Starting At Zero

I’ve decided that a good early post on this blog would be describing exactly what is multiple sclerosis. But before I really dig in, I will say  that MS is different for everybody and your disease course may not follow the prescribed path.
So what is MS? I could take you to this wikipedia link, but that’d be too easy for all of us. I’ll just give you the most direct way of putting it generically. MS is a demyelinating disease. This means that your myelin sheath (think of it as nerve insulation) in your brain and spinal cord is effectively stripped away by your own immune system.  And this is why MS can have such varying degrees of incapacitation. Think of it as an electrical problem in a car. One little wire being shorted out can cause a minor irritation like a warning on your dashboard or it could cause the car to stall out completely.  Like I may have mentioned in an earlier post,  one little lesion can pretty much disable you, or a whole slew of lesions may not have that big of an effect on you. Everyone is different
This is also why MS in non-communicable. You absolutely can not pass MS to another person. It is an autoimmune disease.
As always I’ll include that the best way to battle MS is to get under the care of a MS-specialiizing neurologist and get on effective MS medication as soon as possibly feasibly. What I’ve learned is the earlier you catch MS and get on an effective MS medication, the better chance you have to prevent such damaging lesions and progressing into a worse form of MS.
Put the brakes on MS now my fellow sufferers! It may seem dire when you’re fist diagnosed, but with treatment and perseverance, you can likely hold out against MS.

If You're Like Me

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?
Wikipedia’s article about Multiple Sclerosis
National Multiple Sclerosis Society’s explanation of what is 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