For those who have had MS for 15 years or longer

[Mamabug]

Thanks for sharing, Sandy. And welcome to MSWorld. I hope you'll explore us and keep coming back..:-) sorry to hear you are in limbo. That's difficult proactive, especially for so long.

[Mamabug]

Update

I'm curious. I'm between 14 and 15 years since MS onset. I've been reading that, at 15 years, 50-70% of people with MS are using a cane or other mobility device.

• How long since your MS onset (not diagnosis, but onset)?
• Do you use a mobility device? Regularly? Occasionally? What do you use?
• Do you still have RRMS or has your dx been changed to SPMS?
• Are you employed, or on SSDI? When did you go on SSDI?

Here are my answers:

• January 2002, a little over 14 years
• Not usually; occasionally, when I'm in a flare
• RRMS
• Went on SSDI in 2008, 6 years after the onset of MS

I initially posted this question exactly two years ago. Here is my update. I posted it on other threads, but I thought it would also be appropriate here.

On Friday, hubby and I drove 3 hours to Kansas City (KU Med Center) for my 6-month appointment with my MS Specialist and once-every-5-years MRI.

The MRI showed some changes from 5 years ago. Three new lesions. I've had 2 or 3 minor flares in the past 5 years, so I'm guessing the lesions resulted from them. We also discussed the decline that I've noticed in my physical abilities. Hubby and doc have also noticed them.

I asked doc if she believes that I am still in RRMS, or if I've progressed to SPMS. She said that I am "in the gray area". Because my MRI indicated new lesions, I'm not out of RRMS yet, or I would not be experiencing flares or new lesions. But, she observes some indications of SPMS approaching. As that change happens, I will exchange the flare and new lesions for progression and new damage in existing lesions.

Not related to my appointment, but to my decline and the progression of my MS, I have replaced my folding cane (which I only rarely used), with a regular cane and a tri-pod tip. The tip offers me better balance than a regular wobbly cane and it stands by itself, which is convenient. It is also a more attractive cane than my other one. Sort of a sky blue color with a small squiggly design in a silver color.

I've started using it whenever I leave the house. I'm not sure that I "need" to yet, but it helps me. With my cane, I have better balance and more support when I walk, and it helps my gait, I think.

[sing_a_long]

Hi Mamabug,

Thank you for sharing the update =)

I've just joined this club -

Here are my answers:

- 15 years
- Never have, but in hindsight would probably have benefitted from one at times in the past.
- RRMS since dx
- Still full-time employment

[Mamabug]

Thanks for your reply, sing-along. I'm glad you are still doing so well. What med and / or CAMs do you use to manage your MS?

[sing_a_long]

Thanks for your reply, sing-along. I'm glad you are still doing so well. What med and / or CAMs do you use to manage your MS?

Hi Mamabug,

I have tried all the CARBs over the years & didnt think they were very effective for me.

Truth be told, my MRIs are like swiss cheese because there has been extensive damage.

I am very fortunate to still be working because my CNS has been resilient to the damage & has learnt to do more with less resources.

I am currently on Fingolimod and think this is the only drug I have tried that has been effective for my me and my body.

All the best,

[Mamabug]

It's interesting, sing-along, how we are all so different.
You and I have had MS fir a similar amount of time. You 15 years. Me 16 years.
I've been on CRABS for 13 years. (Copaxone has been considered effective for me since 2008). CRABS have not been very effective for you.
Yet I've been on disability since 2008 and you are working full time.

[leborjo]

• How long since your MS onset (not diagnosis, but onset)?
• Do you use a mobility device? Regularly? Occasionally? What do you use?
• Do you still have RRMS or has your dx been changed to SPMS?
• Are you employed, or on SSDI? When did you go on SSDI?

I believe I began showing symptoms during my second pregnancy at 31, in 1997. My symptoms waxed and waned and stayed in Remission for long periods. It was not until a few years ago, that my flares became consistent- Finally diagnosed in Sept 2017.

I occasionally have to use a cane, and the rascal shopping cart during walking flares. I still ride a bike- but do it very slowly. I've lost my balance a time or two trying to get on it,and fell.

I have RRMS.

I still work. I do customer service. Sit at desk all day and can work from home when I have a flare. My boss knows I have MS. I am beginning to have trouble with speaking- hoarseness and losing pitch. So SSDI is probably coming soon, if this gets worse.

[Mamabug]

Thanks for sharing, lejeboro.