I've had RRMS for 5 years. The first year and a half I had 3 relapses requiring IV steroids. Then I was free from relapse for 3 years until November when my mother passed. I cannot get back to my pre- November self, despite 2 rounds of steroids; one in December and one in March. I fear I won't recover any time soon or worse that some of my NEW symptoms such as bladder problems, increased spasticity in my legs, increased exhaustion, ringing ears, cog fog increase especially struggling with word usage and spelling etc. will stay with me. What are the odds of my regaining my pre-November self?? 10%? 90%? Or is it impossible to tell? I'm a big girl I can handle the truth and prefer it. Thank you!!
It is not possible to give you an answer in percentages with the information provided, but I can can provide some insights that may help. First, you seem to have at least one risk factor for more rapid MS disease progression; that is, you experienced 3 relapses with 18 months of MS symptom onset. This places you at higher risk, all other information being equal, of developing persistent and significant MS related problems within 5 to 10 years of symptom onset. Independent features that would suggest a greater risk of early problems include age > 35 at onset, a large amount of apparent disease related to MS (the white spots) on your MRI at onset and significant new MRI activity over the first 5 years. For these reasons, you require an evaluation by an MS specialist to determine if you should be treated with a highly active disease modifying therapy for your MS to prevent further worsening and potentially enhance recovery.
This being said, you experienced your most recent relapse almost 6 months ago. While 80% to 90% of individuals will experience their maximal recovery from a relapse within 6 months, it is possible, if not likely, that improved management of the symptoms and problems mentioned in your question will lesson their impact on your every day life. This may include treatment of any persistent depression and sleep disruption, improved management of bladder dysfunction and aggressive rehabilitation through aerobic fitness and weight training. Please discuss all of these issues with your MS specialist and see if you can get yourself on the road to recovery soon.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego