So very true and well said Lady,

When I had my first go around with TM starting in 1978 then again in 2000, the physicians and specialists concentrated on the symptoms of ON, regional enteritis and cardio-pulmonary irregularities because the neuro-muscular ones did not involve the typical numbness pattern. In 2000, the severe abdominal/thoracic spasticity that I experienced was attributed to GI and possibly pericardial inflammation. At that time the visual disturbances and lower body spasticity developed after the abdominal/thoracic symptom onset but were not continuous over the next 18 months. It took nearly two years to recover from the episode and it left me with residual lower body spasticity as well as visual problems. That bout was one heck of a weight loss program (not that I needed one), since I had already had part of my intestine removed due to regional enteritis in 1978. For a while there it was looking like I would need TPN because of the extreme weight loss due to malabsorption and subsequent malnutrition.

Only recently has it been postulated that the regional enteritis, digestive and thyroid problems in 1978 were likely due to TM because there was optic neuritis affecting one eye just before that. At that time, no one put these things together under the diagnosis of TM; probably because back then it wasn't recognized as it is now. It was the same in 2000. No one thought to consider TM at that time; yet with the information available now, I expect that the diagnosis of TM would have been made fairly quickly.

Currently it is likely that the diagnosis of RRMS will be changed to Devic's disease because at least 3 repeating patterns of ON and TM occurring roughly at the same time has emerged over the span of 34 years. I have been experiencing those two things again for the last 18 months; this time along with cognitive dysfunction, and although symptoms come and go, there is a cumulative decline in function of the nervous system. Thus a re-evaluation has been undertaken by the neurologist who will make use of diagnostics and information that were not available even 10 years ago.

When one considers the potential for atypical forms of Devic's disease/NMO, MS, TM and ON, as well as individual expressions of demyelination that might occur in just these, it becomes a bit overwhelming to establish a conclusive pattern of symptomology that provides for a definitive symptom pattern or diagnosis of any of them.
Many thanks to the researchers who continue to try because it must be just as frustrating for them as it is for us to make sense of all the newer information and guidelines.

As it appears now, it seems that TM, just like ON are being be perceived as symptoms that may indicate newly named syndromes and/or particular forms of demyelination; all depending on individual patterns of occurrence and recurrence. With new information coming forward in the fields of neurology and demyelinating diseases, it isn't surprising that for those of us who have had symptoms for many years, that re-evaluation and changes in diagnosis are being undertaken. Hopefully as research continues, better potentials for treatment will also be forthcoming.
If only for that reason, I think that it is important to continue to undergo diagnostic evaluation because the results may provide more study information for the benefit of those newly diagnosed with demyelinating disorders.

Similarly sharing our individual experiences may provide additional information to researchers and those affected alike.
Thank you so much to all who do so.

With love, Erika