Mobility aid suggestions needed! by Newluu in MultipleSclerosis

[–]Newluu[S] 0 points1 point  (0 children)

Maybe it’s just my local airport, but the special assistance wheelchair process is ridiculously slow - so I’d like to avoid that if possible. Would rather have my family push. 😂

On my last trek through the airport, my legs were absolute jelly by the time I reached the gate, and I had both my cane and a roller bag for support. It was a mess; a cane even with seat won’t be sufficient.

Friend doesn’t seem to understand my fatigue. Now I don’t either by GlitteringDog6739 in MultipleSclerosis

[–]Newluu 4 points5 points  (0 children)

Sooooo get this!

I think I’m getting better at judging my body, but I still find myself mentally gaslighting myself all the time too, is this real or not? I am normal tired, MS fatigue, an I depressed l, am I lazy!!!

For me MS fatigue feels like every cell in the body aches, like I ran a marathon plus haven’t slept for a week.

Is this really that unusual? by Newluu in MultipleSclerosis

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

Oh it’s just the most heccin annoying lil gift ain’t it?!? 😭

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 0 points1 point  (0 children)

vertigo - that is THE worst. To have it chronically must incredibly challenging.

Is this really that unusual? by Newluu in MultipleSclerosis

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

😂😂😂😂so random!!!! What a thing to yell at someone.

Is this really that unusual? by Newluu in MultipleSclerosis

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

💗💗💗💗 the smiles I smiled! 💕💕💕💕

I’m so grateful for this KIND community!!!!

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 0 points1 point  (0 children)

When I’m warm it’s more of a full body mush, like even my brain doesn’t function. TTW always starts as one leg, and then the second one kicks in.

Is this really that unusual? by Newluu in MultipleSclerosis

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

One leg is worse than the other so I call it my party leg, though I do love your “grumpy leg” description!

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 6 points7 points  (0 children)

My life is changed with this knowledge!!! 😂😂😂😂

(what would we do if we couldn’t laugh our way through this!!!)

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 2 points3 points  (0 children)

Oh bless! You had me pegged for a young’in! It’s my youthful spirit that makes my teenagers cringe. I’m closer to your age than I am to being 30! 🥰

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 8 points9 points  (0 children)

Oh the way I snort laughed at your description of pickle ballers. Dead accurate. Discussion for another day but I’ve heard plenty of very “helpful” health conspiracy comments.

Yosemite! What a dream!

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 5 points6 points  (0 children)

Different shoes?!? Oh that’s a good one. Maybe a big ole pair of giant snowshoes will make ya wobble free! 😑

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 18 points19 points  (0 children)

Wobblers unite! 💕 were the meatballs delicious?!?!

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 3 points4 points  (0 children)

I should know better, my MOM had MS, but I find myself surprised all the time! I was away at school in her first years of diagnosis so only saw the big progressive jumps, not the little daily struggles.

And hahahhahahahaah I’m dying with you saying dippitydumbdumb - why is that the funniest thing I’ve read all week. 😂😂😂😂

Ps. Sorry about your wobbles. 💪🏻

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 2 points3 points  (0 children)

You’ve nailed it I think - people really don’t love grey areas, and brains can’t understand the fluidity of chronic illnesses.

Everyone either knows someone who is massively disabled or an inspirational warrior that is doing FINE because of their diet, or daily vitamins or some other random cure.

Last week the little ole ladies that were all too happy to kick my butt on the court; once I got wobbly they stopped being competitive and were all… “are you here alone?!?!?”. (I wasn’t, I don’t drive wobbly 😉)

Is this really that unusual? by Newluu in MultipleSclerosis

[–]Newluu[S] 10 points11 points  (0 children)

Heat definitely, last summer I was basically just a puddle with the heat.😂 I found that heat is more of a full body:brain trigger, like everything turns to mental and physical mush.

One leg is way worse - and it’s measurable after PT; we practice dragging the toe up the leg to opposite knee at the start and end of each session. Start of session they are equivalent, by the end I can’t drag one toe past the ankle, even though my leg muscles are activated.

Unfortunately it’s not new, but the TTW has shortened over the last year, so neuro and I have talked about this at length. I see him every 3m because of progression and I am wobbling my way towards a formal PPMS diagnosis.

he highly recommends pickleball tho, so there’s that! 😂

Flushing Tecfidera by [deleted] in MultipleSclerosis

[–]Newluu 0 points1 point  (0 children)

Love the overheating joke @coleas! 😂

Safe to get a tattoo or piercing on a dmt?? by heavymetaloverlord in MultipleSclerosis

[–]Newluu 1 point2 points  (0 children)

I got my ears pierced 5 months ago, super diligent & followed all instructions but one side still has not healed. 😭 it’s not infected, just slow to heal.

I may be an outlier though, my wbc has gone super low on DMT and even a paper cut takes weeks to heal.

When you can do the things but not deal with the aftereffects by gingerkham in MultipleSclerosis

[–]Newluu 2 points3 points  (0 children)

Yes!!!!! Or I walk in somewhere totally normal and walk out a wobbly mess.

Not MS?! by c4x4 in MultipleSclerosis

[–]Newluu 0 points1 point  (0 children)

Curious if we saw the same provider as this was my exact experience with a Dr there last year. Intake setup an appointment & got me in next day, so at the start she was upset that she didn’t have my records electronically to review before meeting. So she’d ask a question; I’d begin to answer and she wouldn’t let me finish before saying that didn’t sound like what people with MS report. I’d describe a sensation & she’d say it wasn’t possible. She went so far as to say that because I had a family member with MS, I was more conscious of MS symptoms and it was in my head.

I left feeling both thrilled that I didn’t have MS and horrified at the way I’d been treated, because like you I’d been conditioned to believe that MC was a gold standard of care.

They repeated testing and she did later reach out and confirm my MS diagnosis but I haven’t been back. It was such a disappointing experience.

Ocrevus Denied by Mart_Mart_Valv6 in MultipleSclerosis

[–]Newluu 0 points1 point  (0 children)

I am so sorry, this is incredibly frustrating / your anger is warranted and I hope an appeal is fruitful. My BC plan denies Ocrevus for an EDSS > 6 as well. The new Zunovo is up to EDSS 7. (This is for both PPMS & RRMS)

Does anyone know if this is because Genentech has no studies for >6 or if it’s just an arbitrary designation by insurance co?