What Next?

In some ways a diagnosis of MS was a relief. I finally had an answer to the myriad of symptoms, aches, pains, and “what the hell’s” I was experiencing. But now I had an incurable disease. What do I do next? I was given prescriptions for drugs that would treat symptoms I was experiencing such as spasticity in my legs, bladder issues, and nerve pain. 

The overall issue, however, was what could we do to stop the progression of MS? There are quite a few DMD’s (disease modifying drugs or DMT’s disease modifying therapies) on the market for Remitting Relapsing MS. These seek to reduce the frequency and severity of flares or exacerbations. They range from subcutaneous (under the skin) injections or intramuscular (into the muscle) injections to oral medications to infusions. You can find a full list here. It is up to you and your doctor to decide where you’d like to start. I strongly recommend doing a DMD because progression can be slowed.

I have tried almost every version of a DMD and unfortunately none of them worked for me as I progressed from RR MS to SPMS. There really aren’t any treatments for progressive MS, although research and clinical studies are making advancements. My neurologist and I discussed them and she prescribed 2 for me. Fingers crossed!

My MS progression began with breaking my ankle in 2010. The trauma, along with the sedentary months ahead, brought upon my most serious exacerbation to date. Once my ankle was healed and I was diagnosed, my mobility went downhill. I started using a cane regularly then moved on to forearm crutches and a scooter. I am now in a power wheelchair. I don’t walk anymore. My legs are heavy and my feet are like bricks. I exercise them but need to remind myself that MS is a neurological disease not a muscular one. I sometimes feel that I could have prevented all this. Could I have? My head says no. My heart… well I try not to dwell in the past ('try' being the operative word). Life is ahead of me today.