Let me just start by introducing myself. I have been a long time lurker of this site, but decided to finally join after reading your post. I was diagnosed with RR'MS about 6 months ago. I am a 29 yo male. I have probably been dealing with this disease for about 6 years, though like many people here minimized my symptoms as they always resolved completely and fairly quickly. Last year in December though, I could not ignore my symptoms anymore as I was unable to walk with out help and eventually could not move my left leg at all. Fortunately, after 2 weeks of hospitaliztion and some IV steriods I regained 90% of my functioning and am now at an EDSS of < 2. This relapse in December came 2 weeks before my commencement for my Doctorate degree, so needless to say my initial reaction was one of anger and despair. The most awful thing about this disease is the unpredicatable nature of it. Btw, my degree is in Clinical Psychology, so I know from personal experience in helping others that the unknown is a terrible source of fear and anxiety. I think I coped with it all initially by trying to learn and read as much as I could about anything and everything related to MS. I think having this information gave me a sense of control. However, I still had a propensity to be alarmed by any small changes in symptoms as I feard another relapse. My day-to day living was predominated by MS. Sure enough I relapsed again in February of this year and was hospitalized for another week. I had a bout of double vision that lasted for 4 weeks and a right foot drop. Thankfully, I am again stable and my EDSS is <2. I have learned a lot about myself and others in this whole process (like the fact that I have a tendency to ruminate and worry excessively). I have realized through all of this that there are some things that I cannot control and that fretting over them will only do me harm. I have learned that although I too have lost my old self, this presented an opportunity to create a "new" and better me. Perhaps my physical capabalities are not the same as before but I doubt anyone else would know otherwise. This disease in a way has given me a sense of purpose and solidified my passion for helping others. Along the way though, I realized I had to help myself first. So I have created a lifestyle for myself that I often preach to others but rarely followed before this for myself. I now eat in a very healthy way, make sure that I get adequate sun exposure several times a week, exercise 4-5 times a week, take supplements, take LDN, do Tai Chi/ Yoga, and Meditate almost everyday. More importantly though, I have surrendered control over that which I have none. While the future in unknown and I may end up being disabeled, I do NOT believe I will end up that way. Although many people do end up that way, many do not. There is a 10 year longitudinal study that I read that essentially stated that 1 in 3 people whose EDSS score was <3 at baseline remained unchanged 10 years later. This was a naturalistic study and the patients took nothing for their MS. I suppose this is what might be labeled benign MS, but it indicates to me that this ill fated future that you fear is not guaranteed. I am now doing everything I can to take care of myself, so I feel my odds are better than 1 in 3. I have decided to live my best life "now" and not wait for a cure or better treatments. If you approach this disease this way, I can't help but feel that you are handing over any sense of control that remains away. In closing, I will say that this disease has shifted my priorities in life, as I now realize more than ever the value of my friends and family and that while this disease may rob me of many things, it cannot touch my connection with other people and the love that I share with them. I have learned to make time for myself and to be fully aware of the moment to moment nuances that make life worth living.
All the best,
P.S. This experience has also crystalllized for me the power of the mind/body connection. I already knew that from an academic standpoint (as there is tons of research in the field of psychoneuroimmunology that suggests that how we think and feel impacts the functining of our immune system), but have experienced this first hand on my own. I believe my turning point was after my hospitaliztion in Febraury (which was preceded by tons of stress and worry). I now feel significantly better and am striving towards being 100% whole again. However, I am not letting my getting or not getting to that point determine the quality of my life.
Last edited by verminsquibble
on Thu Jun 29, 2006 3:05 pm, edited 5 times in total.