Demyelination and Connective Tissue Disease



Demyelination and Connective Tissue Disease

I’ve been having some odd symptoms over the last couple of years. It started with numbness, tingling, crawling sensations on the left side of my face, neck and chest. Intermittent blurry vision and occasional double vision sent me running for eye drops frequently. Then I noticed at times I my memory was very poor, and I started falling more often. Not just falling, but frequently walking like I’d had a few too many drinks. My balance was terrible.

When I saw a neurologist, he was a little concerned that they symptoms could be from several things like Multiple Sclerosis or a stroke. He ordered MRIs of my brain, neck, and t-spine.

The results came back with areas of demyelination in the brain, but the lesions didn’t look like typical MS lesions. Since the symptoms continued to worsen with the development of intermittent numbness and tingling in my lower leg, feet, and hands, the neurologist sent me to an MS specialist.

When I saw the MS specialist, she reviewed my MRIs and assessed me. She diagnosed me as having demyelinating disease caused by my connective tissue disorder. Since the lesions are small, she felt they were from the connective tissue disease and not from the Enbrel I’d taken for many years.

Since I’d taken Enbrel for around fifteen years, the rheumatologist stopped it when we first started looking at the neurological disorder and he put me on Orencia. The MS specialist found literature that Orencia can worsen demyelination, so the neurologist has taken me off that.

I repeat the MRIs in a few months. If there are new areas of demyelination, then the MS specialist will start Rituxan, which will also help with the connective tissue disease.

I have seronegative rheumatoid arthritis, the rheumatologist doesn’t necessarily agree that the connective tissue disease is causing the demyelinating disease, but whether or not the two are related, the treatment will be the same.

I ignored many of the neurological symptoms for several years because I assumed they were related my prior cervical spine fusions.