Matter of Tumefact!

Updated: Apr 17, 2019

MS is referred to as a snowflake disease because no two cases are the same. Although there are a handful of common symptoms that are associated with MS overall, not everyone experiences the same symptoms at the same degree. At the same time, there are different forms of MS that people experience ranging from relapsing-remitting to primary-progressive. There exists a few rare cases in the middle that often go undiagnosed or misdiagnosed, one of those being Tumefactive MS.

This is not my actual MRI, but mine looked very similar to this one. Tumefact MS is characterized by a large mass on the brain that is visible when enhanced during an MRI. The mass, or masses, can be easily confused for infection, cancer or more commonly, brain tumor, hence “tumefactive”. Brain lesions are a common tell-tale sign for MS with the scarring being small in size. However, with tumefactive MS, brain lesions are visible at two centimeters or larger, making them subject to misdiagnosis. It is often hard to diagnosis tumefactive MS because the symptoms are similar to other health related issues such as an abscess or a stroke. Here’s where it gets tricky:

Although tumefactive MS shares similar common symptoms with other types of MS, it also comes with specific symptoms that may be different from the rest:

  1. Headaches/migraines

  2. Seizures

  3. Aphasia/Apraxia

  4. Loss of senses

  5. Mental confusion

When I first began seeing my neurologist for MS he recommended we halt and minimize the inflammation and activity by starting an IV corticosteroid treatment. I received my treatment once in a medical setting where nurses administered the drug to me under supervision, and then I was sent home with three more supplies of treatment to do on my own until it was complete. This procedure is usually the first step in controlling MS, however this doesn't work for everyone. There are the few who's illnesses remain active after the steroid and are then advised to replace their plasma with a donor plasma as a second option.

While TMS is considered it's own thing, there is a high possibility (if not already) that it will develop into a relapsing-remitting for of MS, or RRMS, where periods of exacerbation and healing are likely. Although there isn't a cure for MS, it is certainly not a death sentence. In fact, most people diagnosed are still expected to live a normal life expectancy (with health conditions considered). I have been fortunate enough to live a life with minimum physical complications and I must say, I'm quite thankful for my diagnosis because it pushed me to seek out something that I love and that keeps me active in a fun and light-hearted way.

I hope this gives you some insight about MS and the hidden rare gems that often go untalked about. #ThisIsMS



©2019 by Myelin Moxi.

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Dallas, TX, USA