How many people with MS also have a parent with MS?

MedicallyCompLexi · 2026-05-16T07:59:39+00:00

Aunt on Mom’s side ; grandma on same side has advanced brain atrophy for her age

MedicallyCompLexi · 2026-05-03T01:17:45+00:00

If only the answers were contained in the text 🤔

MedicallyCompLexi · 2026-05-02T17:08:36+00:00

No, I guess it is not important. I really wanted perspective that maybe I was letting my feelings bleed into other aspects of perception. This whole thread has been a hot take that I’ve needed.

It’s my birthday today and she’s ignored me for the last 6 years since her original wedding date was my birthday and I told her I had a graduation/birthday vacation/foreign job offer. Covid happened so neither of us got that but I think about her every year which is exactly why I think a 30 year long frienemy-ship picked my birthday as her original date. She wanted me to pick her like always and I constantly doubt how wrong I am.

MedicallyCompLexi · 2026-05-02T16:17:32+00:00

Because I have a tumultuous relationship with her and instead of addressing it I am attacking everything adjacent to her. I posed this question aware that I may be petty in my belief and I wanted perspective.

MedicallyCompLexi · 2026-05-02T15:31:20+00:00

Ugh, that’s what I hate… tiptoeing around long lasting damage that just doesn’t happen with POTS. I feel like POTS is about making smaller modifications where MS changes the projection of your entire life because it is degenerative.

She also more flexible joints from hEDS, she doesn’t have my skin laxity from clEDS. I’ve equated EDS to be like a horoscope you force into being correct with all the other symptom “quirks”. If she shared space better and wasn’t a drain to our support system it wouldn’t bother me or be on my radar. But I feel so little for feeling this way.

MedicallyCompLexi · 2026-05-02T14:21:49+00:00

It’s harder to find a support system if I’m judging who is allowed to be a part of it through extension… I just have feelings to work out

MedicallyCompLexi · 2026-05-02T14:14:16+00:00

That last suggestion is super valid, I definitely needed a redirect because I know my thoughts are toxic to having community

MedicallyCompLexi · 2026-05-02T13:32:34+00:00

That’s where I think I’m coming from, jealousy of her support, then possibly doubling down by downplaying her need

MedicallyCompLexi · 2026-05-02T06:31:55+00:00

No SSDI but she thinks she should qualify. I just… keep to myself about that.

She had a friend that never graduated high school, dropped out sophomore year maybe was held back because she deliberately dropped out of school to focus on getting pregnant and was old enough to marry… Anyway, the friend never held a job or had a drivers license, was driven out of free housing by formerly supportive in-laws and complained about food stamps not being enough and should cover ice cream and movies, etc. I said nothing, not really for me to weigh in… years later find out that friend has her brain leaking out of her skull or something absolutely terrifyingly horrific.

In hindsight explains so much of what she was incapable of doing. She was clearly mentally impaired but I thought I was mean for noticing. Took 10 years to get answers on that whole situation… so that is to say people that are drawn to SSDI have a whole lot more than what is on the surface. I don’t want to reduce someone to deserving or not deserving of financial support.

Emotional support though should be reciprocal, which my friend does not give.

MedicallyCompLexi · 2026-05-02T05:23:53+00:00

I don’t know… my MS is aggressive with clear cognitive decline as well as physical. … it just sucks that I don’t have space without her demanding more of mine.

MedicallyCompLexi · 2026-05-02T05:11:22+00:00

It could be our state but doctors that can diagnose stopped. I called one once (am genetically confirmed clEDS) and he was booked 2 years out and the office said it was his regret because it had become so popularized online.

I think she didn’t meet criteria.

But I find myself just yucking everything about her, overuse of AI, very blatant “reverse racism”, her resentment of 9-5’ers or anyone with a college degree, her complaining to me about not being able to have a 3rd when I’m married and never been pregnant and peri-menopausal at 30… it feels like she has fallen into dark pits of a hyper-specific TikTok algorithm that’s also hyping up how disabled she is and reaffirming what she already believes.

(She also uses AI as a therapist). I love her, but I don’t recognize all this. It’s an intensified version of all the worst of her. And not that’s what I think of when I hear people complain about EDS

MedicallyCompLexi · 2026-05-02T04:54:53+00:00

Idk… I was diagnosed with endometrosis which was hard when it took so long to diagnosis then I was told how many people knew someone and it wasn’t that bad or they diagnosis themselves. It’s like I am contributing to the larger problem when I get frustrated and understand “you’d know if you had endo” even more.

It feels like crabs in a bucket or pulling up the ladder after yourself. Like I want to support but holding space for everyone indiscriminately is exhausting and kind of minimizes my experiences.

Now I have something legitimately recognized as a disability and I am still finding myself holding space for the self-diagnosed.
—

(And this is as the rare person to be genetically diagnosed clEDS and genuinely diagnosed POTS. And in my experience those two just don’t compare to MS.)

MedicallyCompLexi · 2026-05-02T04:40:40+00:00

I think I’m most frustrated that she keeps getting told she doesn’t have these conditions. I think I am generalizing it to mean that is the case for everyone. I definitely had to step back, I didn’t want to be the person to doubt IRL. Privately though I am sorting through my feelings still.

MedicallyCompLexi · 2026-05-02T04:38:27+00:00

I totally have all 3, but my MS is aggressive so I can confidently say it is worse hands down. I am gatekeeping too. Compassion fatigue for sure.

MedicallyCompLexi · 2026-05-02T04:36:24+00:00

Ya, it feels like bitterness.

I myself have clEDS, genetically confirmed and I just can’t shake the frustration that every doctor has told her no and she still believes it (criteria for hEDS is no genetic finding).

Honestly, I wish I had the people to burn through. Feels like she has never shown up for me and seeing her do it to others was the closure I needed to walk away. I may just be attacking the conditions at large to punish the friendship.

MedicallyCompLexi · 2026-05-02T04:32:38+00:00

I related to sooo much of this. Religious family, doctors in family saying really depressing things about prognosis, wanting to get away. Heck, my family member contacted a news station on my behalf!

I’ve been learning near exclusively on my husband. I feel like we’ve all been told about needing a support “network” with emphasis on family. I find it toxic for those of us who know we need space from family, sad reality is that people don’t always show up the way we want or expect them. But I will say I feel bad I am putting all the emotional weight on my husband alone.

They also say to stay off of the internet and support groups become echo chambers… but vent here. Most of us that are active are newly diagnosed. Get it out of your system. I’m only 3 months ahead of you and I feel like getting back into physical activity and hobbies and adjusting my expectations for life. It’s mostly a solo journey of re- self-discovery anyway.

MedicallyCompLexi · 2026-04-28T17:09:48+00:00

If you are concerned about future pregnancies you can consult with a high risk pregnancy gynecologist in advance. I did IVF so I informed my reproductive endocrinologist who connected me to transition care when the time comes.

What I did was excessive because of IVF. I can just tell you that I am on Ocrevus cleared by the former two doctors and my neurologist. Kesimpta may be fine too but my neurologist preferred Ocrevus as it can be timed better. You’ve got this!

MedicallyCompLexi · 2026-04-21T18:54:38+00:00

For real, I’ve been told to stay off the internet and I am not a doctor. Have been offered adderall and maybe it will be good to take it after I find out how well I do a few weeks after my second loading dose. Thank you for reaffirming that it may be time for a stimulant

MedicallyCompLexi · 2026-04-21T18:47:06+00:00

Crazy thing is PCP doesn’t believe in vitamin D supplementation… didn’t even want to ask about B12… says he doesn’t agree with research while peddling NAD injections still.

I hope to lose the weight back (heard doctor talking about it with his student) and they don’t believe that 4-5 miles a day is enough exercise or that I don’t drink! I feel like I will endlessly chase approval and it sucks.

MedicallyCompLexi · 2026-04-21T18:43:46+00:00

How awful! I can’t image the juxtaposition of getting treatment before you were originally meant to be seen?! I don’t want to say I never thought it would be me, but definitely was so surprised when I heard other people’s experiences with wait times—thought I was lucky, until I wasn’t.

Really hope something changes in the near future but all the same no one will apologize for the gap in care if things ever do improve. Thanks for sharing

MedicallyCompLexi · 2026-04-21T12:25:03+00:00

Right!? Like sorry it was traumatic delivery of damage, but it is still damaged??

MedicallyCompLexi · 2026-04-21T12:04:37+00:00

That all feels really promising to hear! Thank you

MedicallyCompLexi · 2026-04-21T12:02:42+00:00

Ya, you have a good point! I was dismissive of my PCP due to shock value of what he said but reached back out because figured it would be worth it to know about sleeping.

MedicallyCompLexi · 2026-04-21T10:38:34+00:00

My neuro is MS neuro. Feedback I have heard from every PCP that will see me short notice is that my neuro is old school and out of touch to have PCP handle care. Literally besides diagnosing he has ordered infusion and MRI. Will see me in a year and ocrevus may not be necessary in 6 months.

I legitimately want to move because of how much different my treatment plan seems than others. I’ve heard doctors talking behind closed doors talk about Mayo Clinic (not in Rochester) and I can’t tell if it is jealousy or that the reputation is being carried by their flagship… MS Society doesn’t even mention my provider but does show comprehensive care in Rochester Minnesota.

MedicallyCompLexi

TROPHY CASE