Long road to Validation and a long post...

[MSW1963]

I started Aubagio in July 2014, 8 months ago, after my MS doc switched DMT from Tysabri due to +CJV and high titer risk for PML, and +2yrs on Ty plus an unexpected MS event earlier in my Ty treatment.

I haven't heard from my doc's office since late June, early July when I started Aubagio, other than calling in for refills for sx meds. Mid March I happened to need refills for 2 meds within the same month, both approved. Within the week I got a call from the office that I needed to see my MS doc's NP. I saw the MS/NP last Friday. On the drive there my check engine light came on the dash and the car started sputtering on the interstate Hwy. Made it there early, able to make arrangements for transportation back home, a tow to the dealership for the car, and able to see the NP. I came a bit unhinged over the episode with the car I guess, because the NP mentioned that I appeared anxious. I mentioned the problem with the car sputtering/check engine light, etc., she laughed and said that would make anyone anxious.

For the first time ever, I was told that I have 'a lot going on' due to the high number of brain lesions on MRIs, which, BTW, have been 'stable' since my dx 15yrs ago, +20 lesions, too many to count, but unchanged MRIs since MS dx in 2001.

The car is repaired, good as new. Me, not so much. I'm having increasing problems maintaining posture, trunk/torso weakness, so much so that it's scaring me. My cognitive deficits are scaring me too. At the moment I'm not sure how this is going to end, only that my options are few, with no good end in sight.

[loopey]

I Understand

I understand how you feel. Sometimes I feel helpless and hopeless and that I am physically worse. I get more stressed than I did before MS (don't know if it is related) but when I am stressed I have a hard time coping with the things MS has done to me. I have been scared that the progression is permanent and many times feel that my sx are much worse but after my MRI's I am told that I am stable. I take that word and think of it when I start to slide downhill mentally. Sometimes it helps and sometimes not so much. Be good to yourself. This is a good place to say how you are feeling.

[Thinkimjob]

Relapses, not permanent, progression, kind of final. Stress/ depression whatever. That stuff about "stable" lesions has always driven me silly. If nothing has changed lesion-wise for 15 years, then wth can't I walk?

You did well with the car. Happy Easter.

[KatieAgain]

It is indeed a hard pill to swallow. Once the progression starts, it is almost like being diagnosed all over again and the grief cycle reboots.

Thing is, at least for me, once you accept it, everything becomes easier. Does not mean you have to like it, but you do have to adapt...and the more you adapt...the easier it becomes. No two ways about it, MS Sucks and I absolutely hate it.

For example, I just had ON, and in all probability I have lost some sight in my left eye. Nothing I could have done to prevent it. Nothing at all. I will still be able to drive, but I am already researching my Plan B in case I get it yet again and it wipes out my eye totally.

The Cog Fog scared me too. I write everything down...I am a lists gal. I have a list for everything. It has really helped. I think you mentioned in another post about public speaking. I too do that. Before, one could give me a topic and I would wing it successfully. Now, if I speak in public, I write the entire speech out and read it. Nothing wrong with that.

PT might help the posture issue. Not sure, but might be worth a try.

None of us do know how this is going to end...thats indeed a true statement. That is why I try not to worry too much (can't help a little) and live for the day because tomorrow...this day will be gone.

[MSW1963]

loopey thanks for the reply. You're right about the stress. My usual dull uneventful- high stress life has turned into a life with entirely too many moving parts with stress that's through the roof recently.

I have read my MRI reports over the years and know after 20 lesions they stop counting due to the possibility that the same lesions could appear in different images or 'slices'?, and thankfully I have been in the burnout phase in terms of no MRI progression. My MS docs over the years have really never mentioned lesion load during OV, and until the past few years my clinical exam has been stable too. That's what made the NP's mention of my lesion load unusual, it's never been mentioned before, by either the MS-NP or my MS doc. I'm also concerned my unmanageable stress is associated with frontal lobe lesions that are responsible for gait apraxia sx's.

Thanks again for the reply and take care.

[rdmc]

PT might help the posture issue. Not sure, but might be worth a try.

None of us do know how this is going to end...thats indeed a true statement. That is why I try not to worry too much (can't help a little) and live for the day because tomorrow...this day will be gone.

As far as your posture, PT might help, but see if there is a Balance and Gait Center PT facility. I was sent for this type of PT a couple years ago and it is unlike any PT I had had before. They have specialized machines to analyze your balance, gait, posture ( a lot of the time, our posture is used to compensate for weakness or imbalance in another area of our body, or it can be due to weakness of muscles, but these PTs really helped me...I tend to lean, and due to weakness in neck muscles, my head tilts and likes to "live" near my right shoulder) They diagnose the source of the problem, and then help, as far as there is help, with correcting the problem. Sometimes it just tuning in to a symptom and consciously, regularly trying to get your body back into "position." Anyhoo, I highly recommend that type of therapy. I've had lots of PT but I can honestly say that this was the most effective I've ever had.

As far as "scary" symptoms, I use worst case scenario, that's one of my coping methods, but I use it more with situations I might encounter, i.e. what would I do if "x" happened and I was in such and such a place.

With some of my MS progressive symptoms, I don't go to worst case scenario in my mind. I let those "scary" symptoms be and figure I'll deal with them the best I can if/when they progress.
figure I'll think about that if/when it happens. (maybe that being Scarlett O'Hara, but some things are not helped by "thinking" about them today, so why not wait till tomorrow.)

I agree with Katie on the acceptance theory, I've noticed as I continue my MS journey, some things that would have freaked me out a few years ago if I found I had them, now don't seem to phase me. I've had problems with my tongue for years, and my neuro sent me to another neuro to see if we could nail down exactly what's going on...his diagnosis was atrophy. I even surprised myself, I was totally unphased by that news, even though I do understand the implications, the news was like "water off a duck's back"...not sure why, probably because what can I do about it, absolutely nothing, it is what it is, and thinking what could be won't help me at all.

[MSW1963]

Thank you guys for taking the time to reply. Doesn't change much, but on the other hand, changes everything knowing you are here.

Thinkimjob, as usual spot on and phunny too!

KatieAgain, I'm long overdue for finding acceptance and adapting, but I just haven't found it yet. My list turns into my list of list of things to do.

rdmc, I can't go near the 'worst case scenario' about MS progression. I got stuck a long time ago being bitter and angry about all the misogyny I experienced just getting to a dx. I guess that's key to moving on for me, but my trust and confidence in my care providers was shattered long ago. It's unlikely things in that department are changing any time soon. Thanks for the PT advice. I was going to ask if PT was specialized MS, but I ran out of gas energy wise. A not to funny car pun.

Work was my 'go to' for coping with life's usual bumps in the rode, and stress was my bff. I haven't been coping well for a very long time, because my lifelong friends, stress and work, are no longer viable options and I haven't managed to come up with my MS coping scheme. I managed to be an attentive single parent to a really good, ambitious kid, although a bit on the bratty side with some anxiety issues of her own. Bratty=MS is a character flaw and a major inconvenience for her.

Now where's that list....