I’m new and am hoping to get some help.
I was tentatively diagnosed in 1994 after a bout of optic neuritis left me blind for 6 months. My neuro told me I was too fit and healthy to risk a lumbar puncture and that I should carry on as normal, forgetting all about MS until symptoms get worse. My medical report said I hadn’t been diagnosed with MS.
So fast forward to several years ago when odd symptoms, but not ON started to appear - feeling like cold water had been tipped down my leg, bladder problems, tingling/pins/needles/pain/fatigue etc. I was sent to a rheumatologist who diagnosed Fibromyalgia.
A few years ago I broke my ankles in a car accident. Since then I have been in excruciating pain 24/7 and my insurance insisted I get a private MRI done to see if I had CRPS. Instead of that diagnosis, I get a call from the neuro saying he recommends me seeing a NHS neuro as it looks like MS. The report reads as follows:
"T1 and T2 sagittal, T2 FLAIR and gradient echo axial and T2 coronal sequences were performed with a diffusion weighted scan. Report:
There are a few focal T2 and FLAIR hyperintensities within the white matter. There is a subcortical lesion, several deep white matter lesions and two periventricular lesions, the largest being adjacent to the frontal horn of the right lateral ventricle. The diffusion weighted scan is normal
A long FOV T1 sagittal scan was obtained with short FOV T2 sagittal scans through the cervical and thoracic cord separatelywith limited T2 axial scans.
Normal vertebral body alignment and marrow signal. There are minor degenerative changes withing the cervical spine from C4 to the T1 level but these are not causing any significant thecal or neural compression. There are multiple T2 hyperintensities within the cervical cord at the C5 level. There is a further ill-defined area of increased signalat the C7/T1 level, againin the left side of the cord. There is no cord compressio and the craniovertebral junction is normal.
Conclusion: Reviewing the MR brain and together with spinal cord imaging the overall appearances are highly suggestive of an inflammatory aetiology and MS is the most likely diagnosis."
I’ve been asked not to mention this scan and the findings to my GP or others within the NHS as ny insurance company is trying to get the guy who hit me to pay up, but I’m really confused as what to do.
I saw my neuro privately before this scan was even in the works as the pain I was in was awful and I was desperate for help - all my GP was doing was upping painkillers. I just wanted to know what was wrong. The neuro did the physical test, checked my eyes, hummed at my upward plantar reflexes and again when I told her my history and suggested I think about having a MRI as MS could still be the most likely diagnosis. I was offered the option of a private scan there and then or go away and think about it and possibly be referred via NHS, which 18 months later and a bit of a fright with my optician writing to my GP suggesting a MRI, is what I’ve done.
So, a few months back, I saw the neuro again, who upon doing the same tests and having the same reactions from me, said I’d be put on the list for a MRI, but MS is unlikely.
I’m so confused. Will this MRI (scheduled for end of June), show anything? Do the results of private MRIs show more than NHS MRIs and will I be labelled a “time waster” (I have been on several occasions as my symptoms have been so all over the place, plus I don’t think I can explain them properly - I keep forgetting to say half of them!)?
Do I have MS or do I have something else that comes and goes, causing the same neuro to give me different opinions (albeit 18 months apart)? I know I have the criteria for Fibromyalgia and my rheumo is happy with that diagnosis, but it really doesn’t cover half of what I’m going through, and I’d really like to know what’s going on, if anything - it might all be in my head (dunno if that would be a good or bad thing!).
I apologise for the long and confused first post - I just don’t know how else to put it. Please, if someone can help - particularly if someone can confirm that the MRI I had done will likely be similar to the one I’ll be having done (just so I don’t think I’m going mad/time-wasting etc.), and that it won’t miraculously come back clear - I’ll be very grateful.
I just want to know what’s wrong with me.