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Sjogrens Vs MS

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!

Moyna z

Hello Moyna,

The one thing I have learned is that doctors do not like you to dx yourself. You say you have Lupus in the family, so there is an option but may I sinccerely suggest that you stop trawling the web to self dx, as very often there is incorrect information on there. I do wish you luck with your next appt’. Hope it goes well.

Janet

x

Thanks Janet, I know you are right. It is just I am worried that I have something else other than MS or Radiation Myelopathy which is treatable if delt with earlier. I know someone who is wheelchair bound now because he was diagnosed with ppMS for 10 years. In fact his problem was pernious anemia and if he was treated appropriately 10 years ago he would still have the use of his legs. Too late now! I feel that if I only have one lesion and a clear MRI and the doctors cant diagnose MS then they should be trying to find another possible cause, rather than wait and see. My GP wont do any of the tests I ask unless the consultant suggests so.

I went to doctors and casualty with my 12 year daughter 6 times in 5 days with stomach pains. On all occasions I was told it was wind/constipation. On each occasion I suggested appendix because as a child I had experienced it too (with vivid memories). She was in agony. In shear desparation I took her on a Sunday morning to a parent I knew from school who was a surgeon. We were rushed to hospital and were only just in time to get it out before it burst.

Moyna

From memory, I think you largely recovered from your attack? If Sjorgens mimics PPMS, that would rule it out I would think? Kx

Hi Karen, I have recovered from the severe fatigue and a multitude of sensory things. It is just the spasticity is progressively getting worse. The attack was nearly 5 years ago, within 3 months of it I was back playing 18 holes of golf and went skiing too. One year later I was still playing 18 holes and went skiing. The next year I went skiing but found I could only play 9 holes of golf. Had scans etc myelopathy was seen. I seem to have a such tight quad that I walk with a stiff knee gait. I have to concentrate to lift my foot up so that I dont trip. Neuro physio says it is increased tone and my strength is still pretty normal. I try and walk very slowly for an hour a day with the dog.

Thanks

Moyna x