MS, Obesity, & Aging

My MS likely began in 1985. I worked as a field biologist, and I developed a rash and debilitating fatigue. I had a very high titer of EBV but no other clues. I recovered within 2 weeks and went back to living life. I had a few minor fatigue episodes but was okay until summer of 1999. I had fatigue & uveitis and went to 4 or 5 specialists, including an MS neuro. No diagnoses.

A family history of MS

My sister was diagnosed in 1998, her daughter in 2000, and I was confirmed in 2004. I went through 3 or 4 treatments over the next few years, along with a few rounds of IV steroids. I settled on Copaxone and found work on computers in research biology. The next 10 years or so went along, I maintained a work schedule, but fatigue and heat sensitivity kicked my ass. I was very fortunate to have a neuro who listened and helped me navigate MS.

I decided to switch DMTs

In June 2015, I had my first series of Lemtrada infusions, 5 days 2015, then 3 days in 2016. My MS has been stable ever since. Unfortunately, I developed autoimmune thyroiditis in May 2016, a known side effect of Lemtrada. At that time I also started having tachycardia after minimal exertion. I spent the next three years going from doctor to doctor. All tests good. No reason for my heart racing. Of course, as my heart rate (HR) went to 115 or so, my MS fatigue would kick in, so I became less & less active and more & more frustrated.

I found something that truly helped me

At wit's end, I tried a program through work called 2ndMD Lifesavers! They were able to compile all my records, tests, notes and put me in touch with a doctor who specializes in Postural Orthostatic Tachycardia (POTS). Through that interaction, I was able to have my cardiologist prescribe a beta blocker. I still have spells of tachycardia, but easily controlled. Hardest thing has been getting back into a more active routine. I have always been obese, but now I'm weak and obese. 99% of doctors only see a fat, older woman complaining of fatigue. I know if I lost a significant amount of weight I would feel better, but it feels like Sisyphus pushing the boulder up the hill, over and over. Getting older doesn't help either - one fellow at my neuros office told me "well you are in your 60s, so there's not much we can do for you anymore except maintenance."

It seems to get harder finding solutions

What?! I've always faced my MS a a problem looking for solutions but lately it's been more and more frustrating to find those solutions. I am starting a new routine tomorrow with 5 or 10' of low impact exercise. I just need to stick to it and take it slow and improve bit by bit. MS is a real pain in the ass! Frustrating and infuriating, but I'm still in the fight!