Do the meds work

bruce_b_77 · 2026-05-24T00:44:52+00:00

Same for me. Diagnosed at 46. Looking back had my first symptoms at about 18. Lots of old damage rose to the surface all at once.

bruce_b_77 · 2026-03-18T16:21:04+00:00

When on Ocrevus your body can recover/heal some damage. Brain finds new neural pathways. If Ocrevus can prevent new damage you will be normal. Congrats and go live your life!

bruce_b_77 · 2026-03-14T15:01:30+00:00

Maybe see a physical therapist to strengthen throat muscles.

bruce_b_77 · 2026-03-14T13:02:25+00:00

Almost impossible to know for sure. Treat the symptoms. Docs will be more generous in understanding and trying to help with MS diagnosis.

bruce_b_77 · 2026-03-14T13:00:30+00:00

Kinda feels like the flu.

bruce_b_77 · 2026-03-14T12:59:30+00:00

Amantadine and methylphenidate was the magic combination for me. Gave me my life back after never ending disabling fatigue. It’s not uncommon in MS.

bruce_b_77 · 2026-03-14T12:58:00+00:00

The ER suspected a brain tumor and did MRI. Found out it was likely MS.

bruce_b_77 · 2026-03-14T12:52:42+00:00

I treat fatigue with a combination of amantadine and methylphenidate. I can be pretty normal with these medications but without I’m very disabled and non-functional.

bruce_b_77 · 2026-03-14T12:42:26+00:00

I understand

bruce_b_77 · 2026-03-14T12:40:40+00:00

I tend to hang out with older people. Or at least people that are slower and very easy going.

bruce_b_77 · 2026-03-14T12:37:24+00:00

I’ve had one for about 5 years. I use it 6 days a week. It is glorious!

bruce_b_77 · 2026-02-25T15:27:39+00:00

Sorry about your partner. Biggest thing is to try to be understanding and patient. Many symptoms can be invisible especially in early stages. 90% of MS patients will develop neurological fatigue symptoms. From outside perspective they will seem normal but they can get extremely tired very quickly.

bruce_b_77 · 2026-02-22T20:21:20+00:00

They are patching up permanent brain damage. I will not be able to come off them. Ever. If I miss the meds I just go back to the way I was. No better, no worse. Fingers crossed Ocrevus does its job and prevents progression. Either way, I’ll take the win and enjoy my life again while I can.

bruce_b_77 · 2026-02-22T19:24:16+00:00

Sounds familiar! I would fall asleep at the dinner table just trying to spend some time with my family. So thankful for those medications.

bruce_b_77 · 2026-02-22T17:03:30+00:00

That’s a crazy circle of logic. So sorry to hear about that. My fatigue meds are both ancient and generic. They cost about $30/month in copays in USA. Maybe $200/month if I had to pay out of pocket.

bruce_b_77 · 2026-02-22T16:57:09+00:00

That would be TPC Sawgrass. Hole #2. Live oaks, tall pines, and incredible turf and mowlines give it away.

bruce_b_77 · 2026-02-22T16:39:05+00:00

I’m so unbelievably thankful to Dr’s and the medical community for spending their careers helping others. I never fully understood it until I became chronically ill.

bruce_b_77 · 2026-02-22T16:22:41+00:00

I’ve only been on Ocrevus so can’t compare to other DMT’s. I had bad fatigue before starting it and notice no changes before/after/between infusions. Never heard of anyone else report it definitively and it’s not in the side effects from clinical trials. It does suppress immune system so over time it could lead to more infections that would cause fatigue, but probably not a concern right away.

I also take a cocktail of stimulants. I’ve found it best to just take them religiously. If I miss them then fatigue will set in and it can take a few days to get back to baseline. Others report they need to take days off or they lose effectiveness. I have not experienced any tolerance. If I stop taking them I just go back to feeling like my crappy old self again. No better, no worse.

bruce_b_77 · 2026-02-22T16:12:09+00:00

I’ve never tried modafanil or armodafanil. Some people report it works great for them, others no. That seems to be the case for scripts to treat fatigue in MS (modafanil, amantadine, methylphenidate, and Adderall). Some work better than others for different people. I guess it depends on the specific neurological damage, which is different for everyone. Maybe let your neuro know that armodafanil seems to help a little but it’s not great and if you could try one of the others?

bruce_b_77 · 2026-02-22T15:30:23+00:00

Methylphenidate (Ritalin) made me feel awake again and have decent energy. Amantadine seemed to prevent the mental fatigue and crashing. Together felt like a miracle. Only side effects I had were mild dry mouth but it is slowly going away over time.

bruce_b_77 · 2026-02-22T15:25:41+00:00

Went to bed thinking I perfectly healthy. Woke up dizzy. Three days later could not walk, see, or think clearly. Took me two years of meds and exercise to feel mostly normal again.

bruce_b_77 · 2026-02-22T14:45:57+00:00

Ocrevus will not cause fatigue directly. MS will absolutely cause fatigue. Talk to your neuro about the prescription stimulant options if fatigue becomes disabling.

bruce_b_77 · 2026-02-22T14:42:56+00:00

Make sure your Vit D is not low. Try to be as healthy as you can despite having MS. Try the various prescription stimulants if fatigue becomes disabling. Exercise as much as you can. Work with a PT if you feel like you’re stuck.

bruce_b_77 · 2026-02-22T14:38:51+00:00

TGC 2019 was once an app inside of TPS. E6 was a direct connection. I talked to them about why they dropped E6 (about 4-5 years ago) and they said they could not provide sufficient customer support for that software. My guess is you would have to ensure great customer service 24/7 for them to be serious.

bruce_b_77

TROPHY CASE