, a further appointment with a different physiotherapist, who the referrref me back to the spinal team. So three appointments and one team meeting in order to arrive at the same point. What a waste of time and money.

I had to contact PALS and tell them that I did not want any more ultrasounds done, as I now needed to see someone about the findings.
I'd had four by this time, and was about to be sent for a fifth!!

I'm sure it wastes more money making all these appointments for "lesser" investigations, than it would for one definitive one.

I’m sorry but not surprised to hear about your mother Oreo. It sounds familiar, force a person to go to a physiotherapist before they are allowed to access the needed MRI. I hope your mother has had her MRI now and is on the correct pathway to receive the treatment she needs.

I’m in the lucky position of being considered fit enough to have my treatment at the private hospital, under the NHS, but if I had multiple conditions that would complicate the issues, I would have had to wait longer to receive my treatment (by the same consultant or another one in his team) in the city hospital, in case anything went wrong during the procedure.

All your responses to my original post have made me just how huge this problem is and how many people are being denied the treatment they need in order to keep them off the waiting lists by forcing them to go through pathways designed for just that purpose.

made me realise just how huge this problem is

But if they didn't waste £millions on all these pathways, they would have the money to treat people ho need treatment.

Yes indeed Monica.

I suppose a lot of people will be helped at some point in a pathway, but to keep flogging a dead horse seems ridiculous.

Maybe this chart explains why there's a delay in MRI scans.

The chart above is from this report www.kingsfund.org.uk/insight-and-analysis/blogs/comparing-nhs-to-health-care-systems-other-countries