Explaining the MS "process" to others

[katvar]

So I am going to be having an MRI this afternoon. My husband does not understand why. Others have questioned why I have had so many test also. They think the doctor is just running up the bill and it is a scam of some sort.

I am having an MRI this time to determine how much my MS has progressed since I started on Copaxone over a year ago. The fact that it has progressed isn't in question. This will determine if I stop Copaxone. The neuro hasn't discussed alternatives.

I can't explain to others that this disease that so many people are aware of is still such a mystery. There is no single easy test to give us answers for our symptoms and there is no treatment or pill to simply make it all better. I can not get people to understand that about MS.

How do you explain the ongoing tests, doctor appointments and medications that don't make you better?

[AnneLouise]

Thanks, Sparky. That was the best explanation of ms, it's progression and the process, I have ever read.

[ru4cats]

Wow! I agree! Well said!

[Sir-Voor]

It’s like one of those carnival games where someone throws darts to try to pop balloons.

Your MS drug goal is to reduce the number of dart thrown, and MRIs show how many where thrown, unlike symptoms that let you know how many balloons where popped. By knowing how many your doctor will know if you’re on the right med or if it need to be changed.

You are in a major battle and going just by symptoms would be like taking a pocket knife to a fight against the 7th fleet.


P.S. For your battle in addition to your DMD/Copaxone shield I recommend equipping yourself via creating Anti-inflammatory/Antioxidants diet body armor, exercise combat training, and ask your doctor about get an Ampyra mega gun. Also be sure to avoid stress landmines.

[Kimmy92279]

Look at an asphalt road (nervous system). When damage is done (demyelination) it gets patched, causing bumps (lesions). When the bumps get bad enough drivers avoid the road (rerouting signals).

The road maintenance department (Drs) calls for occasional studies (MRIs) to see if their form of maintenance (medication) is working or if they need to try a different repair system (change medication).

Sparky - I absolutely love this analogy. I've only recently started dealing with this and have an understanding with all the reading I've done. But telling my family members (and I haven't told many yet) has been difficult and helping them understand exactly what is happening and what the medicine is supposed to do.

Thank you for the response and thank you to the poster for the original question!

[JudySz]

Great way to explain this craziness.

I have also used the extension cord one. that the plastic on the outside is like myulen and when it wears away, the wire is exposed, causing my problems.

JudySz

[katvar]

Sir Voor
Thanks for an analogy that made me laugh.

I do yoga and other balance exercises daily to help me remain ambulatory (and not broken).

I take Ampyra and Provigil along with a nice assortment of vitamins.

I also eat a careful diet (I always have been health conscious - that irony for you)

NonMSers just don't understand the guesswork that goes in to treating MS and why I go through it without knowing if it will work. They think I am brave - they don't see the desperation to just feel better.

[Thomas Jackson]

Gosh darn , Sparky , can you explain the math behind string theory to me next?

[Sicko]

My internal wiring harness is self inflicting damage, I am monitoring it for self repair.

[Thomas Jackson]

Hey Thomas, you live in my hometown!

Sorry, I made an A in math one time, in the 7th grade. Mr Lamb was a great teacher!

You make an A in attitude and willingness to help everytime. Besides Einstein could not find his way home every day!

[0485c10]

Maybe the article "Its just the tip of the Ice Burg " will help explain why you are doing all this for something the doc's can't cure.

I hope you can print a copy of it & leave it somewhere, where it will be read...like next to the toilet, on the dinner table or in a briefcase to take to work & read.(i'm cynical about getting guys to cooperate & read something, obviously)

i have a link to the article on my homepage, under 12/17/2011 I labeled the link "Risk of not Treating MS lesions article called 'it's just the tip of the ice burg'"

[LisaL77]

MS is an ongoing condition

kat, I would explain that this condition will be monitored closely and frequently for the remainder of my days. No scam. Just trying to stay on top of the progression of it. Otherwise, how could you adequately treat it if you don't know the path it takes?