Don't come here expecting to feel sorry for me - I don't.

I hope that sharing my progress and thoughts can offer some nugget of information or a point of view that can help anyone else struggling to come to terms with having MS, living with any form of MS or who lives with, supports or knows someone with it.

I’ve said before that I want to be really open about the stuff I’m dealing with, without it being the topic of discussion all the time. But, like I said when I posted on The Chronicles of Nani after my diagnosis, it’s not “why me?” it’s “why not me?” If there’s something I can do to make it easier for someone living with MS, or living with someone they love having MS, well, that’s why me!

If you or someone you know is affected by MS in any way or if you just seek to understand it, you are welcome here!

Sunday, November 27, 2011


This is a very Nanicentric FAQ, it’s culminated from common questions I’ve been asked. I know that for every person who asks, there is someone who wants to know but doesn’t feel comfortable asking. I get that. But I still want to do everything I can to make people comfortable with it. Because if my people can’t be comfortable with me, how will I ever be able to remain comfortable with me?

Living with MS FAQs

What is MS?

Multiple Sclerosis, MS, is a disease of the central nervous system and autoimmune system. There are lesions on the brain or spinal cord causing demyelination, little bits of the protective covering on the nerves is worn. It’s like pieces of the coating missing from an electric wire. It causes shorts and current that doesn’t get to where it’s supposed to. It causes difficulty or disability in areas controlled by the places where demyelination on the brain or spine has occurred. That can include mobility, muscle cramps, vision, circulation, cognitive functions and general malaise.

How can some people who have MS look just fine while others need wheelchairs?

There are different types of MS. I have Primary Progressive MS (PPMS), which means the demyelination has slowly progressed to the point where I can’t walk without a walker. Only one in ten people who have MS have PPMS. The most common form is Relapsing Remitting MS (RRMS). RRMS has worse symptoms; loss of mobility, vision, mental clarity, but it has those symptoms in episodes from a few days to a few weeks, then the symptoms can almost completely go away. Unless a person with RRMS is having a period of symptoms, you wouldn’t know it to look at them.

Aren’t you too young to get this?

Actually, PPMS is typically diagnosed around 40, about 10 years later than RRMS shows symptoms. My symptoms started just after I turned 40.

Will you die from MS?

While MS is currently incurable, it is not terminal. My life expectancy has not been affected by my diagnosis.

Will you get better?

The disease is not curable at this time, but medication and physical therapy have been known to help deal with the symptoms.

Do you feel sick?

I don’t feel sick, but I do tire easily. Everyday tasks take a lot of energy from me, but I can recharge by relaxing for a few minutes before I go on to my next task.

Are you mentally okay?

I’m actually much better now than I was prior to diagnosis. It was a great relief to know what I’m battling. Mentally knowing it’s okay to get help, to use mobility assistance, has taken the stigma away from using help.

I'm planning to start with these and make a FAQ page for this blog. I really welcome any and all questions and answers if you have them to add. These will be OUR questions, the ones that people with MS get all the time and the ones people who don't have it wonder and are maybe uncomfortable asking.

I also welcome guest bloggers who want to share an MS story. All I ask is that you plaese remember that this blog is meant to encourage positive communication and inspiration.

Leave a comment or email me at


geetlee said...

thanks for putting up this faq Nani. And thank you for doing this. I feel very inspired by your positive outlook, I have much to learn from you.
Thanks for stopping by my blog as well. :)

dr momi said...

Hi Nani....My sister has MS...keep writing, I'm looking forward to reading it!

Debbie said...

wonderful terms everyone can understand!! it's not always easy, but it's always worth it!!

good luck with this endeavor, i will add it to my reading list!!

happy 2012....i hope it's a good one for you!!

Edna B said...

Nani, this is great, and I'll put the link on my blog. Your positive attitude will surely help a lot of folks.
Hugs, Edna B.