possible MS help needed please

[mrsdarcey78]

Hi I am 39, I have had problems for a long time with symptoms. I was diagnosed with fibromyalgia in 2004, underactive thyroid in 2005. I went to see my optician in 2016 and she sent a letter to my GP asking them to refer me to the hospital due to optic neuritis. I eventually got to see a neurologist at the hospital, who referred me to a MRI, she was a trainee and didn't do any physical tests on me. I had to go to a open mri as I was so scared of the usual one, I was shaking through out and they couldnt do the metal injection. the mri incidentally found a angiomia but that was it they said. I didnt have any scan of my spine or a lumbar puncture. since then my symptoms have got worse. I am losing my mobility and powers in my limbs. my memory is gone. bladder accidents, blurry vision, painful ankles and wrists amongst other things. after nearly 2 years the GP had finally referred me to see a rheumotologist the wait for that is now 16 weeks from now. has anyone gone private for a diagnosis, how much did this and the testing cost? can you recommend anyone?. I have been in so much pain that I have though of just going to a and e, but worried i will just be told to go back to the GP again. thank you for reading this. x

I went private with Dr Rees at the National nerology hospital in London (£280) - however, I took my NHS MRI scan (just brain) with me. A couple of physical examinations and a look at the scan and he told me I 'most likely had MS'. He offered to see me under the NHS which meant getting referred back. It took a long time for appointments to come through..

Trouble is with MS is that the process does take along time.. and one visit won't diagnose you.

Hi thank you for the reply. Did the nhs day you did or didn't have MS when you had the original MRI or did the private doctor say that when he saw it afterwards? Thank you for the reply x

My story is a little complicated as I didn't suspect MS at all and only had the MRI for fits I'd started having. I felt the NHS wasn't doing enough (some days I was having 4 fits a day). The first NHS doctor was a stroke specialist (wanted to rule that out connected to the fits) so he saw the legions but couldn't comment as it wasn't his area. Was told id be refered to a Neroligist. At this point I'd had enough and when private. He looks at the scan said I had epilepsy and MS (MS caused the epilepsy) .. put me on epilepsy medication and I haven't had a fit since that day. I had my answers.. and I've gone back to the NHS.. but it's a lonnnng process.

I saw the private guy in sept last year. Got officially diagnosed with MS in March (no lumber puncher)...and I'm still waiting to see the MS Nurse and start the treatment I have chosen. It's likely to be Sept.

If you do have MS it sounds like a fair few relapses...and I'd be wanting to take DMDs as soon as possible.

It's such a frustrating system. If you can afford it is go private - at least to have your original MRI looked at again.

Hi,

I have very similar symptoms to you, I have had tingling and weakness in my legs (clinical muscle weakness as confirmed by my neurologist) for a year, fatigue, pain and also bladder and bowel issues. Among other things.

I have had an MRI of brain and entire spine which was normal.

Neurologist said normal MRI, no lesions, means it's definitely not MS. Even without contrast metal dye, lesions are usually picked up. Contrast only illuminates 'active' lesions/makes them brighter.

I have had every blood test possible and only thing is very low vitamin D. Have you been checked for vit D? Low vit D can make you very weak.

I am taking high does vitamin D, and amitriptyline for the pain. Both are helping me feel better.

I have walking problems too and am seeing a neurophysiologist/specialist physiotherapist. She said sometimes there can be an issue in the functioning of the nerves, like a software problem not a hardware one (like MS). So she said I can do exercises to 'reprogramme the nerves'. This can have similar symptoms to MS etc. We're still waiting to see if that improves my walking. I feel better from it and I would definitely recommend physiotherapy.

I didn't feel satisfied with my diagnosis too tbh, but I was advised against going private by my experienced and lovely Neurologist as he said a private clinic won't pick up anything more on MRI. So I am not sure if anyone else looking at you MRI will pick anything else up (especially as it's pretty clear)? A radiologist and neuro would have looked at your MRI and they are unlikely to have missed something like MS. I am not saying don't go private, but it may not be worth the money (unless you have lots of money).

However, it does sound like you need a second opinion from a better Neurologist so you can at least have a physical exam. Doesn't the NHS patients have the right to second opinion? (I do in Scotland) I would look into this before going private.

I think it's good you are going to a Rheumatologist as you may not have MS, as even Lupus can cause muscle weakness. It's a rubbish wait though.

Goodluck with it all, I understand how rubbish you feel. I hope you can get more help as it doesn't sound like you are getting enough support from the healthcare team x

Hi mrsdarcey78 and all,

One condition that I am familiar with which has similar symptoms to MS is vitamin B12 deficiency. The easy way to check if B12 deficiency is to blame for your laundry list of symptoms is to buy a good 1000 microgram supplement and take 1 a day for a week or so. If you suddenly feel very different, often better and worse in different ways then B12 deficiency is worth a follow up.
However it is possible to be borderline so you pass the B12 test but still suffer from a deficiency. Of course if you have taken any B12 supplements that will influence the test.
An interesting things about MS is that it correlates to latitude and some suspect that low vitamin D may make MS more likely. This won't help you if you already have the disease but for Brits it is probably worth it for everyone to take Vitamin D during winter when sunlight is insufficient to produce enough.

My first post!

You say you've been referred to a rheumatologist. Did you mean neurologist? Rheumatologists don't deal with MS so if you did mean that, then your GP isn't suspecting you have the latter.

Hi @mrsdarcey78 Did you ever get to the bottom of this?