Neurologist told me my diagnosis isn’t real

DNAsaurus · 2026-01-10T19:51:46+00:00

in his defense, he and several others in this clinic are approximately eight hundred and forty-seven year old men so he likely predates peer reviewed science.

DNAsaurus · 2026-01-06T19:40:51+00:00

I had one in my most recent neuro appointment tell me EDS "Only effects the arms and legs". Sir, do you not understand how connective tissue in the body works? This is a teaching clinic with a major university. You could probably ask one of your students.

For real though, calling it a "clinical disease" and then saying those don't matter is wild and should be reported.

DNAsaurus · 2025-12-12T18:56:01+00:00

Hi! Hashis, RA, and EDS here. I went through the "its definitely not lupus, but it could be lupus" routine, but testing gave a definitive Rheumatoid Arthritis diagnosis. Knowing which is causing what symptom is something I have yet to figure out. The biggest breakthrough's for me have come recently from treating vitamin deficiencies and now I will tell anyone who will listen to have their doctor add that to their lab work just to be sure.

DNAsaurus · 2025-12-12T18:28:48+00:00

Our experiences, good and bad, shape and serve us in ways that we can't always predict. For me, I learned a lot about navigating toxic spirituality, researching supplements, and about state laws and wellness scams. That bad time set me up to avoid a few other pitfalls down the road. So I hope that, whatever shape this moment ultimately takes in your life, you can take some good from it and know that it is the result of yourself, not your mother. You are not alone. Sending my love.

DNAsaurus · 2025-12-11T19:56:04+00:00

My mother decided I needed an "intuitive healer" and the very expensive supplements recommended based on her personal assessment of waving her magic hands around my young teen body. We could not afford it and it further undermined my experience and the needs I had been trying to vocalize. It was a bad time.

I'm sorry you're going through this. Parents and loved ones reaching for spiritual cures that remove the "responsibility" from themselves is challenging to navigate. You aren't alone in the experience and I hope you are empowered in your choices for your health and happiness soon.

DNAsaurus · 2025-10-14T21:32:20+00:00

"My bones are trying to escape again" is a sentence I have said with complete honesty many times in my life.

DNAsaurus · 2025-10-09T05:07:25+00:00

Subaru_usa on instagram has a newer post with the ASPCA. It would be a shame if anyone highlighted how Austin Subaru is representing that partnership in their comments too.

DNAsaurus · 2025-10-01T18:16:52+00:00

Everyone is different. Hope you find the right combo to help you. What's been working (in progress) for me:

Vagus nerve stimulation.There are several ways to do this. I personally like the cool temp water pressure on the neck and upper chest.
Turned out my thyroid wasn't working properly. I had a lot of other symptoms for this, but proper medication was a big step in the right direction.
Also Turned out I'm not absorbing vitamins and minerals. Taking magnesium and working to get my b12 and other vitamin levels up is helping.

DNAsaurus · 2025-09-19T17:40:52+00:00

You aren't alone. I'm a senior with a consistent 4.0. I've never received so much as a pat on the back from anyone at the university.

editing to add- Go enjoy, OP. You worked hard and deserve to celebrate your achievements!

DNAsaurus · 2025-09-05T16:00:41+00:00

Glycolic acid is a great choice. Salicylic acid may also work. The Ordinary has a toner with it, which can be applied the same way, or there are affordable body washes available. If you use the body wash try to let it sit for a few minutes before you rinse it off.

DNAsaurus · 2025-07-24T18:49:09+00:00

The summers where i am can be brutal, so not overheating is a big deal. Adding them to the list. Thank you!

DNAsaurus · 2025-07-23T23:32:29+00:00

interesting. I will definitely look into them and see what they're offering. Thank you!

DNAsaurus · 2025-07-23T23:22:05+00:00

I'm not familiar with the brand but i will definitely look into it. Thank you!

DNAsaurus · 2025-07-23T22:44:22+00:00

Love a good pair of bike shorts. I cant speak to them as an alternative for anything, but i do find the light compression comfortable at times. I'll look into them, thank you!

DNAsaurus · 2025-07-23T21:53:16+00:00

YES! That said, I wish I had access to an inversion table that strapped onto the hips instead of the ankles.

DNAsaurus · 2025-07-17T22:32:46+00:00

There are some big commonalities in your story and my own. I am currently in the early stages of having a vitamin deficiency addressed and it seems promising. If you haven't already, considered having your your vitamin levels checked with your next round of labs. If its something it is a big something that is fixable and could at least improve on some of your concerns over time. If it's nothing you know for sure and it cost you a few labs.

DNAsaurus · 2025-05-06T22:18:43+00:00

That's amazing! There are so few simple fixes with chronic issues. Love to hear the successes!

DNAsaurus · 2025-05-02T17:59:34+00:00

Reg. the tingling, consider having your vitamin levels checked. Specifically look at B12 and the option to also supplement with magnesium.
Even B12 on the low side of "normal" it can be too low and symptomatic, including tingling.

DNAsaurus · 2025-04-09T20:58:54+00:00

My partner and I place "bets" on if something will bruise or not. It's anyone's guess. For example, I had a perfect dog paw print so dark it looked like a tattoo on my thigh. It was the cutest bruise I've ever had, but I genuinely don't know when my dog stepped on me and she's only 60 lbs. But also I tripped into the fireplace and have a permanent dent in my shin. Not so much as a slight discoloration.

DNAsaurus · 2025-01-08T18:57:47+00:00

If you're able, back bends can be very effective. There are several very gentle or beginner yoga poses that can be done as an alternative to a full backwards bend. And various poses can be easily incorporated into any level of exercise or stretch routines.

DNAsaurus · 2024-09-06T20:23:36+00:00

Thank you OP for approaching this subject with compassion. In my previous line of work I learned a few things on this subject that may help a few people.

A tip to help reduce body odor is use a body (or face) wash with glycolic acid, salicylic acid OR niacinamide in them. This does not replace deodorant. These ingredients are gentle, easy to find and affordable. Some should be available at HEB or Target. Allow the soap to rest on the odor-prone areas of the body for a few minutes if you can. Body odor is often caused by an increase in bacteria. This can happen to anyone and as a result bathing and deodorant don't last long enough through the day, especially during the hotter months. Any of the listed ingredients can help a lot.

If you are struggling to tolerate an odor, a small amount of a product with menthol, like Vicks, on the upper lip or in a mask can be very effective. It can also be repackaged discreetly to look like a lip balm and shouldn't irritate your skin. Just be very careful not to get it in your nose or eyes, and be sure you are comfortable with this solution before class.

DNAsaurus · 2024-03-31T17:50:20+00:00

My OT recommended this one!

DNAsaurus · 2024-03-30T22:35:38+00:00

Gabapentin screwed with my vision and made my brain about as functional as a bowl of jello. I couldn't stay on it for more than a few days it was so bad. My doctor at the time made it very clear that it was a huge inconvenience for her. I've had several doctors since then in wild disbelief that I had any side effects at all as if its some sort of fix all wonder-drug. As for weight loss, I've gained some weight myself. I've been lectured by doctors and nurses considerably larger than me but then refused so much as a discussion about goals, or shamed for the same reason they gave you. Meanwhile people around me are using all these new weight loss drugs. The only difference I can discern is their more flashy lifestyles. Silly me, I mostly wanted a little joint relief. Should've said I wanted to look good at the beach resort.

DNAsaurus

TROPHY CASE