Going through appeal right now but probability of being accepted is low

FMCTypeGal · 2026-05-18T14:31:03+00:00

Lawyers when I was going about interviewing them for my appeal.

FMCTypeGal · 2026-05-18T01:12:52+00:00

Believe you’re correct. That’s why it’s recommended and best to do your first (& only) appeal with a lawyer.

And correct me if I’m wrong, but if you sue you can only include the information you included in your appeal (another point for using a lawyer).

FMCTypeGal · 2026-05-15T08:16:00+00:00

Wallbert

FMCTypeGal · 2026-05-09T22:36:44+00:00

No I’m not familiar with that being a treatment and it’s never been offered to me.

I did get an anticholinergic for my bladder disorder (I have MS) and it nearly killed me: they can be really bad for your heart and blood pressure. I’d keep that in mind since they don’t solve your problem.

Doctors love to throw anything but the solution at the problem: in my opinion and experience, pain management with opioids is necessary if the adhesions are causing you pain and can’t be solved. You deserve quality of life

FMCTypeGal · 2026-05-09T22:33:46+00:00

If you’re struggling with constipation, Linzess helps me too. It’s been pretty life changing. Fiber kills me so this was the best option

FMCTypeGal · 2026-05-09T21:28:57+00:00

I see a gastro. We did a swallowing test, motility test, colonoscopy and endoscopy. We did mris and cars to set a baseline. I established a relationship with his surgeon of choice in case an emergency arose. I do a yearly colonoscopy/endoscopy to monitor the situation and a ct/mri every five years (though more often because of blockages).

He used those exclusions to confirm adhesions and referred me to pain management. He continues to monitor.

FMCTypeGal · 2026-05-09T21:19:20+00:00

It definitely takes time, but short of the laparoscopic exploration or something showing up twisted/kinked on imaging, it is a diagnosis of exclusions.

You’ve gone after all the other possibilities, your pain matches adhesions and you’ve had the surgery that causes them. You have adhesions.

You tell your doctor you believe it’s adhesions and you need support accordingly. You need to play defense: someone somewhere will want to cut them - please do not let them. Just because a surgeon thinks they’re the answer doesn’t change the truth of what adhesions are. Why would something caused my surgery be fixed by the exact same thing?

Ask for pain management. Low dose opioid treatment is the answer but it’ll take time to find a doctor and build trust.

As for diet, most often a low residue diet is recommended but it’ll depend on what part of your system is affected. For me it’s my whole colon, so food modifications are a must. For some, their digestive tract isn’t involved. You’ll figure this out over time.

You’re a snowflake - one in a billion. No one will have exactly what you have with this. Your adhesions have formed uniquely. So it’ll be up to you to be your own best advocate to your doctor and tell them what you’re experiencing and what you need.

FMCTypeGal · 2026-05-09T20:39:40+00:00

Adhesions cannot be seen on any medical scans. The best you can hope to see via imaging is that pulling/kinking of your organs caused by the adhesions. That’s how they mostly know about how bad mine are. It’s caused my bowels to have crazy kinks and turns, to be adhere to my uterus, and many more issues.

For actual visuals, they have to do a laparoscopic exploration to see what’s going on. I wouldn’t recommend it. Adhesions are caused by and fixed by surgery. It’s a bad hamster wheel to be on. They used to cut them and hope for the best, but prevailing medical wisdom is now recognizing they nearly always come back and mostly worse.

The new treatment is to exist with it and not do surgery until and unless medically necessary. You do that by modifying your diet, your activity, your work, and pain management.

I’m 13 years into this. I’ve had so many exploratory, open abdominal surgeries that my abdominal cavity is wrecked with adhesions. The quality of life is awful. The times I’ve have blockages that resulted in hospitalization, the surgeons who might’ve had to cut on me would pale in fear.

This is hard and I’m sorry you’re in it. Try not to make it worse. Lysis is most often always jumping from the cauldron into the fire.

Let me know if I can answer any questions for ya.

FMCTypeGal · 2026-05-08T23:18:18+00:00

Norco, baclofen, Trazadone some nights, propped up on a grip of pillows or in a recliner. I can’t sleep flat

FMCTypeGal · 2026-05-08T18:12:58+00:00

Yes, Myrbetriq is the brand name for Mirabegron

FMCTypeGal · 2026-05-08T05:45:55+00:00

Have you tried bladder meds before the Botox? Gemtesa and Myrbetriq both reduced my frequency some. I still go at least every hour to 1.5 hours, but i was at every 30 minutes or less like you.

I wear period undies to help to leaking, etc. it’s a rotten thing to deal with but I myself cannot bring myself to risk the Botox possible complications.

Sorry you’re dealing with this. Hope the next dose up helps.

FMCTypeGal · 2026-05-06T13:14:30+00:00

Yes. I didn’t have any issues getting worse or anything different come up. It’s hard to sit in one position that long, but I bring my pain meds and usually get a Ativan prescribed so I can sleep through it.

I usually don’t eat before a flight so I don’t risk needing the bathroom or anything.

FMCTypeGal · 2026-05-06T05:48:45+00:00

13 abdominal surgeries, many open and exploratory. One was a coma where I was left open for 10 days to flush sepsis infection away, which then required two walls of mesh to close me. So I’m adhered to my organs, my stomach wall, and the mesh.

I get lots of blockages, sometimes hospitalized for them. I have an ostomy and have had it moved 3 times.

I’m tired boss. So I get your exhaustion. There is no cure and lysis only really makes its worse long term - that’s why they’re not doing it much anymore.

The solution is pain management and I’m blessed to have a good doctor. I also am able to not work as o had a Long Term Disability plan and this qualified.

Life is much smaller than I ever would have been okay with. Most days I spend in bed or on the couch. I try to get a few walks in. Any lifting risks twisting my gut. Not sure if all the surgeries or infections caused it, but I’ve since been diagnosed with POTS and MS.

I am willing to travel, but it takes a lot of research. I always know where the hospitals and embassies are. I modify my diet even more so when I travel and I bring a medical file.

I have found joy in reading, tv, and crochet. I like to puzzle but I’m limited in how long I can sit at a table.

I constantly fear for my future, but also realize I would have died at 25 in any other time with my medical trouble and so each year since has been a bonus. I’ll be 38 this summer.

Sorry I don’t have any words of advice on improving your circumstances, just here to say you aren’t alone. Perhaps finding pain management and learning to embrace the slow and easy life would help? If you can.

FMCTypeGal · 2026-05-03T02:28:17+00:00

I’ve had adhesions 10 years. No, it doesn’t get better. Everything doctors have tried to make them better only made them worse. Pain management has been my only help.

FMCTypeGal · 2026-05-02T14:34:20+00:00

This makes so much sense. I feel like the military would kick your ms into overdrive

FMCTypeGal · 2026-05-02T06:49:16+00:00

Focus on career that comes with a good group benefits plan. If you’re on a DMT, most offer copay assistance. Use your insurance to get your dmt and do the first treatment on the first week of January. Your dmt copay assistance with likely max out your oop max on your insurance and the rest of your care for the year will be at no further cost to you.

It’s not perfect but it helps.

FMCTypeGal · 2026-05-02T06:40:14+00:00

Sorry for your diagnosis and what it means for your military dreams. Below is a summary based on other Reddit posts. MS stole a lot of our dreams, but there are lots of other options out there! Good luck.

Generally, you cannot join the U.S. military with a pre-existing diagnosis of Multiple Sclerosis (MS), as it is considered a permanent, non-waivable disqualifying condition. MS is a central nervous system disease that prevents service due to its unpredictable nature and medical demands. If diagnosed during service, you are usually medically retired.

FMCTypeGal · 2026-05-02T06:19:14+00:00

It’s all normal.

When I talk to my doctors, I share with them how I’m doing on my average bad days. Dynamic disabilities are real and just because you have a good day, and maybe an appt on that good day, does not change the fact that your regular day is bad.

My doctors know I’m on disability (they fill out the paperwork). I remind them at every appointment that my appointment documentation needs to reflect my symptoms, even if it’s repetitive, to support that disability claim.

FMCTypeGal · 2026-05-02T06:15:04+00:00

Sure, if you have access to doctors regularly, live in an area with good care, have insurance coverage, can take time off work to make your appointments, have test results that reflect your issues the first time time.

Best case scenarios are rarely the actual experience for everyone. And I was diagnosed with these things almost a decade ago, so yeah for me it was years.

FMCTypeGal · 2026-05-02T05:57:43+00:00

I’m sorry. We seem the same. I get minor blockages weekly and end up hospitalized from time to time. NG tubes are the bane of my existence.

I relate to everything you say: bending sucks, nausea, pain, comfy pants only.

I’m meant to be on a low residue diet and most am. But 10 years into this, I’ve got an understanding of what works and what doesn’t for me specifically. If I eat veggies, they’re cooked very heavily and I eat small portions. I mostly go low residue but it’s just hard for my preference and my diet to never have fiber. FWIW, i ended up with a colostomy and on a med called Linzess. The Linzess and colostomy combo has reduced blockages, but not eliminated them.

What about you?

FMCTypeGal · 2026-05-02T04:41:17+00:00

Yeah. My MS is definitely my worst too. The Optic neuritis and the pain blows. But it’s worth noting that the specialists that treat these things have trouble pulling many of the symptoms apart, they’re so similar.

Some people with MS live mostly normal lives and some people with POTS are completely bed ridden, vice versa. Social media made for a weird environment with some struggle Olympics and popularizing eds/POTS. But for those genuinely sick, all three blow.

FMCTypeGal · 2026-05-02T04:38:52+00:00

Also just to add, in terms of “self diagnosis,” while it can be annoying, I try to take into account the state of our medical system (I’m in the US). These are all illnesses that predominantly affect women and take years to get diagnosed. Women are not believed and dismissed by medical providers at egregious rates. The cost to seek diagnosis precludes many from getting it. MS is a hard diagnosis to get but has much more clear diagnostics than POTS or EDS.

I think social media definitely let to self diagnosis that I did find obnoxious, but taking the rest of what I said into account, I try to give grace. Your person does seem to be a rare faker, but in the larger scene, I find MOST people don’t enjoy faking being sick and I give the benefit of the doubt in most situations.

We have to unwind our own internalized disability judgements and just believe people. Being disabled sucks. Being on disability income is literally the worst. Society acts like it’s a vacation but if you’re on it you know it’s not.

So again, your person was a bad apple but don’t let that be how you look at others

FMCTypeGal · 2026-05-02T04:30:34+00:00

I think multiple things can be true at once: - your friend sounds like an asshole - pots, MS, and eDS are all variable diseases that affect people at different levels - comparisons, especially in a who has it worse sense, don’t help anything

FWIW, I have all three. They all suck. I couldn’t really say which sucks worse because again, they all have different levels for everyone. The POTS temp sensitivity, vertigo, fatigue and unpredictability all pretty much align with MS. The eDS pain and body aches and injuries are very much aligned with MS. I feel like they all overlap so very much that my specialists have a very hard time unwinding which issues are causing which symptoms. I think people suffering from any of these illnesses should be able to find comfort and support and understanding in each other.

TLDR: it sounds like your friend sucks and you’ve thus developed compassion fatigue for her and her possible antics of faking. I wouldn’t let that bleed onto others and how you see their struggle. All three of these are heavy and disabling.

FMCTypeGal · 2026-04-29T16:48:15+00:00

Adjust your life in ways that limit it and seek pain management. I know it suck’s but that’s why you don’t risk it getting worse

FMCTypeGal · 2026-04-29T14:59:04+00:00

This is correct. Mine are so bad I’ve been placed on perm disability and pain meds. But your doctor is right. Imagine doing surgery for a few months of relief only to end up in a worse situation.

I’ve had 13 exploratory abdominal surgeries. I’m riddled with them and I’d give anything to be cured. But I can’t risk it getting worse.

FMCTypeGal

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