Dr. appt and MRI -- Results

[Mamabug]

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.

[KoKo]

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.

Mamabug

Your doctor gave one of the most concise and easy to understand explanations of the difference between RRMS and SPMS, and what the change looks like.

Also, good luck with your cane and hope it helps save your energy.

Take Care

[Mamabug]

Mamabug

Your doctor gave one of the most concise and easy to understand explanations of the difference between RRMS and SPMS, and what the change looks like.

Also, good luck with your cane and hope it helps save your energy.

Take Care

Yes; she really did explain it well. Although I understand the difference, her words make it easy for me to explain it to others.

[Poolwatcher]

I can see why you drive 3 hours to see her.

[Mamabug]

I can see why you drive 3 hours to see her.

Yes; I really like her. The other option is a general neurologist in Wichita, about 45 minutes.
I did that for the first 6 years. And I liked him too; he was personable. But my MS was fairly unmanageable back then. She is just so much more knowledgeable and has helped to get it under better control.

[loopey]

Mamabug,
Your attitude in this post cheered me up. I often wonder if I have progressed to SPMS and your doctor's explanation helped me understand better. You sound upbeat; I hope you are because I know that it is difficult for us at times.

[pennstater]

Sorry to hear about your new lesions. Does your neuro still recommend you stay on Copaxone, or try something new, or stop altogether?

I have had that conversation with my neuro on RRMS vs SPMS. In my case, no change in MRI, but some progression. But is the lack of New lesions indicative of SPMS or Tysabri doing it's job? No real answer, just said at my current age, he wouldn't want to chance it (54).

Hope the cane improves things for you.

[Mamabug]

Sorry to hear about your new lesions. Does your neuro still recommend you stay on Copaxone, or try something new, or stop altogether?.

She believes that the Copaxone is working and expects that if I wasn't on it I would have had more than 3 lesions in 5 years. She recommends that I stay on it. Less than one a year "isn't horrible".

Hubby asked whether I should switch to a different med, since my physical abilities are seemimg to decline more quickly than they used to. Doc said no. MS meds help delay progression in RRMS by less frequent and less severe flares. Fewer flares mean fewer lesions that, as SPMS occurs, will be a place for more damage.

On the other hand, she said none of the meds are very effective at stopping the progression in the old, existing lesions during the SPMS process

The way I understand it, there are two processes currently going on with me. Thus, the "gray area" that she said I am currently in.
1. The 2 or 3 flares plus the 3 new lesions within the past 5 years indicate that I am not totally out of the RRMS phase (so I still need Copaxone).
2. My additional declines in mobility might indicate that some SPMS activity is going on as my old existing lesions accumulate more damage. My guess is that, at some point, she'll take me off Copaxone if I have no new flares or lesions for an extended period of time.

[jennyver]

Thank you

I just want to thank you for sharing your experience and explanations. It’s helped me understand my own situation better — I think I’m in a similar position to you where I’ve had stable MRI’s but have noticed definite progression.

Unfortunately, I’m currently in a noticeable flare for the first time in the 7 years I’ve been on Copaxone. I see my neuro tomorrow to discuss whether we’re going to treat the flare, and to revisit whether to stay with the Copaxone.

[Mamabug]

Sorry to hear about your flare, jennyver. And, I'm sorry about your progression too. It's hard to watch more and more of our abilities decline.

Keep us posted.

[palmtree]

That is very enlightening. When I first got diagnosed I asked my, then, neurologist if lesions continue to appear with SPMS. She said that new lesions are constantly forming but there is no defined flare. She said if no new lesions form there is no progression.

I haven’t had any new lesions in 8 years but I have progressed plenty. Must be SPMS.

[Mamabug]

That is very enlightening. When I first got diagnosed I asked my, then, neurologist if lesions continue to appear with SPMS. She said that new lesions are constantly forming but there is no defined flare. She said if no new lesions form there is no progression.

I haven’t had any new lesions in 8 years but I have progressed plenty. Must be SPMS.

Hmmm. Your doc gave a different explanation than mine. I would guess you might be correct, if what mine said is accurate. That you might be in SPMS.

[KoKo]

I haven’t had any new lesions in 8 years but I have progressed plenty. Must be SPMS.

There can be "under the radar" neurodegeneration going on (without visible lesions) that causes progression in both SPMS and PPMS.

[Mamabug]

Thanks

Thank you to everyone who has responded to this thread. It seems like there are a number of us who might be in the same "gray area" between RRMS and SPMS.

Of course, none of us wish this on the other. But, there is some camaraderie in knowing that others understand, somewhat, the questions about my future and my present emotions that this brings up.