Symptom Progression - stable tests

[pennstater]

Hi All,

I have a neuro appt. next week and am trying to prep for it and want to make sure I ask the right questions. I guess I am wondering if I could be moving into secondary progressive phase. I appreciate anyone who reads thru the novel below.

The past two years, I seem to have increasing symptoms. I've had a few relapses, recover mostly, but have some additional residual symptoms. While working full time, my quality of life decreased as I spent the non-working time trying to recover. The fatigue is the worst right now, along with arm weakness and right arm pain.

I lost my sense of smell at 15, and then had a bout of confusion followed by severe vertigo at 29. I didn't have a lot of issues and was diagnosed at 42 with lesions in brain and spinal cord. So it is possible I may have had MS 34 years, neuro said definitely at least 20 years.

I have had stable MRIs - no change, pretty much since diagnosis. I switched to Tysabri last year when Rebif started to affect me, along with the increased symptoms.

Along with the MRIs, I get an OCT annually. This also has been stable - no sign of retinal thinning. There are some articles that the OCT helps measure progression.

Finally, I've had cognitive testing at three different periods. Each time, my general IQ remained almost the same (1 point difference), however, had changes of more than 40% on specific measures (decreasing), while other areas increased. The areas that decreased were the more complex functioning and delayed memory. I don't know what my IQ was pre-MS to know if overall change, but neuropsych suspects it was higher than what I tested at. I have to ask why some measures would have increased - seems strange if either the MS or fatigue behind the decreases.

Does this sound like I could be entering secondary progressive? I know that during this period, you can have relapses, but they eventually disappear while symptoms increase.

Aside from why I have stable test results but increased symptoms, along with increase/decrease oddities from cog testing, are there other questions you would ask? I am concerned how both affect my chances with LTD and SSDI application.

Thanks again to all who took the time to read and respond.

[MSW1963]

pennstater, it took 10yrs for my MS docs to dx lower motor neuron disease and c-spine lesions because my spinal MRIs are clear.

My MS as progressed pretty significiently in the past year, even though I've had sx's of spinal cord leasions since I was dx'ed 13?yrs ago. It seems to have taken that long for most of the sx's to progress to the point that they could be identified during my neuro exam.

My doc's used to 'pop the cork' in celebration that my routine brain MRIs were stable for so many years, and my spinal MRIs were clear.

I suspect that our doc's and those of us who used to celebrate the stable MRIs are learning clear MRIs don't always eaual no progression.

[Thinkimjob]

Could not agree more, MSW1963.
I've said it many times here. The naked eye can see progression a lot better than an MRI.

pennstater, "While working full time, my quality of life decreased as I spent the non-working time trying to recover" - that's me.

Only work three days a week, but it is nine to five. I spend the alternate days and the weekend recovering from the days spent working.

I honestly don't know whether you'll get a straight, "You've got SPMS" answer. I can't get one, even if I ask bluntly, even if I assure them I'm not going to be upset, even if I say, "I think I'm SP."

I think they don't call it in case you lose access to dmds.

[Thinkimjob]

Could not agree more, MSW1963.
I've said it many times here. The naked eye can see progression a lot better than an MRI.

pennstater, "While working full time, my quality of life decreased as I spent the non-working time trying to recover" - that's me.

Only work three days a week, but it is nine to five. I spend the alternate days and the weekend recovering from the days spent working.

I honestly don't know whether you'll get a straight, "You've got SPMS" answer. I can't get one, even if I ask bluntly, even if I assure them I'm not going to be upset, even if I say, "I think I'm SP."

I think they don't call it in case you lose access to dmds.

[KatieAgain]

My doc's used to 'pop the cork' in celebration that my routine brain MRIs were stable for so many years, and my spinal MRIs were clear.

I suspect that our doc's and those of us who used to celebrate the stable MRIs are learning clear MRIs don't always eaual no progression.

Boy Howdy! You took the words right out of my mouth.

Pennstater-I have been so sick and progression has really been creeping up on me...it is hard to believe. I too thought...well I am in Secondary Progressive, but then I had a major flare.

I have to agree stable MRIs do not equate to no progression.

I am having to once again readjust to a completely different normal. I have just been referred to a new MS Specialist, who is probably the most well known in our State, and this is going to be the primary topic of discussion.

I can relate. And although I am still having flares, I have to be on the cusp.

[rdmc]

I had a couple stable MRIs, with no resolution of the lesions that were already there, but slow progression of symptoms.

I had already quit taking my DMD for about 9 months in hopes of curbing constant UTIs, as one of the side effects of Beta can be increased infections, I felt it was worth a go.

So they did another MRI a year after the last one, and 9 months after quitting my DMD...stable. There was some discussion of the inflammatory stage of MS, versus stable MRIs yet constant presence of symptoms, and the bottom line was, he did not think a DMD would be of any help at this point. So he did not prescribe one.

I understood the implications of "I don't believe a DMD is warranted at this point."