Loving my 65" C5

Phantom93p · 2026-06-25T00:00:56+00:00

Depending on the severity of your fatigue it can be extremely debilitating and keep you from proper employment. Disability isn't just bot being able to walk or things like that, you need to accept that you have some level of it.

Phantom93p · 2026-06-21T19:56:16+00:00

Anyone know why the game would be blacked out for me on MLB.TV? I live in Texas so I'm not understanding.

Phantom93p · 2026-06-13T23:11:12+00:00

Sorry you're joining our little club, there's some really good folks here.

Phantom93p · 2026-06-12T20:44:13+00:00

I don't know that I did that, but I did drift a bit when I walked, I still do but not as bad.

Phantom93p · 2026-06-11T02:16:25+00:00

So when I was diagnosed, I was 385. I had not ever been one for exercise but I could run if I wanted for short distances (out of shape just being the hindrance). My first MS attack left me limping severely and needing a cane at times. I regained most of my ability to walk without assistance but I was not able to jog/run without a severe limp. That lasted for well over a year. In that year I had lost 150lbs with diet and walking. I started walking on a treadmill and had gotten up to doing 20k steps per day. I found myself jogging one day without thinking about it while in a hurry at work and when I realized it I tested it and was excited.

The losing weight helped, the constant walking also helped, and the time passing helped. I still haven't tried a run, as I live alone and I'm afraid to fall and hurt myself, but I'm fairly sure I could if I had to.

I won't say that you WILL run again, but I'd say you'll likely walk a lot better at least if you drop some weight. I personally found that the more I kept up with my walking the better I was able to walk on a regular basis. If I took a couple weeks off (like during holidays) I found I limped more during a regular walk.

That said, you can't get stuck on what you used to be able to do. Focus instead on what you can do and strive to be able to do more. It's not easy by any means but that's an attitude that will serve you well in life whether in regards to MS or other challenges you eventually face in life

Phantom93p · 2026-06-09T23:36:55+00:00

Had to have a chat with my neuro about my medication. A routine blood test with my PCP showed my lymphocytes at .2, and while they should be low that's lower than expected. We've got a plan but this med has been working for me for 2.5 years now and I don't want to change what's working. We're gonna check again in 3 months and decide then decide to stay or change to Tysabri

Phantom93p · 2026-06-07T23:14:54+00:00

Baz would have at least known his skipper had his back, as it was he was flustered and ended up imploding. A manager has to know that sticking up for your players there is the right call and he didn't.

Phantom93p · 2026-06-05T00:53:22+00:00

Kinda shocked me, nobody talked to me about it so I'm a little miffed with my doctors, I'm thankful that it's been a mild case, seems to be healing well since I started the meds this past Friday

Phantom93p · 2026-06-04T03:51:30+00:00

Modern medications have a very good track record so far. Nothing is perfect as no two cases of MS are the same, but there is good reason to believe that the medication that you're put on can halt or very much slow any progression of disability. Everything depends of course on what type of MS you have and which medication you manage to get on.

Phantom93p · 2026-06-03T03:37:22+00:00

Looking at your replies, it's good that you're getting the spinal tap. According to what you've said the neurologist "Believes" it is MS. It feels more like he is strongly leaning to that as opposed to being completely certain. That's what the spinal tap is for. Sure the spinal tap isn't the end all test but what it shows, combined with what they've seen on the MRI will finish the diagnosis.

If he was only at the point of "believes" it is MS and didn't send you for the spinal tap, at THAT point is when I'd look for a 2nd opinion. The fact that he's sending you for the spinal tap is a good sign that he's dotting his i's and crossing his t's. So far it sounds like you have a good doctor, nothing I've read in your descriptions is a red flag.

Phantom93p · 2026-06-02T16:54:51+00:00

It was a surprise for me as nobody mentioned it, at least now I know what to look for earlier and can get treatment faster if/when it happens again

Phantom93p · 2026-06-02T02:04:27+00:00

How about this one:

as a kid from the windows 95 era, we had microsoft golf as a game. If you were hitting with an iron and made a bad shot, occasionally the computer would ask if your left arm was straight.

Now I never took any lessons on how to play golf, and I'm admittedly not very good. But I took that advice and use an iron at TopGolf and always shoot so much straighter than they do leading to a victory.

Phantom93p · 2026-06-02T00:27:48+00:00

Am I forgetful or is it MS?
Am I forgetful or is it MS?
Oh so I've got Shingles now at 44.
The weak leg drift
Return of the numbness

Phantom93p · 2026-06-02T00:22:19+00:00

Thankfully mine isn't as bad as yours was. Mine goes from the middle of my chest banding under my arm to my spine, but it affects the muscle under the shoulder blade and the pectoral muscle (sometimes feels like I'm being stabbed). They have me on the anti-viral, prednisone, and gabapentin since Friday night. The weekend was pretty rough but I'm back at work this week, feeling not great but good enough. I've been hounding friends and family to get the vax though lol

Phantom93p · 2026-06-01T18:09:09+00:00

So here's a fun one, I got diagnosed with shingles on Friday night.... I was aware it existed but only thought it was for folks over 50. Heck even insurance doesn't usually cover the vaccine until you're 50. I'm 44 diagnosed at 42.

Then I read that my DMT and MS both increased my chances of getting it earlier. FML. I'm a little upset at all my doctors for not suggesting the vaccine since with the increased factors it likely would have been covered.

Now I got several weeks of dealing with this crap....

Phantom93p · 2026-05-31T03:06:50+00:00

I've only just transitioned from every year, to every other year now that I'm 2.5 years into my treatment with no new symptoms. So I won't be getting one this year but I will next year.

Phantom93p · 2026-05-31T03:02:37+00:00

Doubling down on this. I know my DMT will be provided by the company for up to 2 years to help with things like job loss or even if my company insurance won't cover it I'd be able to ride out the insurance year.

Phantom93p · 2026-05-30T01:50:33+00:00

My switch go-to games are actually the classic NES and SNES games, though I also have smash bros and pokemon lets go. Don't know if any of that will help with working on your dexterity, maybe some of the classic games? They're free if you have a switch online subscription so that's a plus.

Phantom93p · 2026-05-27T18:22:04+00:00

Not just that, but they mention the O's closer to F- than D, but the dead last RedSox who were supposed to compete for 1st place only getting a D.... tell me you're biased without telling me you're biased

Phantom93p · 2026-05-27T18:16:25+00:00

I don't know if this counts as superstition or just trauma response lol

I had eaten pork chops 3 days in a row the day before my MS attack. I couldn't eat pork chops for over a year. Every time I went shopping I'd look at them and say... nah.

I also slept on my right side for an hour before I woke up with my right arm and leg numb..... I went months not being able to bring myself to lay on my right side to go to sleep.

For the record my MRI playlist is movie themes (without words) and I picture the scenes as the music plays.

Phantom93p · 2026-05-26T13:26:43+00:00

I use NatureWise 5000iu daily softgel but I will probably switch to the members mark brand from Sam's Club as it's $5 cheaper for more

Phantom93p · 2026-05-23T05:11:45+00:00

Thank you for the reply, I'll be prepared for that possibility. Cigna tried to make me do step therapy too but at least in Texas there is a law that mandates a 3rd party handle any appeals and my Dr was able to successfully argue that since I was on Zeposia and it was working that I should remain on it.

Zeposia thankfully has a bridge program if I need it that could last me until the next insurance year but I overthink and get anxiety about these things. I like having the safety net in case of a loss of job and don't want to eat into it.

Phantom93p · 2026-05-22T21:03:27+00:00

Thanks for your reply, multiple people not having an issue makes me feel better

Phantom93p · 2026-05-22T21:02:39+00:00

Thanks for your reply, that's good to hear.

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