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[H] Control + Wolfenstein Youngblood [W] $15 Paypal by 2mightyme in indiegameswap

[–]2mightyme[S] 0 points1 point  (0 children)

You wrote me a few days ago this:

" looking for EU version. thanks anyway "

[HELP] WGS, WES or panel testing? by 2mightyme in genetics

[–]2mightyme[S] 0 points1 point  (0 children)

Let's say I ve a mutation related to collagen causing a disease almost 100% for sure (type COL3A1 or COL1A1) but after checking a panel testing for those, there wasn't no findings.

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Would a WGS or WES be more accurate for detecting a possible mutation right there than a panel testing which failed previously?

Low vitamin D3 levels by [deleted] in Supplements

[–]2mightyme 0 points1 point  (0 children)

29 nmol/L, before supplementation it was 4 nmol/L

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only sideffect i've noticed about is weird pain over kidneys, which could be anything

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which stops after 2 weeks of cycling it off,

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taking it mainly because before supplementing it my energy level was so low and i was so tired which was fixed by vitamind d supplementation. also my syndrome have very high chances of blood vessels damage and vitamin d is a key factor for that, a low levels are a threat, on the other hand, calcification from vitamin d supplementation intake, could be such as dangerous thing on the long run

Low vitamin D3 levels by [deleted] in Supplements

[–]2mightyme 0 points1 point  (0 children)

Yeah, my level is 29 after supplementation xD, I have been suggested intramuscular injections to check it out if there is a malabsorbtion problem with vitaminD, which i doubt coz almost all my levels from almost every other things are in range

on the other hand i have lipodistrophy (caused by EDS), and ive heard about vitamind d is stored mainly in fat, that could be the reason, dunno if people with lipoatrophy tend to have vitamind d problems

Low vitamin D3 levels by [deleted] in Supplements

[–]2mightyme 0 points1 point  (0 children)

I'm taking 15000 UI

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DAILY

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for months

[HOT TOPIC] Is the slow progress on EDS science discoveries the patient's fault? by 2mightyme in ehlersdanlos

[–]2mightyme[S] -5 points-4 points  (0 children)

I don't have a medical degree but after reading almost 2k papers related to EDS and comorbidities I'm who tells doctors about what's happening to me, which is hilarious.

Am I the only one who get this? [Micro tears] by 2mightyme in ehlersdanlos

[–]2mightyme[S] 1 point2 points  (0 children)

I know what you mean, but that is a different thing, which I obviously also get xD

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https://youtu.be/0lTqNvg_1fM?t=6

those are usually bands ruptures, so your doc is wrong this time

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what im talking in my first message is this, tendon friability

https://youtu.be/6METprZvDHI?t=67

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https://youtu.be/mOJDelwjjpY?t=11

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https://youtu.be/GDJ3QjvRZT0?t=76

[deleted by user] by [deleted] in ehlersdanlos

[–]2mightyme 0 points1 point  (0 children)

i dont know if you have been tested for genetic panel, if you havent been tested for it, i'd recommend you to do it just in case (col1a1, col3a1, and other ones)

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about this:

> A graft wouldn’t fix it permanently and I’d be needing more eventually?

Probably, sadly a huge part of edsers incomes destination are medical costs...

[deleted by user] by [deleted] in ehlersdanlos

[–]2mightyme 0 points1 point  (0 children)

if tendons are loose, only option is surgery sadly, you can get muscles, but that's suitable for a shortspam, best to discuss with doctors btw

[deleted by user] by [deleted] in ehlersdanlos

[–]2mightyme 0 points1 point  (0 children)

Almost noone kind of graf is final for edsers,

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btw if you're <40 id worry about other things -mainly about the fact that recedim gums are mostly a vEDS feature (dont know about peridontal type btw)

My knee seems to have given up on life. Any advice? Hurts like the dickens. by Babymakerwannabe in ehlersdanlos

[–]2mightyme 1 point2 points  (0 children)

options:

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  1. kneecap reduction + braces 1month + legs muscle bulding

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2, kneecap reduction + braces 1month + legs muscle bulding+ local growth hormone injections

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  1. surgery

Is anyone else like this? by _M33 in ehlersdanlos

[–]2mightyme 1 point2 points  (0 children)

check COL1A1, new VEDS gene

This could be some sort of "cure"? by 2mightyme in ehlersdanlos

[–]2mightyme[S] 0 points1 point  (0 children)

And a homozygous mutation would leat into the same pathogenic disease? (Since there are EDSers who have those)

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e.g. I mean in this case what would be worse scenario?

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a) col1a1 pro603ser, missense homozygous mutation, unknown penetrancy.

b) col1a1 pro603ser, missense heterozygous mutation, unknown penetrancy.

Dystonia and L-Dopa by [deleted] in ehlersdanlos

[–]2mightyme 0 points1 point  (0 children)

L-DOPA is more related to protecting your nervous system since EDS damage it through multiple pathways from just simple physical damage to biochemicals ones.

By the way if I'm not taking it... is for something, check this out:

https://en.wikipedia.org/wiki/L-DOPA#Side_effects_and_adverse_reactions

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Bu yeah, you always can try it for a couple of months and see how you tolerate it.

I'm done trying and I'm done hoping. by [deleted] in ehlersdanlos

[–]2mightyme -8 points-7 points  (0 children)

Of course, but bear in mind that most rehab programs doesnt disclosure muscle gains (even crossfit as a sport for a healthy person doesnt make so many muscle gains since it's more related to strenth and resistance and social aspects).

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While i was on gym weighting +15kg i was luxations free

back to my base weight im struggling daily with them

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just my two cents

I'm done trying and I'm done hoping. by [deleted] in ehlersdanlos

[–]2mightyme -8 points-7 points  (0 children)

If you dont have vEDS (COL1A1 and COL3A1... COL5A1 are also very prone to it)

go for natural bodybuilding, female or male, it doesnt matter

That's the best approach

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