My MS is not her MS is not his MS is not...

I harbored a lot of anger and resentment for some time because there was a woman that I knew in passing that repeatedly asked me if I was going to have more children.  I dearly wanted more children but I had two miscarriages.  The first left me feeling numb from head to toe on the whole right side of my body.  The second left me with a bout of optic neuritis and blind in my right eye.  Both are resolved now but knowing how my body would react to those hormonal changes made the decision quite clear.

Still she pressed on and on week after week.  "My friend has MS and she has 5 kids and is doing fine."  I'm happy that your friend is able to do that, truly I am.  MS steals so much away from us that her being able to have that in her life is wonderful.  She pressed and pressed, even got to the point where she asked me daughter, 6 or 7 at the time, if she wanted a brother or sister.

I never spoke to her again.  That pissed me off to no end.  Blabber to me about my decision to not have any more children, even though it is not your business at all, blah, blah, blah, blah, blah - steam rolls out of my ears, but approach my one and only child and bring her into your selfish nonsense and you are dealing with mama bear.

Other than the marked clinical MS diagnoses [relapsing-remitting (RRMS), secondary progressive (SPMS), primary progressive (PPMS)], there are significant disease courses within those diagnoses that affect one's life,  Someone may have a PPMS, being completely wheelchair bound, unable to dress themselves but have no cognitive side effects and may be able to hold a job as a professor, for example.  Someone with RRMS may be able to run a marathon but have cognitive side effects that make holding a job impossible.

MS can affect speech, bladder and bowel function, mobility, strength, coordination.  It can cause intense fatigue, insomnia, depression (both from the aspect of dealing with the disease and damage to parts of the brain that control emotions), emotional lability (responding inappropriately like laughing at a funeral).

MS can cause others to compare you to a relative or friend that has MS and "Hey, they have 5 kids and are doing great!" or "My uncle was diagnosed and within 3 days his diaphram stopped working and he died." or "I have MS but it doesn't have me!" or "My friend was diagnosed when she was 24 and is 28 and is in a nursing home and can't do anything by herself".

Comparing one persons MS to another's is not like comparing the last time you had the stomach flu with someone else.  It can be as different as assuming that if someone says they have cancer that their course will automatically be the same as someone else even if the diagnoses are easily removable in-office skin cancer versus stage 4 pancreatic cancer.  Like cancers, not all MS is created equal.

Don't get me wrong, saying that you know someone else with MS and know what they have gone through it great, make the connection but don't assume that I am just like that person.  Don't assume that since they struggle with fatigue that they have been able to treat well with medications that I am just not taking the right things or don't know what I am doing with my disease course.  Yes, I'm happy that it works for them but I have tried several of the anti-fatigue meds and they haven't worked for me.

My symptom and disease management is between me, my doctor and my family.  I love to hear if there's a new treatment that works.  I appreciate being shared information.  I appreciate being thought of but if I decide that a treatment isn't right for me, a life altering decision isn't for me and my family, I would also appreciate if you could just see that not all treatments work for all people, statistically the standard treatments work on 30% off all patients (most non-MSers don't know that).  That's a pretty big failure rate, in my opinion and takes a big leap of faith to try them to begin with considering some of the side effects (flu-like symptoms that persist for months, injection site reactions, scar tissue build-up, liver damage, etc. ).  I took 12 rounds of chemotherapy over 2 years with potential side-effects of congestive heart failure or leukemia.

Luckily I went into remission.  My original deficits are still present but I had quickly gone from walking unaided to a cane and then to a walker and got a wheelchair for distances.  Most days I can walk unaided now.  I praise the way Novantrone worked for me but I know it doesn't work for everyone.  My MS is not your MS is not her MS is not his MS.  Please remember that.