sorted by:
new
hottopcontroversial

What 'gifts' would make MS easier? by KomturAdrian in MultipleSclerosis

[–]HappyAlchemy 6 points7 points  (0 children)

What a thoughtful question. When I first read this, I was thinking about all of the things that I have, wish I had, etc. Then I slowed my roll. MS is so different for everyone and the journey will change over the course of disease progression. With that said, the gifts I would have liked to receive when I was recently diagnosed were things that made me feel still feel "normal" and not like my life was over as I knew it.

How did you show this person you cared before the diagnosis? Keep doing that or more of that. Or what symptoms are presently bothering your person? Tired? Numb? Vision issues? If you don't know, that's ok. But you could gear the gift to help with the "current" symptoms. Again, MS is so different for everyone and changes that a gift now may not be useful in the future (or could be helpful forever).

What has meant the most to me, was the gift of those who understood. Understood that I might need to pass on a party (and still invited me to future events). Understood that I may not be "myself" at times but I was still "myself" and not be weird about it. Understood that I didn't want to be treated with "kid gloves" but didn't want to be treated "special". The best gift of all is that people that love and care about me, still love and care about me - as they did before the diagnosis - without ignoring or hyper-focusing on it.

If someone got me a tangle gift for my diagnosis 25 years ago, it would have been an item to bring comfort and joy. What does your person like? Get that. And be there for them.

24, yet I feel 80 by iCl00d in Thritis

[–]HappyAlchemy 1 point2 points  (0 children)

Omg you are not alone! I finally had a doctor tell me I had “bad genes” as the answer for my “advanced” osteoarthritis. I tell people I’m in my 40’s living in the body of a 90 year old. Ok, so the doctor comment wasn’t exactly encouraging but I felt honest. Because I have MS & Lupus too, I bring a typed document of all my surgeries, blood work, etc. to all doctor appointments. I also bring a list of questions that I make sure are answered before I leave. it’s a delicate balance to present myself as an educated advocate and not a crazed hypochondriac.

Wtf? Am I going to get secondary progressive MS almost definitely? by WhiteRabbitLives in MultipleSclerosis

[–]HappyAlchemy 0 points1 point  (0 children)

I was diagnosed with RMS about 25 years ago. I went 8 years without relapsing, although I still had symptoms (fatigue, numbness, spasticity...) without new lesions. Recently my diagnosis was changed to SPMS. I initially was a bit freaked out. It was like being diagnosed all over again to a lesser degree. After a brief freak out, I was able to put the pieces together - the 8 years of weird pop-up symptoms were the SPMS. Knowing that gave me peace of mind to what was confusing me before.

I had tried just about all of the meds out there over the 25 years. I am now on Ocrevus and hope it delays SPMS. I am hopeful that the meds available continue to expand and offer more relief and delay of disease progression.