I have often asked for information on this website and found it very helpful. Thank you for this site.
I was diagnosed in Jan 2012 with optics neuritis which was my first official attack. They told me I had had MS for many years and classified me as inactive. After my diagnosis I was in denial for years and had no symptoms. After 3 years, symptoms started with my right leg, arm etc. and nerve pain. I finally saw a neurologist but unfortunately he was not very good.
After many attempts with my doctor I saw another neurologist. He was good and gave me medication for my symptoms. I moved at the end of October from Monaco back to Australia to obtain better treatment and better communication with a neurologist. This failed as I was on a category 2 list waiting to be seen.
After months we packed up and we went back to Monaco (animals, furniture included). Lots of stress. I am now trying to get help in Holland (where i was born) but also seem to have troubles getting in. If you would know of a MS neurologist here I would be happy to know. I now feel I am at a stand still and I am scared my MS will progress.
My symptoms are getting worse (i.e., pain in leg after one hour walking, headaches etc.) My husband is telling my two sons that my MS is getting worse but to be honest i can still walk very well at a good speed.This worries me. What happens if I do not handle my MS and just let it be?? Sorry for my long story but i feel alone with my diagnosis.
You should contact Dr Uitdehaag in Amsterdam. He is the director of their MS clinic.
It sounds like many of your problems could be managed better if you only had access to information. As you mention in your submitted question, you do not actually feel as though you are getting worse; you are bothered more by the uncertainties surrounding your prognosis and the fear of getting worse. Try to focus on how you are doing now and ask us specific questions on problems that are interfering with your life. We may be able to help. Remember, a significant number of people with MS go many years if not a lifetime without developing any non manageable problems.
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego