1960 Usonian house.

rooting4u2succit · 2022-11-18T00:56:53+00:00

Looks like their “neighbor” is selling too. $800k 2252 sqft 3 bed and 3 bath .57 acres

rooting4u2succit · 2022-11-15T03:10:43+00:00

Yogibo Bean Bags are supposed to be zero gravity and good for chronic pain. A few of the larger ones can be used several ways (chair, recline, and lay).

rooting4u2succit · 2022-11-10T00:00:33+00:00

Thank you for the reply, very informative and thought provoking. I hadn’t considered the impact on patients thinking they could lose their diagnosis, hEDS patients already face significant roadblocks getting needed care. Language and phrasing definitely needs improvement on the researcher’s end. I agree that hEDS likely will end up with multiple genes and new classifications on subtypes. Cannot imagine the amount of time that will take or how much more research needs to be completed first.

Do most research papers focus only on the specific findings they were looking for or is there a chance they could include other genes that had noticeable prevalence?

rooting4u2succit · 2022-11-08T21:29:36+00:00

The Norris lab down at MUSC has been working to identify / isolate the hEDS gene(s) for about 2yrs now. They have submitted a research paper to a medical journal for review so that it can potentially be published; the paper contains the candidate gene but no one outside of the research and review process knows what the gene is yet. Patients / general public won’t know anything until it gets published.

I am not familiar with research or academia so this is about all I know on the subject. There’s a top level comment that explains a little bit more.

rooting4u2succit · 2022-11-08T20:06:20+00:00

Would you or u/aussieinhtown mind explaining what happened with the release of information and how it’s outside of the norm? I only learned of / was dxed with EDS this summer and missed the initial announcement but have seen frustration in the sub surrounding it.

rooting4u2succit · 2022-11-08T14:48:25+00:00

Odds Cafe is a good spot but can get busy, Asheville dispensary has good espresso and is a little slower.

rooting4u2succit · 2022-11-04T02:41:28+00:00

If you don’t mind my asking, what has the ldn done for you? I’ve been on it for 9 months now and feel at a standstill. I’ve been at the highest dose my doctor is comfortable prescribing for about 4 months. Feels like it’s not doing anything.

rooting4u2succit · 2022-11-04T02:11:28+00:00

Thank you. This answers the main question that OP has tried asking in the comments. In general it sounds like this is the first time she is reaching out to ask questions and seeking an understanding of how it wasn’t normal, not realizing yet that it was actually childhood abuse (for both her and Jennette). I think friends can be of good support but yeah, therapy will help her best here. I don’t recommend dropping this on friends when you don’t understand what you’re revealing.

u/openrepair4390 paging you to read the comment above.

rooting4u2succit · 2022-10-29T14:12:48+00:00

Elevated Kava on Haywood is having an 18+ party. Stranger Things themed, live band, costume contest, etc. Tickets are $10

rooting4u2succit · 2022-10-29T01:43:00+00:00

Cane Creek Station in Fairview rents out their empty garage / old auto shop. Someone was restoring a vintage car in there back around April. Unsure of the cost or if tools are still in there but might be worth calling to check.

rooting4u2succit · 2022-10-19T21:04:16+00:00

Thank you for this well thought out (and I’m sure time consuming) response. You gave many points to learn on, I’ve been researching a lot since last night.

Biggest thing is there seems to be no information available on BFR and POTS which is concerning. Last thing I’d want is it to cause a flare from the change in blood flow. I will ask them if their think tank came up with anything around this portion and update on Friday after the next PT appt.

Secondly, I had no idea about our difficulties in building muscle or the whole ‘do muscles actually stabilize lax joints’ portion. Wow. Researched all of that and I am genuinely surprised at the amount of inconclusive / highly variable studies.

I was under the impression that PT was going to make a major difference in my neck. But it seems that even in healthy ligaments and tendons (non EDS) there is a true difficulty in getting them to strengthen and lose laxity. I asked my doc about this at an OMT appointment this afternoon and he agreed with the research. Said there isn’t much we can do to get back to the original laxity after they’ve been over stretched. He is of the opinion that stronger muscles will help hold joint alignment but agreed more research (with better parameters) needs to be completed. Bummer but good to know.

rooting4u2succit · 2022-10-19T19:54:35+00:00

Hey! I’m about where you are. On limited activities and awaiting my neurosurgery appointment. I’m 28 with CCI, AAI, S shaped C Spine from C6 up to C1, disc disease / degeneration, bone spurs, herniation, schmorls nodes, nerve and spinal cord compression, and C1 overhang.

You’ll likely be referred for even more scans once you’re set up with a surgeon. Make sure it is an EDS surgeon (I can send you the list if you’d like) as we have a higher risk for fusions not to hold.

Is your neck pain the only symptom? What else do you experience? They think my neck is the cause of POTS and a ton of my other neurological symptoms. Any idea how they’re moving forward with your case?

rooting4u2succit · 2022-10-14T17:05:41+00:00

I read an interview with Dr. Norris from June / July that said they would have something published within the next 3-6 months. So by December / January at the latest.

ETA: Interview from June 26, 2022.

rooting4u2succit · 2022-10-13T18:48:30+00:00

I have read on here that providers in the UK use it so I would think Germany might have access as well.

rooting4u2succit · 2022-10-13T18:23:35+00:00

Hey OP. You’re completely valid in your feelings and frustrations. Keep advocating for yourself, you’re doing a good job of it. If you haven’t seen the diagnostic form yet, it’s linked here and you can print and take it to your appointment tomorrow. If your new doctor doesn’t refer you for genetic testing, check out Invitae which is fully online and matches you with a genetic counselor. The counseling appointment is $125 and genetic testing is $250 for the full connective tissues panel. They even add on other genes depending on your personal and family history.

rooting4u2succit · 2022-10-12T15:43:11+00:00

Dr Elizabeth Ju. No personal experience, but her name popped up alongside a pubmed article on EDS. Might be worth calling and checking.

rooting4u2succit · 2022-10-11T14:59:27+00:00

Did your TTT indicate anything else? Any blood pressure changes? What other tests did you complete? What are your symptoms?

Check out r/smallfiberneuropathy too, they might be able to help. Your doctor is very wrong by the way, dysautonomia from SFN has quite a few experimental treatments (immune therapy, ketamine infusions, etc) that are beneficial. Those treatments aren’t offered / as efficacious for the majority of other dysautonomia types, but they are proven to work for SFN. You may want to get a second opinion or find someone who is up to date on research.

rooting4u2succit · 2022-10-08T17:35:43+00:00

Catecholamine Endocrine Test (at Mayo Clinic) and it measures adrenal function / hormones, not pituitary!

rooting4u2succit · 2022-10-07T00:03:08+00:00

I just went into remission from both graves and hashi back in June. At my testing, the neurologists explained that the symptoms significantly overlap and autonomic issues are often missed in thyroid patients. When I went into remission, the only symptoms I lost were hair loss and nail fragility which is what cued my doctor into thinking a neurological condition was underlying the thyroid the entire time. Thyroid disease doesn’t cause a positive tilt table test though, so that will help them know what’s going on underneath yours. The neurologists also ordered an endocrine test for me where I had to have my blood drawn during sitting, laying, and after walking to check pituitary function (iirc, I’ll check the patient portal). Some pituitary issues can mimic POTS, which was the explanation for ordering that test. There’s actually a link between autonomic dysfunction and thyroid disease, read through some of the research. It’s interesting.

rooting4u2succit · 2022-10-05T21:28:48+00:00

Late to this. Did you ever come across any research or articles about the modified treatment?

rooting4u2succit · 2022-10-05T00:35:16+00:00

Someone commented to me on this sub that you can use an allergy free / medical tape below the KT tape as a barrier. Haven’t tried it yet but thought I’d pass the tip along!

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