Had a brain and cervical spine MRI on old 1.5 scanner, no MS specialist at my local hospital. Not seen Nuero since he sent me for MRI, got results from Gp. Gp said she was surprised MRI was clear as both her and Neuro thought MS. Asked her what other testes they could do as something must be causing these symptoms. She said she had done all tests she could and she thought it was MS, she had had a patient before with symptons a clear MRI and then a few years later lesions and a firm Dx of MS. When I saw Nuero he said we will do MRI first and then do a LP, Gp wants me to push for LP, as now having problems with my legs, only arms before. Just wondered if anyone else had bean in the same situation? Also worried that if I do have the LP, and it shows something they will still dismiss me as MRI clear, Gp thinks I should have annual MRI’s and Neuro should keep me on his books. But is there any point if they can’t do anything for me?
Hi there,
I dont want to duerhwe complicate the situation but I was utterly convinced I had MS as did GP. Brain and cervical MRI’s have come back clear. Neuro thinks I may have connective tissue disorder, but it isn’t showing up in bloods.
I don’t think my neuro doubts how ill I feel, he was lovely and has kept me under review and says sometimes these things evolve.
I don’t want to advise you over to whether to go for LP, I just want to warn you of the possibility of not getting a diagnosis. I’ve been off work nearly a year and I’m not well enough to go back yet…Poll on here is still hoping for a dx after 14 years.
If limbo isn’t bad enough, you feel cra* with no explanation…
I’m sure I have read people on here have been diagnosed with a clear MRI, if all other tests pointed to it. Sometimes it takes a while. How did your clinical exam go? What were your reflexes etc like?
My reflexes are fairly normal, my scan last December was clear and my neuro doesn’t do LPs, so I’m cast off at the moment as functional (as so many others in limboland). I’m 99.99% certain it’s not functional and something will show itself eventually. It’s a hard one because it looks as if we want to have MS!! We certainly don’t but we know something is quite wrong and need clarity on what. My GP, like Gillian’s, was also convinced it’s MS.
Good luck in your search, I’d personally take any tests offered.
Dx
Thanks for that. I went to see Rheumatologist again last week as I have Raynards and have now re looked at report, I have had blood tests for ctd, but Rheumatologist did not say anything about results, they thought it was Lupus but bloods said negative. All they said was we will see u in 6 mths when u have seen Neuro and been to eye clinic again! Eye clinic said c u in 3 mths when u have seen Nuero, your eye problems are not caused by a muscle problem, probably neurological! Getting fed up now
Debc my reflexes are brisk? Also had vision problems but not ON.
Hi Deb and Apple…I think it’s very difficult to diagnose these issues …I too am having horrible eye problems and I think its also difficult when symptoms overlap between neuro’s and rheumatologists. Apple my bloods are clear for Lupus too but that’s what they suspect and I feel awful in my self.
Sadly, my neuro tells me they do get people where it takes years to clinically diagnose so I have kind of almost drawn a line under the whole diagnosis debate and am just going to try and get as well and fit as I can and enjoy life as much as I can.
I wonder if us guys will be batting round here for ages? we can become great friends
(Deb…really not sure what functional means…??? )
Hi I just wondered if lesions had now shown up on your MRIs? Thanks