Prior to diagnosis, you aren’t really sure what is multiple sclerosis. In fact, all I knew is you don’t want to have multiple sclerosis.
And you seriously suspect MS at this point. and not having MS is highly unlikely and no longer an option. What to do now? You can’t magically wish MS away. That’s called denial and will bite you years down the road as most of the damage from MS is invisible or happens unknown. You’ve got to start looking at the long game, as MS does not kill, it debilitates. And the added up debilitation is what will kill you. But , let’s not focus on that.
If you seriously suspect you have MS, I’ll share with you what I did*:
0.) Make sure you have insurance coverage before starting this journey. The better the coverage, the cheaper your treatment will be out-of-pocket. I know you don’t want to think about this now, but best to get it in order ASAP. Just to give you a clue: The drug I now take is called Tysabri (natalizumab), and last I knew cost around $12,000/month. Completely infeasible without insurance. But it has put the brakes on my MS, and that – to me at least – is priceless.
1.) Find a good MS-specializing neurologist. The best one you can reach is the best option in this case. If no MS neuro is available, find a general neurologist. They’ll likely be able to refer you to a MS specialist in the area. Or at least help getting a plan of treatment in place.
2.) After seeing a neurologist, you’ll likely be sent for an MR to confirm you MS suspicion. Some people think the MR machine is the worst, but for me the MR is no sweat. It is the needle stick that is the worst IMO. Yes, you’ll probably need to get a bit of gadolinium via injection to enhance active lesions. But you’ll probably be more worried about the scary machine to worry much about that. Bring a caring family member or friend if you want some support pre/post scan.
3.) Probably the most essential thing after diagnosis is to get on a disease modifying therapy (DMT). DMTs aren’t going to fix your MS, they’ll just slow down or stop progression. And putting the brakes on this disease is a very good idea.
Hopefully it’ll turn out to be relapse-remitting MS, the least serious form of MS. If this is the case, you’re with 85% of the population of newly diagnosed MS cases. Roughly 50% of untreated cases of MS will likely turn into secondary-progressive MS. One of the many reasons why an effective DMT is so essentially important. (Source for this paragraph)
Looking for more info on MS?
NMSS is also a great source of information when you’re first diagnosed.
The source link in the last paragraph above also has useful info.
*In my unique case my wife, the MR tech, had already unofficially diagnosed MS, I just had to have a neurologist confirm so I could get on a DMT. I am still under the neurologist’s care.
My source for most of this information is my ten plus years of living with a diagnosis of Multiple Sclerosis