how do we recognize progression

[pamgarner]

just thinking outloud, i have secondary ms and wonder everyday am I progressing?lately my legs are weaker and fatigue sets in sooner.my last 8 mri's were clear.now to take a shower,get dressed, and do breakfast dishes use to take 1and1/2 hour now has progressed to 2 1/2 and so fatigued have to sit at least 1 hr.i know i need to talk to dr. last visit after checking me 4 months ago,he said no changes,what has happened?i know dr. said you can have new symptoms and no new lesions,or new lesions and no new symptoms.is it age on top of it all?? ms is also a deep mystery..uuurrrggghh!

[BlanketTime1]

i am by no means an expert and stuck in limboland... but i've had neuros reference new lesions that don't show. my most recent neuro just talks about them as if they did show, like, 'you're having this symptom b/c of the new lesion in your cervical spine.' which i guess is a good thing? are most of your lesions spinal? i ask b/c spinal lesions are notoriously fickle about showing on mri's.

i tend to freak out when i worsen at all, but sometimes it's b/c i've overdone it or even b/c i have a cold. i'm pretty sure i contracted omicron a few weeks back and before i put it together, i was convinced i was about to wake up with paralysis b/c it was so hard to get my body moving.

i hope you find answers soon. hopefully someone more knowledgeable will reply.🤗🤗

[pamgarner in reply to BlanketTime1]

i have very few lesions on my spine that i know of mine are all over my brain,when i ask the dr how many,he responded well,lets just say alot and everywhere.i told my hubby he honestly can tell people his wife has holes in her head😲

[Kenu]

It’s been over 26 years now and I have been pretty lucky my MS has progressed slowly. I think differently the DMT’s that I have done has slowed it down tremendously. I know several people that have been stubborn and done none of the meds that are in wheelchairs 🦼 and assisted living. Several that have passed away and most without meds. So yes I am a strong believer that DMT’s slow down progression. My right side has progressed with a lot less use of my hand and I wear an AFO on my right leg, occasionally a cane. I do use a cooling vest in the summer as the heat effects my fatigue. I do get around fairly well and still drive and live at home 🏡. Fatigue is one of the biggest problems with some pain. I do have a pain pump so that helps tremendously 🤞🏼 MS does suck at times but I have adjusted accordingly and do quite well considering. Positive attitude is the name of the game and learning to adjust as it changes 🙏😉👍🏼🐾🐾🥰🤪

[pamgarner in reply to Kenu]

i do take dmt and am on ocrevus and doing well as cAn be just so tired of attitude adjustments but what choice do we really have?thanks

[twooldcrows]

sometimes we are our own worse enemy for we make things worse and don't really realize it ...like doing much more than we usually do and then the next day can't understand what is going on...at least i have ...when we feel really good we tend to do more and then suffer the next day but i am glad that i do the extra stuff for it does me good for other wise i can ketch myself just sitting around watching tv with my husband and then the next day not feeling the best for no exercise ..i am not talking like the kind that you do in reputation but just doing things...i just have to find things to do ...not really much but moving ...sorry you feel as if things are progressing ...i would talk to the doctor again and let him know just how you feel...maybe the meds need to be changed....good luck and keep on keeping on doing things ...whether it is right or not ...have some fun ....love and much happiness...

[pamgarner in reply to twooldcrows]

thank you,so informative,makes sense......helpful😋

[tnolan2006]

It's measured in various ways, like 25 meter timed walk, 9-hole peg test, or EMSS. As your brain reserve is depleted, you progress. Here's why - multiplesclerosisnewstoday....

[palomino27]

Inevitable deconditioning

[pamgarner in reply to palomino27]

yes..to say the least

[ahrogers]

I can relate. My MRIs have been stable for the 5 plus years I have been on Ocrevus but have noticed progression of symptoms. I had to get an AFO because the foot drop got worse. The weakness in my right arm/hand and leg have increased. I cannot walk as far without resting. However, when I go to the neuro I am in best conditions; have been resting in exam room after short walk from the lobby in ideal room temperature. When he does the exam I appear stable, I only have to walk a short distance for the exam and am wearing my AFO.I wondered why they don't count all of the brain lesions. My first MRI report when I was diagnosed just said greater than 10 so I thought maybe having more than 10 was some sort of diagnostic criteria. I also have lesions in cervical and thoracic cord. My new lesions were noticed in my cervical cord but considering how many are in the brain I doubt the radiologists take the time to compare and look to see if there are more than before, I think they just look for active lesions that light up differently. I don't think any of my lesions looked active on any of my MRIs.

I do get a bit depressed about my level of disability sometimes. Between the weakness and fatigue, a lot of things I would normally do without thinking about it make me feel it is too much effort. I signed up for the MS workouts and plan to get started this week or next. I have finally recovered from Covid mostly with a little increased fatigue still so feel I can handle exercise.

I am also going to have a sleep study soon. I am hoping the sleep medicine doctor will be able to figure out how I can get better sleep. I know my poor sleep increases my fatigue.

Maybe between exercising and better sleep I will have enough energy to enjoy the level of ability I do have.

[pamgarner in reply to ahrogers]

i hear you and can relate,thanks and i wish you the best also

[Neworleanslady]

My doctor said many of her ms pts say cowboy boots work like an afo for them so i might try some cute boots!I am also going to look for a water exercise program that i think i know of around where i live. I feel some of the things you’ve mentioned and i feel certain it’s because my strength has declined

[stam]

I am on ocrevus and it seems to work well for me. Even so, my diagnosis is PPMS but I am still walking and usually do okay as long as I don't do too much. I tend to get dehydrated, which makes me feel really bad, so I've learned if I start feeling that, to drink gatorade or something like that, and try to drink more water. I rest when I have to and I'm like you in wondering if I am progressing. I take a daily energy pill, armodifinil. Shopping is difficult and I will usually hit the wall after one or two stores, but only if they have baskets I can push ... okay, truthfully they are like my walker. I feel much better if I stay active and busy, but being careful not to overdo. Take one day at a time. Blessings to you!

[Tazmanian in reply to stam]

Carry a water bottle with you and fill it frequently

[pamgarner in reply to stam]

thanks for so many good reminders

[AriSmyelin]

I too have SPMS. I always worried I was progressing because I had such issues with nerve endings in my legs with tingling getting worse and specific spots on my arm were so painful. The pain traveled in my arm so horrific I couldn't move my arm without using my other hand with out wanting to scream or even touch my hand. That's when I learned. It was a UTI. I kept forgetting a stupid UTI can mimic a relapse so well there is no telling the difference without a flipping $6000 MRI. (At that point you almost wish you had a new lesion) In the past UTI's mimicked to a degree of fatigue, tingling and massive skin sensitivity. Wasn't till I got progressed to SPMS that I learned it could do what it did to my arm. I had to almost sling my arm because gravity hurt. But clearing the UTI helped. Later it happened again but with the other arm then again with my back right where I had lesions. That was part of the issue was it was always started where the lesions effected that certain nerve. So I learned with SPMS. ALWAYS BLAME THE UTI FIRST! I am a Chronic cather so I am VERY prone to them. UTI's are horrible for MS. I don't know if you tried it but I also found that CBD tincture (it's not THC) helps with the tingling and the rub on helps with the topical nerve pain.

[pamgarner in reply to AriSmyelin]

i forgot about uti"s,they can cause so many issues.that's for the reminder,and I do use cbd on my legs and cybalta really does help me with nerve pain.

[AriSmyelin in reply to pamgarner]

Of course. I still always forget. I wish I could get the stupid spasms to stop. They are so random it's hard to tell what does and doesn't help. I'm glad you found CBD to help. I know that is something up in the air with some people still.

[Sandydemop]

hey pamgarner i'm in the same boat. no new lesions but definitely functional deterioration so the doc says it secondary. I appreciate all the ideas from the group. I haven't tried cbd but i might. today i had spasms in my hips that were so severe nothing worked.

[pamgarner in reply to Sandydemop]

cbd works for me,and a product called theraworks,can buy it at pharms r walmart it is 19.99 works everytime for me and spasms and leg cramps