I will try and keep this as brief as possible. 10 years ago, I suddenly developed balance issues, brain fog, vertigo and a constant fuzzy head. Had an MRI which showed lesions on my brain and neurologist prepared me for an MS diagnosis. Had a lumbar puncture after and they decided it was unlikely to be MS. Then have a current diagnosis of Vestibular migraine to explain the dizzy sensation.
Over the past ten years, I’ve developed the most excruciating muscle pain in my shoulder, neck and it’s now spreading to the other side. Nothing works, nothing gives relief and I’ve seen every professional going.
Over the last few months I’ve started experiencing numbness in my left hand and foot which can last a few days. I’ve now got it again and it’s the worst I’ve had it, on the 4th day now and it’s spreading up my arm.
My husband keeps saying they’ve ruled it out but it was ten years ago!? And there’s not one specific test? I’m basically looking for advice as to whether I should push to be seen again?
I’d be so grateful of any advice.
If I were you I would definitely be asking for a referral to a Neurologist again to have tests again to try and see what’s going on.
Don’t delay because the list of referalls is always long, take care.
Yes you should. Ten years is a long time and much can change.
Thank you for your reply! I’ve actually spoken to my doctor this morning and she wants me to go and get checked again. I have a blood test next week, then she said she will look at an MRI and refer to a neurologist. I have found a private neurologist who I can see in two weeks but I don’t know if I can still have the blood tests etc done on the NHS?
Well done for getting in touch with your GP and seeing a private Neuro is good but I see no reason why you can’t still have the blood test on the NHS. I expect the private Neuro will transfer you back to the NHS after his consultation.
Hope it’s good news for you.
I saw a private neurologist but had mri and bloods on NHS - private said its ms without results, NHS neuro said it wasnt…fast forward 3 years saw another neuro on NHS and ive now been diagnosed with SPMS…wish id listened to private neurologist!
Hi @DizzyDoris … I am pleased that you contacted your doctor and that they feel your symptoms are worth revisiting. Hopefully, on the back of the blood tests you will get a referral to a neurologist and a MRI. Let us know how you get on ….
Thank you all, my doctor ended up sending me to the hospital on Wednesday so I’ve got to have an mri in the next few days. The feeling hasn’t come back in my hand and arm yet but they keep thinking I’m saying I can’t feel anything from the outside? I can feel someone touching me but it feels like my arm/leg has gone dead and tingly? Any better way I can describe it? I have a private neurology appointment on Wednesday but I might delay it until I’ve had the results of my mri so I can go with all of the facts.
Hi @DizzyDoris, whilst hospital isn’t a great place to be, it is in terms of the MRI and any other potential tests. I’ll keep you in mind hoping that the MRI comes sooner than later and that you get results which indicate what is going on.
I do feel for you, when it comes to describing numbness, buzzing etc it can be difficult. I think the only ones that understand are those on this forum. Take care
Yes, you should. You have some serious problems mate, and you should visit the doctor more regularly
I’ve been back, had another mri and more lesions and demyelination found. Just waiting for my neuro to confirm the diagnosis.
@DizzyDoris - It’s possible MS was dismissed 10 years ago because the MRI possibly showed NEIDA (no evident inflammatory disease activity). I am in the same boat - original lesions showing, no new ones yet my symptoms are steadily worsening. A form of PPMS, there is currently no treatment other than palliative care. The only recognised treatment for PPMS, Ocrelizumab, is apparently not effective on NEIDA cases.
Have a read of the MS-Selfie articles by the inestimable “Prof G”, with particular reference to the condition he has coined as “Smouldering” MS.
In fact, read all of Prof G’s articles - he is surely the best commentator on the state of MS treatment and ongoing research in the world. It may help you identify where you fit into the MS scene.
Finally: strange that the LP missed your diagnosis. Before MRI, LP was the go-to determinator for MS.
Thank you I’ll have a read.
My neuro said that a small percentage of people can have a clear LP and still have a diagnosis. Ten years ago was my first relapse so don’t think I’d had enough by that point. I’ve dismissed lots of symptoms over the past ten years but the loss of feeling and tingling in my left hand, arm and foot took me back to the doctors.
Sorry to hear there is no treatment for you.
Well, that’s a bit of a shocker even though you don’t know for sure yet. I am sorry that you haven’t had the miraculous ‘all clear’ that we all secretly hope for, however unlikely. Warm wishes to you.