Hi I put this on New Diagnosis Forum and PPMS forum but nobody seemed interested.
Being in limbo I find that I am continually trying to self diagnose. I seem to suffer only from spastic paraparesis in right leg. I have one cervical cord lesion and a clear LP. First neuro diagnosed delayed radiation myelopathy. The second neuro says RM is impossible and thinks probable MS. I have been left as a wait and see what happens case. What has annoyed me is that I have not had extensive blood tests to rule out other possibilites. Only B12 which I asked for myself. My next appointment in 3 weeks time I am going to ask for extensive tests into Lupus (because it is in my family) and sjogrens syndrome.
I found this on the web today:
“A diagnosis of Sjögren syndrome myelopathy requires a high index of suspicion and should be considered predominantly in women over 45 years of age with progressive spastic paraparesis and abnormalities on spinal cord MRI, even with negative anti-extractable nuclear antigen antibodies (Ro/SS-A or La/SS-B) (Pericot et al 2003). The presence of autoantibodies against fodrin also helps in differentiating myelopathy in Sjögren syndrome from primary progressive multiple sclerosis (de Seze et al 2003). A positive test has 70% sensitivity, 86.7% specificity, 63.6% positive predictive value, and 89.6% negative predictive value (de Seze et al 2003)”.
Sjogrens is also linked to lymphomas (I had hodgkins lymphoma) and premature ovarian failure (I had this too at 38). Raynauds and carpel tunnel syndrome are common with sjogrens and I have those too.
Common symptoms of it are dry eyes and mouth which I think I am ok, although I had to stop wearing contact lens a few years ago because they were starting to stick to the eye. Also my dentist did ask me once if I suffered from dry mouth.
Another article I read indiated that in a study of people with ppms 20% were misdiagnosed when it should have been sjogrens and too much damage had been done to rectify the problem
I know Doctors hate patients to self diagnose but I am getting fed up and will be going armed with info!