Considering going Private for Diagnosis - Want Advice

New diagnosis and before diagnosis
1

Hello.

Im a 28 year old Woman, and I’m looking for some advice. Excuse any spelling mistakes, my spelling has gotten worse recetnly

About a month ago, I ended up in A&E for the evening because my right arm wouldnt stop spasming and my right side, in the liver area had a very painful and dull area. While I was being checked out I noticed my eyes were in A LOT of pain when I was moving them from side to side, up and down, and had to shut them for a little bit.

Considering to that doctor, the muscle spasms in my arm and my pain was constipation.

A few days later, Im in ALOT of pain with my hips, and I could barely walk, along side as my torso feeling sore, like i’ve been hugged very tightly, as well as slight spasms in my arms still. So I got a telephone constultation at my doctors, and he ask to see me as soon asap, after going through a bunch of tests, he said that he would refer me to a neurologist, because he was pretty certain I have MS.

This isnt the first time I’ve been told I might have it, My opticians was the first one to suggest it, after talking to one of the nuerologist from King’s College. She phoned me up afterwards because of eye pain while moving my eyes, and slight double vision.

in 2017 I had seen a nuerologist in St George’s Hospital, Had an MRI, and got a letter from the neuroradiologist, saying I have “Small foci of signal changes with in the white matter of both cerebral hemispheres” but never got followed up by the neurologist or the hospital, and even when I tried to chase it up, the hospital never helped. I tried to get my GP around the time to get me to be seen again, but she never let me, she would always put me on b12 and folic acid [Admittedly, i’ve had bouts of low b12, but my most recent blood test is very normal for b12]… even when I was coming in with bad tremors.

Coming back to this year, it’s got to the point where I can fall over standing up, I cant really walk 200ft without feeling worn out and in pain, even with my walker/rollator. My back is constantly stiff and in pain, Im still in pain in my side, I get random points of numbness all over my body [my hand and face being the worse], my spasms have been on and off, [I had one where i burnt my hand so badly while putting something in the oven I heard the skin sizzle] and worse when im trying to sleep, I have bladder problems, if my face isnt numb, its so painful I cant function, My visual space is kinda bad [ I will walk into door frames, bump my head alot], I’ve had to start using disability cuterly, and extra handle for my hot drinks because my hands cant grip that well or they will jolt open.

The main one that upsets me is: speech and memory. I cant find the right works, slur, stumble over my words, stutter… like my brain is crashing for a moment. and my short term memory is shot to bits…

and all of that has been getting kinda bad over the last month.

While I have appoinment for my local hospital for September, I dont know if I can wait… and I dont want to feel so bad… and I want your opinion on if I should go private, and your experiace. Im honestly kinda scared of doctors… because i’m always scared they are not going to take me seriously.

I hope I dont seem like im wasting your time…

2

Hello…mmm a lot going on there.

September isnt that far away and what with covid slowing down clinics, I`d wait for that appointment. Perhaps a private one wouldnt come much sooner…worth asking though.

Boudsx

3

I’ve sent a message to a private consultant, just to see his availability and prices. However I am thinking about sticking with my NHS appointment, it’s just I understand September isnt that far away… I just want to understand why I feel so bad…

4

My husband is management at a private hospital and they haven’t quite started up services running as they were yet. THey are still contracted to provide nhs waiting list services for operations right now and once up and running on the private side perhaps there will be a backlog.

I’m waiting for a diagnostic test on the nhs and had enquired about going privately at his hospital, but in all honesty there is little point just now.

I know it is very very difficult, and I am in a similar position to you, but just try to sit tight if possible.

xx

5

Looking into the prices for the consultant I was suggested, my fiance really doesn’t have that kinda money for scans and tests. And I can’t get Bupa because the doctor has already suggested its probably MS. I’ve since looked up my NHS Consultant and he has really good reviews about being caring and listening, so I’m not AS scared… I’m just worried about my health at this point.

6

I paid for a private appointment after having scans done by NHS - he diagnosed PPMS but then referred me back to the NHS - who then went on to diagnose RRMS. The private appointment was not recorded on my NHS notes so the NHS Neuro was not aware of the original diagnosis - and to be frank she wouldn’t be interested anyway from what I can see of her. Sadly therefore even going private did not give me a final, definitive answer to where I am at with this illness. I am now awaiting the results of my yearly scan - a year after diagnosis but decades after first symptoms - I am finding it really hard to concentrate on anythingwhile I wait for the results even though deep down inside I know that it probably won’t make that much difference to my treatment (zero) or anything else apart from my own resolve to try to life as normal a life as I can. Good luck.

7

Im sorry about what you’ve had to go through so far. :frowning: I hope things work out for you, in which ever which way.

I’ve decided to just wait to see my NHS neuro at this point, I think it would be unfair for my fiance to pay £2000 [what i was quoted] on me anyway…

I’ve heard my neuro is a very kind and listening neuro and is a MS specialist, which is good to know. because I found out that my last nuero, the St Georges one was just a Locum, and not a MS Specialist, so… that might of been why i was treated so badly…

8

Hello

It sounds to me that you’ve made the best decision. The trouble with seeing a private neurologist is not the cost of consultations, but the cost of the tests. An MRI costs several hundred pounds and everything else just adds to the cost. So it isn’t a surprise that you could spend £2000 and still not have a complete answer.

You are definitely in the right place if your neurologist is an MS specialist. Don’t forget though that s/he will be looking at you, taking a history, doing a neurological examination and looking to see firstly whether what ails you has a neurological cause, and only after that (and sending your for diagnostic tests), exactly what is causing your symptoms.

What is a good idea in the meantime is to write yourself a diary of your symptoms. Your initial post has the bare bones of this, but you could write more of a timeline, exactly what has happened and when. Detail what got better and how long that took. Also, what makes you feel worse (or better). This will help enormously when you see the neurologist.

Best of luck, if you have further questions in the intervening time, just post them on here. We’ll do our best to help.

Sue

9

Hi - I’ve recently switched from nhs to private and have found private to be a million times better so far. By better I mean faster and more thorough tests, the nhs wouldn’t do full spine mri for example and also said no to a lot of blood tests. I am hugely fortunate to be covered under my husbands medical through work, as someone else said the cost of the tests are astronomical. However if a talk with a consultant would put your mind at rest it could be worth paying a consultantation fee just to talk things through with a neurologist.
If you do decide to stick with nhs keep emailing them! I was on their case throughout lockdown to get the results of a brain mri I had just before lockdown kicked in. It took persistence but eventually they replied with my results and arranged for me to speak to my consultant on the phone. It’s horribly stressful having to constantly chase them but it did work.
Good luck with whatever route you choose. Hope you get some answers soon xxx

10

Hi again. I think you have made the best decision in waiting for the September appointment.

I originally went private, due to there being a 10 month wait on the NHS to see a neuro. I paid £200 way back in 1998/9.

After seeing him I then switched to NHS and the nurses treated me with contempt when they knew what I had done!

All this lead me up a garden path…no firm diagnosis but a possible PPMS one. Then a few years later it changed to a completely different condition HSP…that was quashed not long after that.

So for years I had no idea why I couldnt walk and needed carers for most things.

Finally I got to see a wonderful neuro at The Walton centre Liverpool last year and got treated with respect and great interest.

After 22 years, I found out I have Spinal PPMS.

I hope your wait isnt anything like as long as that!

Take care.

Boudsxx