Pain relief and timescales

Everyday living
1

Hi all,

I have had the most awful pain in my legs for about 11 weeks now. It doesn’t get any better. At first it was diagnosed as sciatica but now my GP is convinced it is MS. A lot of what she said fit, and actually looking it up I have a lot of symptoms which she didn’t even mention.

Anyway, I’m waiting to get a scan. Firstly a scan of my spine and hips since this is where the pain is, to rule out any other reasons, then following that an appointment with a neurologist. She marked it as urgent and was very concerned - actually very upset for me. I’m mentioning this because usually GPs tell you to take a paracetamol and go away!

So I know that anything within the NHS can take time. Can anyone give me an idea of how long it takes to get a first appointment? My GP asked if there was any way I could go private.

And in the mean time, is there anything I can do to help the pain? I’ve had naproxen, co-drydamol, paracetamol, aspirin, ibuprofen… nothing even touches it. Should I try and rest them? Exercise? Should I try stretches? Hot or cold? Avoid extremes of temperature?

I have a dog and she needs a walk at least twice a day, honestly I’d rather not but if this is how it’s going to be from now on there’s no point in getting someone to look after her for, say, a week if it won’t make a difference. Is it likely this might die down on its own? Or could this be it?

I’m trying not to be too dramatic here but I’ve been crying from the pain most days and am so snappy because of it which is really unlike me.

Hope someone can help,

Thanks.

2

Hello

What you should remember is that a GP is not able to diagnose MS. And it’s really quite irresponsible to suggest that it could be MS especially since you’ll only be referred to a neurologist once the scan of your spine and hips has ruled out other causes.

You may indeed find that some way down the line your GP is perhaps proved right, but until that time, if I were you,I’d try to put that suggestion right out of your head. Even if you have other symptoms that could be slotted into an MS diagnosis, there are many other diagnoses that resemble MS.

I think your GP would have been more helpful to sort out a way of either managing the pain or offering you some kind of painkiller. It’s really something we can’t suggest on this forum.

Obviously, if you want to follow your GPs suggestion and can afford an initial private appointment with a neurologist, then you’d need to find one in your area. If possible, see if there is a local neurologist who has both a private and an NHS practice. That way, if the neurologist wants to do some expensive testing (eg MRI), they could refer you back to their NHS practice for the tests.

Best of luck.

Sue

3

Hello, I concur with Sue. Your GP may be able to refer you to a pain clinic and sort out a better programme of pain relief.

In the mean time, if your GP has already referred you for an urgent MRI, mine only took two weeks, however it was a six month wait for the neurologist and so, as a result, I saw a private neurologist (£150). I was holding my MRI scans at this point for him to read (these would have been too expensive to be done privately).

I think that referral times can be a post code lottery, so I do hope that you are able to sort out your pain. Please be patient and try not no self diagnose. Eat, drink and rest well and gather round friends and family to support.

kindest regards Ali x

4

Hi Sue,

Thank you for your reply. I’m sorry, I should have been clearer. I’m not looking for anyone to recommend a painkiller but any other (non chemical) ways they might have found to manage pain, eg hot/cold, stretches etc.

My GP did offer a painkiller - Naproxen or Co-Drydamol, neither of which help.

Of course, it’s not possible to put it out of my head at this point, until it’s been ruled out. Which is why I was asking about timescales. I’m well aware that my GP cannot diagnose it herself.

5

Hi Patience,

Thanks for your reply. Two weeks, that’s not too long! And £150 for a consultation isn’t as much as I’d feared. I guess it’s the scans that cost the most.

I will ask the GP about the pain clinic.

I have had a lung condition all my life so I’m already fed up with doctors and hospitals. I’m used to pain and fatigue, but this leg thing really shocked me.

6

Viridian sunshine, if it is nerve pain, maybe a different approach? I am on quite a high dosage of gabapentin (there are other nerve blockers) and I know that there are plenty of other approaches out there, from cannabis to acupuncture?

PS. My name is Ali but my pseudonym on this forum is patience…chosen with good reason!! Warmest thoughts

7

Thanks Ali, I think I will try some of the cannabis paste that I saw recommended on here, and will ask the GP about nerve blockers. Thanks for your support.

8

Viridian, in 1981 I had the worse pain in my back and leg/hip it was horrific. I was told it was sciatica and boy the pain was never ending. I could neither stand or lay comfortably. I had 2 young children too and we were going to Kenya to live.

I had xray nothing showed up on it. BUT the doctor said it was sciatica.

I even had numb foot and tingling and pins and needles it was horrible all day everyday.

when i got to kenya i went to a doctor there and they did another xray and i although it never showed up he believed I had a slipped disc.

He put me in like a corset thing and i had to wear it for weeks. I know they sell more modern ones now lol, back support belts as my daughter has to wear one. (link below).

Now i have no idea if you have a slipped disc but if it is i can understand your pain. MS yes gives nerve pain but nothing like the pain i had with that in 1980 it was different.

Yes i have pain everyday with my MS but its nerve pain not the same.

Now why not try a back support belt and see how you feel with it. Also a HEAT PAD. They help too. When your sitting you can have it on your back.

I had my first MRI private in the uk for my MS.

You can get them done for example in the Cobalt Centre in Cheltenham. Believe it or not a part MRI scan cost me about 200.00 at the time. I saw my neurologist privately in TWO days from referral by my GP. TWO DAYS. It cost me about 90.00 back then obviously it has gone up I think i pay about 125.00 for half an hour now but WORTH every penny.

Ask your GP to refer you privately they usually give you the number of the secretary of the neurologist and they can organise you a visit. Its so quick honestly.

I feel for you really i do, when you dont know why your in pain, but i do wonder if you have a disc issue. If you have lung issues do you cough a lot? My husband had COPD and he actually coughed a disc out of place from coughing. Constantly coughing he finally put pressure on the spine from inside the body and got himself a herniated disc. He had to have surgery in the end to correct it.

I also think it was totally irresponsible of your GP to mention MS. When i started my journey in 2000 the word was never mentioned by my GP neither from the neurologist not really even though he kind of knew it would be MS he was struggling to actually diagnose me because i wasnt STANDARD in my presentation. He has since learnt that MS is a snow flake disease and we are all different. Mine started with eye issues.

I would seriously get a private appointment if you can scrape the money. I get invoiced for a month so you have time to pay them. ALSO go back to your GP and ask for Gabapentin or duloxtine, which is what my daughter has taken for her disc issues it helps the nerve pain. Also for 8.99 try a belt for when your walking your dog etc.

I hope you get answers and I really hope it isnt MS. good luck hunny.