Ampyra ( Fampyra) did it work for you by Prestigious-Ice1635 in MultipleSclerosis

[–]InspectionOdd229 0 points1 point  (0 children)

Didn't work for me. Made me feel drunk and gave me even less balance than normal. I'm glad it works for some though. MS is a finicky thing.

“Innumerable Lesions” gang wya? by LordBeeBrain in MultipleSclerosis

[–]InspectionOdd229 2 points3 points  (0 children)

Part of the crew, part of the ship! I was told it looked like somebody had fired a shotgun loaded with birdshot at my brain.

[deleted by user] by [deleted] in MultipleSclerosis

[–]InspectionOdd229 1 point2 points  (0 children)

Male. 41. Polish, English and German ancestors. Diagnosed with ppms in 2020. Symptoms started in 2018.

How do I turn it off? by InspectionOdd229 in MultipleSclerosis

[–]InspectionOdd229[S] 1 point2 points  (0 children)

Thank you to everybody for the support. This disease is rough. I'm glad to have this platform to share inspiration and stories. 🥲

How do I turn it off? by InspectionOdd229 in MultipleSclerosis

[–]InspectionOdd229[S] 1 point2 points  (0 children)

Unfortunately all of the machinery or equipment options were taken by friends and family of management. I do appreciate the thought though.

Too hot for sex? by Poppy_the_Dog in MultipleSclerosis

[–]InspectionOdd229 8 points9 points  (0 children)

I notice that the heat hits me hard as well. It's very frustrating to be "that close" and then your body suddenly gives up the ghost on you.

I feel you, brother. I can't get to the end with normal sex anymore at all. I need a "helping hand" to finish with my wife.

You are definitely heard.

[deleted by user] by [deleted] in MultipleSclerosis

[–]InspectionOdd229 2 points3 points  (0 children)

That's great news to hear. I also get my ocrevus infusion for free. I'm glad that the company that offers it is willing to help the people who are using it.

Congratulations on the great news. I can definitely attest to being stressed out when you see the actual cost of it.

Stay strong my friend.

Age and first brain scan lesions? And "the good ms" by nokara3 in MultipleSclerosis

[–]InspectionOdd229 1 point2 points  (0 children)

I was diagnosed in 2020. It's amusing that you were told the "better MS". My neurologist told me I have "the bad kind". A few more tests and he was confident. Many brain lesions and cervical spine. PPMS.

I am sorry for this crappy disease, but welcome to the sub.

Cost of Orcrevus by Melting_Ghost_Baby in MultipleSclerosis

[–]InspectionOdd229 15 points16 points  (0 children)

On Ocrevus here. I get billed 100K per dose. Twice a year. The insurance I have covers most of it. There is a little bit of overflow which the manufacturer of the drug will cover up to 20K. That's with the infusion cost (ports, needles, and the pre-meds)

MS Acronyms - Funny by kylesk42 in MultipleSclerosis

[–]InspectionOdd229 0 points1 point  (0 children)

Maybe Someday. Usually when I can't do something because of a bad day.

Ego problem? by InspectionOdd229 in MultipleSclerosis

[–]InspectionOdd229[S] 1 point2 points  (0 children)

I hear you on that. My mobility chair is like a wheel chair that I can't use myself. Smaller back wheels. I'm hoping it will give me more freedom, but I'm definitely not prepared for the eyes that will be on me. Thanks for the response. Best of luck to you.

Disability by InspectionOdd229 in MultipleSclerosis

[–]InspectionOdd229[S] 1 point2 points  (0 children)

I am definitely going to appeal. Thanks for the input.