New Here, but 30-ish Years with MS

[Angler_Eric]

Howdy Y'all! 👋

I'm new here. I actually came here for the prostate cancer group and saw the MS group. The PCa was a very recent diagnosis - this past June actually. 😟

Anyway, I've been diagnosed with MS for awhile. It was long enough ago that I was in the lottery to go on Betaseron. I turned it down the first time, and took it the next time my number was called. I didn't stay on it long as I had a true allergic reaction. I've sampled a couple of the other DMTs.

Currently I'm on Ocrevus and just had my most recent infusion last week. I've been on it for several years now. The last three have been on the 2.5 hour infusion plan. Even though I've had them at home, it's nice not to be connected to an IV.

Chronic pain and fatigue are my most common MS symptoms. Fighting through them I've been trying to walk daily in hopes of improving my surgical outcome.

I'm a "retired" computer guy. I fish when the weather is nice. And I'm an amateur woodworker.

Tight lines!

[mrsmike]

Welcome to the group!

[Angler_Eric in reply to mrsmike]

Thank you.

[Fancy59 CommunityAmbassador in reply to Angler_Eric]

Hello and welcome Eric, we're glad you found us! We're always here to share our common experiences with you and to help you through the ups and down that MS throws your way. Make sure you give us your birthday. That way, we can sign you up for a birthday club. Then on your special day the family here can join together and wish you a Happy Birthday. Fancy59.

[kdali]

Welcome!

[Angler_Eric in reply to kdali]

Thank you.

[NorasMom]

Welcome to the club none of us wants to join! But you do realize that part of your "dues" will be to provide us with lovely photographs of your fishing spots and your wood projects? 🤪

[Angler_Eric in reply to NorasMom]

Haha! Thanks for having me and if I remember I'd be happy to share.

Here's a little black walnut table I designed and made. The top is from book-matched pieces.:

Black walnut side table with book-matched top and finish is about 10 coats of lacquer.

[NorasMom in reply to Angler_Eric]

Beautiful! Would you be willing to swap it for a passive-aggressive daughter who can bake?

[Angler_Eric in reply to NorasMom]

Thanks, but I'm full up on daughters. 😄

Does she have any great sugar-free recipes? In addition to MS and PCa I'm also diabetic.

[goatgal in reply to Angler_Eric]

Simply beautiful! A table to treasure. Where do you find your fine hardwoods? They often require a lot of searching to find a source.

[Angler_Eric in reply to goatgal]

Thanks so much Goatgal!

I happened across the top while scrolling through Etsy. I initially didn't buy it. I told my wife about it and the cost, she said, "why didn't you buy it?" Now I just need to 'happen' across another book matched set. After I finished the one we figured out we really needed a pair.

The base is dimensional material, also black walnut. While I can find it around, this material I also found on Etsy.

[falalalala in reply to Angler_Eric]

Beautiful!

[Angler_Eric in reply to falalalala]

Thank you!

It was a fun project. Except for the part where I had to re-learn trig to figure out the angles for the base. 😂

[Helpmeup]

Hi! Welcome to our group!

[Angler_Eric in reply to Helpmeup]

Thank you!

[Elizt3]

glad you found us. Welcome!

[Angler_Eric in reply to Elizt3]

Thanks!

[sashaming1]

Welcome

[Angler_Eric in reply to sashaming1]

Thank you!

[falalalala]

Welcome!

[Angler_Eric in reply to falalalala]

Thanks!

[hairbrain4]

Welcome! Your table is beautiful. My husband is a woodworker. He has recently made a few intarsia projects.

[Angler_Eric in reply to hairbrain4]

Thank you, thank you.

I don't know that I have the patience for an intarsia project. But I am planning one. I have other projects underway that I should finish first. Actually progressing depends on how I'm feeling.

[hairbrain4 in reply to Angler_Eric]

When you do get around to doing an intarsia project may I suggest that you start with a simple one like one of the rise patterns... jus' sayin'😁

[Angler_Eric in reply to hairbrain4]

It's funny. When trying a new technique I always plan on starting with something simple. But somehow my projects seem to grow. Maybe in size, more often in complexity... 🤔

Not everything turns out, but I have fun. Plus there is knowledge in failure. At least in woodworking I can reuse materials in other project.

[bxrmom]

Welcome to the group Angler_Eric ! Glad you found us! This a great group to ask questions, vent, and share accomplishments. Love the woodwork you have done!

[Angler_Eric in reply to bxrmom]

Thank you!

This feels like a very welcoming community. I'm looking forward to future interactions.

[DM0329]

Welcome! 🙂👍

[Angler_Eric in reply to DM0329]

Thanks!

[carolek572 CommunityAmbassador]

welcome to the forum, Angler_Eric ! You’re a busy person! Hopefully, you can find a bit of time and go to mymsaa.org for any information on everything ‘ms’. I look forward to hearing more from you, and in the meantime, Keep Smiling!

[Tazmanian]

Welcome to the group

[Angler_Eric in reply to Tazmanian]

Thank you!

[Cutefreckles72]

Hi, welcome. You will learn a lot from this group.

[Angler_Eric in reply to Cutefreckles72]

Thanks!

I hope so. I enjoy learning new things.

[mrsmike9]

Glad to have you here! My husband is a woodworker. If he ever finishes the things on our house, he'll get to play. After numerous years we finally have closet doors!

[Angler_Eric in reply to mrsmike9]

Thank you!

If I had more energy I would have sooo many more unfinished projects... 😁😇

[lbenmaor]

Welcome!

Leslie

[Angler_Eric in reply to lbenmaor]

Thanks!

[lbenmaor in reply to Angler_Eric]

You're Welcome.

[1yoyo]

How can you have an infusion without being connected to a IV?

[Angler_Eric in reply to 1yoyo]

Sorry, that came out wrong. Maybe this would have been better: I like the fast infusion even though I'm at home.

[1yoyo in reply to Angler_Eric]

I did not know we can do the infusion at home

[Angler_Eric in reply to 1yoyo]

As with all things, "it depends."

Home infusions have been available for awhile. 15+ years ago my wife was the nurse manager for a local home infusion company. But the availability seems mostly tied to weather or not insurance will pay.

It's a bit more nuanced than that. Some doctors aren't comfortable with at home infusions. You might have had a reaction in the past, or maybe concern that you'll be alone afterwards. But mostly I find it's limited by insurance companies.

Back around the time I was diagnosed and I was prescribed five days of steroids, my wife actually did the infusion. But after one particular course I had a very bad reaction and wound up in the ER. Because of my reaction my neurologist will no longer allow me to have steroids at home.

In the case of Ocrevus that was normally done in my neuro's office. Until the hospital bought the practice. Due to major miscommunication the hospital couldn't accept all the infusion patients. After many, many phone calls I was and to get an exception from my insurance company and have my infusion at home.

That was 18 months ago. I don't know if the hospital got things sorted out. Hopefully they haven't and I can continue getting infusions at home.

My best advice is to check with your insurance company first and then you doctor.

If you have other questions I'll try my best to answer them?

[Mollyabigail]

Hi, Angler_Eric! Welcome. The table is lovely. Good job! I am also on home infusions of Ocrevus. Just shy of 3 years into this disease, still working full time, and tired as you-know-what. We are glad you said 'hello.' I look forward to seeing you around.

[Angler_Eric in reply to Mollyabigail]

Thanks Mollyabigail!

[Lhallgrigsby]

Eric,nice to see someone like me with 30+ years with MS. I am almost at 40 years since my December 1983 diagnosis. You know there was no DMTs when I was diagnosed and I'm getting ready to start my 4th DMT, Rituxan

[Angler_Eric in reply to Lhallgrigsby]

Thanks Lhallgrigsby !

Oh yes, I'm well aware. None were available when I was diagnosed in '91. I was in the lottery for Betaseron, twice. Due to a true allergic reaction I had to switch to Copaxone. Switched to Tecfidera and stopped it because of "tomato face." (Not my description, but one I saw, appreciated, and connected with.) Now I'm on Ocrevus.

I was also on Rituxan for a time but not for MS. I'd been diagnosed with thrombocytopenia (ITP). This helped my ITP and my neurologist thinks it helped my MS as well.

Good luck with Rituxan!

[Lhallgrigsby]

Eric,nice to see someone like me with 30+ years with MS. I am almost at 40 years since my December 1983 diagnosis. You know there was no DMTs when I was diagnosed and I'm getting ready to start my 4th DMT, Rituxan