GP isn’t listening, private scan or neurologist appt worth it?

[er15]

Hi all,

A little bit of history about me is that 10 years ago I had a rather scary few months with some neurological symptoms namely numbness in my hands and feet and extremely heavy legs, after some severe medical gaslighting and 3 months using a crutch as I could barely walk, I was eventually diagnosed with pernicious anaemia after getting blood test results 4 months after the tests were done. I’ve been on 8-weekly injections and had little to no symptoms since.

Flash forward to 10 years later and I now have a whole list of slightly different new neurological symptoms. This isn’t the entire list just want to give you some ideas.

• Numbness in my hands and occasionally feet.

• Tremors in my hands, constantly in my left, only when I’m using my hand in my right.

• My arms constantly feel heavy and sometimes picking up anything such as my phone feels impossible.

• I keep getting muscle spasms/jolts. I’ve had them everywhere, in my tummy, face, arms, legs.

• I have a weird sunburn like feeling on my arm and leg. Makes wearing any long trousers or long sleeves incredibly annoying.

• Doing anything makes me beyond exhausted and I am at times sleeping 12+ hours.

• I’m itchy for no reason, irritable for no reason at times.

• I struggle at times with words and with my cognition.

• Whenever I touch anything cold, it hurts beyond words. Whether I’m touching something from the fridge or even cutlery at times.

• I’ve been to my GP on and off for around 4-5 years with swallowing issues and everytime I go back with it I get omeprazole thrown at me and told it’s indigestion.

• Everything seems worse on my left side than my right, also symptoms seem to get worse when I’m warm.

I’ve been to see doctors at my GP practice 3 times now, first doctor told me I had migraines, 2nd doctor booked me a CT scan and took blood but never bothered to even give me any results (everything was fine but a follow up when still showing symptoms is still a decent thing to do), 3rd doctor spent 5 minutes of the appointment looking on google images for a certain view of the bladder after I admitted having some incontinence issues which resulted in me not having time to tell her a fraction of what’s been going on, after I told her the main thing I worry about is waking up one day and struggling to walk again she responded with “it might be anxiety then” and when I fought back with “I wasn’t anxious walking to my cabin on a cruise ship last week and my foot still went numb randomly”. She then told me she’d ask neurology if they want to see me, wasn’t phrased like a referral.

I have an aunt who is a doctor, albeit abroad, who told me to look into MS after a recent call with her after my latest failed GP appointment and having confirmation that it’s unlikely my PA.

I’m wondering if it’s worth my while looking into a private MRI or a private neurologist appointment? I’m based in the Glasgow area. A family member recently waited over a year for a standard neurology appointment and MRI. I’m not rich by any means but I have enough put away for one of them. Is it worth it? If I went for the scan would my GP accept the results ok? I’ve heard things about people going private for certain tests and being told they have to stick with private healthcare if any diagnoses are made or anything is uncovered during tests.

As you can tell I don’t have a whole lot of faith in my local healthcare system and I’m just really really scared that somethings wrong and it’ll take me months if not years to figure out what’s wrong.

Thanks for reading, any advice appreciated.

I’m also a female who is 29 if that’s relevant.

[jthatcher]

Hi Er15. That certainly doesn’t sound like much fun. Are you having any vision issues? That seems to be a start with a lot of us (it certainly was with me).

I seem to remember that some have had success by getting things kicked started with the private route. Other than that, could you ask to see urology at the hospital for your bladder issues? They may be more empathic when refering you to neurology

Best wishes x

Jon.

[er15]

yes, I seem to be getting the odd moment of blurry vision and I’ve had one or two bouts of double vision as well as periods where I don’t feel like my eyes are working together but I’ve been checked by my optician and he has cleared me.

[jthatcher]

The eye unit at the hospital may be worth a visit - Opthalmology will often refer to neurology if they suspect a deeper problem

[busybroccoli]

Really really sorry to hear you are feeling ignored when you are experiencing symptoms!

I really relate to your experience so much and know you must be facing a lot of stress and worry.

Some people have success down private route but I will let you know my experience as, if you go down that route and it isn’t what you expect then know you are not alone. Sorry in advance for the incoming essay.

I had years of NHS telling me my symptoms were anxiety, depression or vitamins (iron). They convinced me at points. One bad time years ago, I kept finding myself on MS sites with related symptoms… went yet again to my NHS gp but this time felt brave enough to directly ask for neurology referral. They said they couldn’t on NHS but they had a private neurologist friend they could refer me to. I took the option and used savings.

That person made me feel like an idiot. He told me clearly I’d been on google and worried myself. He refused any further tests or scans. Wrote back to gp to say that I had just worried myself. It stopped me seeking help until last year.

I don’t say this to worry you, I say this to let you know if you don’t get answers from private to keep going! Be persistent if you know something is wrong. Regardless of what the diagnosis is, it is right that you get the answers and help you deserve!!

I am now getting the help I need and have been offered treatment. My GP was still hesitant to refer me this time around and said was likely vitamins. In the end I actually managed to get my NHS referral via opticians which I really hadn’t expected and didn’t know was possible!! I had to specifically ask for an eye health check as was experiencing problems and not a standard eye test which I already had twice in the few months leading up. They sent me to an ophthalmologist at the hospital who then passed me to neurology. I got seen and in the system and the rest is history.

Wishing you all the best in getting answers soon and the help you need!

[Cavworld]

@er15 I went down the private route with an NHS MS specialist to start.

To be fair, this wasn’t because my GP wouldn’t listen to me though, their hands were tied by being unable to order scans direct or refer immediately.

Upon all the results, I then got transferred to him on the NHS, he held an MDT meeting and I got seen by the nurses within 3 weeks and on treatment within 4 months. (Seeing the Neurologist on NHS is a different problem as the backlog is ridiculous).

In my area, all routes are sent via physio and orthopedic in the first instance and then after several months then they “could” suggest it’s neurological and then recommend that the GP refers to Neurology which then occurs a very long waiting list, if indeed they accepted the referral in the first instance.

I appreciate this isn’t financially viable for everyone and I did have to scramble to find the funds but to be honest, I still believe I would be on the waiting list now after 2 years (orthopedics did advise it was most likely neurological) if I hadn’t taken this route.