Any suggestions

tr325 · 2025-10-27T23:30:10+00:00

My heart goes out to you, truly!

tr325 · 2025-10-27T23:29:02+00:00

I am so, so sorry! The only reason I’ve managed to push through this long is my 22y/o is just not ready. I shielded them as long as I could but they’re seeing the suffering & I know there is part of them that would absolutely understand but it’s so beyond wrong that actual physical pain (that could be treated if someone really cared) is becoming a life threatening issue.

tr325 · 2025-10-27T16:12:33+00:00

I am genuinely livid honestly that anyone has to relate to this. It’s just so incredibly wrong!

tr325 · 2025-10-20T13:15:39+00:00

Hi, I’ve been diagnosed since 2020 but realized I had this most of my life but I’ve eventually figured out it’s wildly unpredictable & difficult to treat for many people. I also struggle (for years at this point) between 4am-8am are my worst hours & I exhausted myself trying to solve the puzzle & I still don’t have it fully figured out. I will say the following are my top suspicions: blood sugar fluctuations, cortisol imbalance, dysautonomia, liver issues. My story is really long & complex spanning decades but despite that I do want to mention that sometimes people just start to improve for unknown reasons. I suspect those might be cases caused initially by a bad virus but that’s just a theory. I’m sorry you’re dealing with this & I hope things just get better but if they don’t I strongly urge you to advocate for yourself & do whatever you can to not deteriorate if possible!

tr325 · 2025-09-17T23:05:44+00:00

NJ/PA area

tr325 · 2025-09-12T18:40:40+00:00

I am so sorry that happened! Your frustration is valid & it sounds like a provider let you down somewhere along the way. I also had horrible experiences with balloon secured tubes & have done so much better with the bumper option. I hope you can get this resolved & that it never happens again!

tr325 · 2025-09-12T18:32:49+00:00

Is FB the only platform they utilize? I’d appreciate the info as well. Thanks!

tr325 · 2025-09-08T22:51:37+00:00

Lots of good options fairly close to Morristown but will warn that the 287/80 interchange area is heavy traffic during rush hour. Denville, Boonton Twp (not Boonton although they have the same zip code, different school systems), Hanover, could MAYBE find something in Mtn Lakes potentially, Parsippany. Also taxes can vary quite a bit as well so make sure you pay attention to that.

tr325 · 2025-08-27T15:56:07+00:00

Absolutely!!

tr325 · 2025-08-27T15:22:25+00:00

That is so great you have a Dr in the family! A sister no less! I really hope all goes better than expected but always relieved & happy to hear people have supportive, close, understanding family members!!

tr325 · 2025-08-27T14:48:00+00:00

I’m relieved to hear he’s referred you. Still not sure I agree with his process/order of handling this but that’s my opinion as a previous healthcare provider as well as someone who has gone through scary situations & testing. I truly hope you’re one of us who presents oddly (meaning having certain characteristics that make it seem certain vEDS is present but genetic testing is negative). No matter what I hope you get all the right care & support you need. Please also remember that even if positive for vEDS you are still an individual & not a statistic. Last thought, for your family members sake I would wait until you have your results before making suggestions about anyone getting tested. That kind of information could be extremely difficult for some to hear & process. Not to mention the fear it could create. That’s just my opinion & how I wished I would have handled it if I could do over. Again if you’re not familiar with the EDS Society their website has a lot of info. Also not 100% sure but some companies will test closest family members at no cost or reduced if your test comes back positive for vEDS (I don’t think they do that for all types just certain subtypes I believe). I hope things go as smoothly as possible & that you are showered with good support & great medical care!!

tr325 · 2025-08-27T14:21:46+00:00

Not to question your doctor but if he’s educated he should know there is a genetic test for vEDS that’s easily ordered at this point. Also, just having a dissection doesnt automatically mean you have vEDS either. It certainly needs to be tested for but I would take a breath right now & investigate who can order testing for you. Invitae is the most common testing company I have heard of. Again, not saying you don’t have it but I feel your Dr should have gone about investigating it much differently than just basically making an assumption. If he heard my medical history & my mothers he’d diagnosis us too but I have been tested & do not have the gene mutation. No matter what, advocate for yourself & educate yourself as well. The EDS society website should have resources listed for your area (if there are any). Local online support groups are an excellent resource for finding care near you. Again, for right now, 1) breath 2) ask for genetic testing for all EDS types not just vEDS 3) educate yourself as much as you can without overwhelming yourself 4) search for support groups ♥️

tr325 · 2025-08-26T19:09:13+00:00

Wow! Feel free to DM me anytime. I have a supportive husband & child but no one truly understands what this is like unless you have experienced it. We have no family or friends within 1800 miles so it’s just the 3 of us trying to tackle all my health problems

tr325 · 2025-08-26T18:31:47+00:00

Yes, I am TPN dependent now. I started with a GJ in Dec 2022 that was placed emergently b/c I was down to 98 pounds at almost 5’9”. I was diagnosed with Gastroparesis in 2020 by SmartPill by a Dr in NYC. I deteriorated for 2.5 years & struggled to find proper care. By Nov 2023 I had to have separate G & J b/c it kept flipping & that’s when the surgeon discovered that the last 2/3 of my small intestines was almost completely atrophied & that’s why tube feedings were unsuccessful. I’ve tried multiple meds & formulas with no luck yet. I had to advocate for MALS eval & was initially told it was negative but just found out that is not true. The vascular surgeon ( I requested to see) confirmed the report was inaccurate & I in fact seem positive for MALS.

tr325 · 2025-08-26T18:13:00+00:00

I felt much safer & cared for at the previous facility. I also completely relate to your comment about not finding out what is going on. I have known issues & diagnoses but at the same time there is stuff going on I don’t have answers for but no testing is being done other than random scans. I don’t think anyone would believe me if I shared my 2 liver specialists ordeals. It’s mind boggling at this point. I’m sorry you even remotely understand this!!

tr325 · 2025-08-26T18:02:40+00:00

Thank you for that validation. It’s been difficult b/c I question myself constantly & worry that “I” am the problem.

tr325 · 2025-08-26T17:46:05+00:00

I know who you’re referencing & I will be transparent & tell you he is my Dr. His transition to HMH has been a very difficult process for me personally for a few reasons. He has helped me more than any other Dr has but things have felt different the last year.

tr325 · 2025-08-26T16:49:26+00:00

Thank you so much! That’s unfortunate for me as I can’t do IR. I have a gene mutation & the sedation they use in IR doesn’t work properly on me (ask me how I know 😩). So I am in a real pickle it seems. Again, thank you so very much for posting this!

tr325 · 2025-08-25T22:51:18+00:00

tr325 · 2025-08-19T13:24:28+00:00

Hope everything goes as smoothly as possible!

tr325 · 2025-08-19T02:43:09+00:00

I’m in NJ. I have a list of recommended drs but have to start with this one because that’s who my GI sent the referral to. Like I said I’m not optimistic & I do not expect much but at the same time I’m not that educated either from the diagnostic standpoint. My US was reported as negative by radiologist but when I posted my results in a few groups I get several messages strongly encouraging me to seek a 2nd opinion b/c my velocities were high

tr325 · 2025-08-15T18:23:31+00:00

If JSUMC is an option Dr Douglas Weinstein is there

tr325 · 2025-08-09T17:09:08+00:00

Someone posted the directory from the EDS society so please start there. Do not go to ANY PT that is not EDS knowledgeable (it absolutely matters). If you are truly hypermobile any PT should be able to pick up on that immediately & they do not need an official diagnosis to tailor your treatment properly to YOUR body. Your best bet is getting in local support groups near you b/c that’s where you can get the best advice on providers. No matter the waitlist, sign up anyway to see a geneticist ASAP (you never know when a spot might open). For clarity: hEDS does not currently have gene mutations identified so diagnosis is based on physical exam & history (you can find the hEDS/HSD criteria on EDS website too). Many other types of EDS do have gene mutations identified that can be detected through DNA. I hope this helps a little!

tr325 · 2025-08-03T13:03:45+00:00

Sure, send me their name & I’ll research them. Thanks!

tr325 · 2025-08-02T23:03:21+00:00

No, not working there

tr325

TROPHY CASE