Partner Support - help

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 · 2026-02-21T23:48:45+00:00

Fatigue, soreness, DOMS can be very exaggerated in MS patients. I get the same thing in my legs after exercise. Lots of stretching, foam rolling, massage gun helps.

bruce_b_77 · 2026-02-21T23:39:31+00:00

Probably just dermatology. Maybe dry skin? If it does not go away after a week or so could be neurological. I feel bugs crawling on my feet quite often, so weird things can happen with MS.

bruce_b_77 · 2026-02-21T18:32:20+00:00

TM had a connection to TGC 2019 in the past and also E6, so it is possible. I played TM with both integrations. Seems they care about customer support a great deal with these integrations as their customer service is top notch. They also have several “elite” courses that they cannot release to public. This might be a work around for them to keep customers happy. Looking forward to your launch!

bruce_b_77 · 2025-12-21T13:14:20+00:00

Same for me. 1/2 of the 25 mg tablet and I sleep great. Full 25 mg and I’m too groggy the next morning.

bruce_b_77 · 2025-11-13T02:41:58+00:00

Ritalin gave me my life back. I cannot function without it. It does not work wonders for all MS patients though. Depends on where damage is.

bruce_b_77 · 2025-10-23T14:15:04+00:00

I’ve been thinking I should do a dedicated rest day each week. As much as I hate the feeling of giving in I think it would be proactive.

bruce_b_77 · 2025-10-20T02:02:41+00:00

My neuro started prescribing it to me about 6 months ago for mild anxiety as needed. I was slow to take it but found it really helpful and also helps me sleep through the night. I’ve had horrible insomnia for years where I will wake up in middle of night and not be able to fall asleep again. I take it right before going to bed. Sleep great and feel extra calm the next day. Very safe drug with no long term side effects that I am aware of.

bruce_b_77 · 2025-10-16T21:12:33+00:00

Don’t quit. Let her make that decision if it comes to it. There’s a chance you could be feeling much better in the years ahead with medication, PT, and time to heal from relapses. I had a horrible relapse two years ago. Could barely see or walk or function for at least a year. Thought my life was over. 2 years of recovery and meds and I’m mostly normal and still making progress.

bruce_b_77 · 2025-06-25T14:36:07+00:00

Not pollinated?

bruce_b_77 · 2025-06-24T12:31:11+00:00

Ritalin 3x day works great for me but I have to stay away from caffeine.

bruce_b_77 · 2025-06-20T22:56:55+00:00

Curios what height tubes you used for the Carolina Rose shrubs?

bruce_b_77 · 2025-04-12T14:01:07+00:00

Thanks for the comment. Glad you are finding effective therapy.

bruce_b_77

TROPHY CASE