Hello
Of course this is the right place for your post. You sound so unhappy, you certainly do need some sunshine. What a way to find out you have MS.
Have you been told what variety of MS you have? You probably know this but there are two essential types, the Relapsing Remitting variety, which later can become Secondary Progressive or Progressive Relapsing (so RR/SP/PR), or Primary Progressive (PP).
People with the first variant tend to have relapses, aka flares; these are typically followed by at least partial remission, often total remission. But that can take some time. There are now a number of disease modifying drugs (DMDs) available to ward off the relapses, ranging from highly effective drugs (with the possibility of greater side effects) or less effective. Many people do ultimately become Progressive (usually after many years - it took about 19 years for me), this means they typically don’t have relapses, just a general slide further into grater disability. Some have the PR variant, where there is progression plus relapses (I’m a lucky bunny, falling into this category).
About 15% of people with MS have the Primary Progressive variant. This is often the most difficult to diagnose, so could take longer; some people are initially diagnosed as RR which is later changed to PP, until now there have been no DMDs available for PPMS. Recently though, a single (not ever so effective, and only available to a few people) drug has been given the OK to prescribe for PP, called Ocrevus. Better one than none of course, but it’s generally accepted that insufficient research is done into finding effective progression reducing drugs for this type of MS.
Have you been told about DMDs by your neurologist? And do you have an MS nurse? Believe me, a good MS nurse is worth at least 3 average neurologists. If you haven’t been told your MS type, or offered a DMD, then you probably should be. Try phoning your neurologists secretary to see how you can get an appointment to talk about both.
It certainly sounds as though you need some help. There are drugs which could help with symptom management, physiotherapy to help with maintaining some fitness. How I wish I’d known 15 years ago just how important a strong ‘core’ was. How I wish I’d known what that sentence even meant! Occupational therapy can help with aids and adaptations. All of this could be accessed from your MS nurse or neurologist. In my area (Coastal West Sussex), we have an excellent community neuro team. Other places have different ways of accessing therapies and help. There might be an MS Centre near to you which can offer treatments, exercise classes, just other people in the same leaky boat as you.
When you are randomly googling MS, be careful. We often say not to trust Dr Google, he is not a licensed neurologist. Instead, you can use the information on this site (see the About MS tab at the top), or the MS Trust (just type in a word to your browser that you want information on and MS Trust - there’s a wealth of excellent information). You can always ask us anything you want. Just remember, that we can only talk to you as fellow inhabitants of that boat, and using just our experience.
You’ll find that we are a friendly, quite inclusive group. I hope you’ve found some of this nonsense useful. (I tend to start writing and then just not stopping!)
I hope you find some sunshine soon.
Sue