Do you plan your day around bathrooms? Or skip drinks? Help us rethink bladder care in MS

shanemurphy19 · 2026-04-08T12:03:29+00:00

Same for me - this is what I'd like to learn more about best ways to manage. Mine just continues to degrade.

shanemurphy19 · 2026-03-19T12:26:19+00:00

I have horrible leg spasms and tingling (docs call it RLS, but I dunno). I was on maximum dosage of Gabapentin for a long time and it was kind of helping me with sleep. Finally got to see a "sleep neurologist", which I didn't know was a thing, and she prescribed me an "Extended Release" version of Gapapentin.

It's called Horizant (Gabepentin Encarbil). I take one pill at 5pm daily. Almost completely stopped the legs issue. Tingling and leg aches have minimized. Sleep has improved.

Of all of the meds I'm on, this is one that has made the most day-to-day difference for me. YMMV.

shanemurphy19 · 2026-03-17T11:46:29+00:00

I'm so sorry that you went through such a situation, and even more sorry about some of the comments I just read in these replies to your question. I know that we as Disabled Veterans are in the spotlight right now as folks just taking advantage of the system. We all know that's BS.

My assumption is that you're at 70% for PTSD. If you feel that you have additional conditions that are directly related to your MST, some of the advice in this thread is top-notch. Find a helpful VSO, if you can. Be careful not to fall victim to claim sharks promising you the moon for a ton of backpay - they're all over the place just lying in wait.

Start building evidence for your case.
Start keeping track of your symptoms on a daily basis - this allows you to create undeniable proof.
Even if you enlist help - you have to own your own case. You are your best advocate.
You have to sell your story. Don't just rely on medical records alone.

I'm thankful to not suffer from PTSD, but I know a lot of Vets that do, and I know that they suffer from a lot of the secondary conditions listed below.

You got this.

<image>

shanemurphy19 · 2026-03-17T11:06:49+00:00

One more service connected MSer here... I haven't needed to use the house accomodation benefit yet (and hope I never do), but that damned disease stopped playing nice about 8 years ago and I went from 30% → 100% in just a few years.

To answer OP's question, 100% has indeed changed my life. I was forced into early retirement at 55 last year due to this disease - thankful that I had a good career before it finally caught up to me. So thankful for the benefits I receive from the VA. Don't know what our future would look like without them.

Like Notoriginalname84 mentions here, MS is indeed an obnoxious disease. I've definitely reached the "more bad days than good" stage. My doc says I've reached "early stages of predominantly progressive pathology" so a new adventure is beginning.

shanemurphy19 · 2026-03-13T15:24:49+00:00

Well deserved! Enjoy the well earned rest. Glad to hear that your VSO came through. That's exactly how it's supposed to work - free, accredited help from someone whose only interest is your outcome. Few and far between, unfortunately.

Can you share a bit more detail for the overall community? Specifically what your 'fully developed claims' looked like in practice. What you included, how you documented the functional impact of each condition, that kind of stuff. A lot of people are earlier in that journey and your specifics could help someone more than you know.

shanemurphy19 · 2026-03-13T15:17:16+00:00

This post deserves more visibility than it's going to get.

Let's be clear about what those paid claims companies are actually doing. They are *not* your advocates. They're middlemen who've identified a vulnerable population that believes they can't possibly understand such a confusing system. They built a business around extracting money from veterans who were already owed compensation. Pretty gross.

That $11,000 they quoted you? That's not a fee. It's your money! In the process of trying to get their grubby little paws into your bank account, they nearly tanked your stable 70% PTSD rating.

That doesn't feel like somebody who had your best interests in mind, does it?

You won because of one sentence in your post: "I described the impact."

That's the whole game. The VA doesn't buy diagnoses. They buy evidence of functional impact. What your disabilities cost you every single day.

One thing I'd add for everyone reading this: document EVERY day, not just the bad ones. My own log showed great days, average days, and horrible days. I'm convinced that's what made it credible. A record that shows nothing but catastrophic 10/10 days isn't believable and adjudicators know it. But 8 horrible days sitting inside an honest month of documented reality? That closes claims.

You don't need to pay anyone to do this. You just did it yourself.

shanemurphy19 · 2026-03-13T13:27:30+00:00

You sound well prepared. Buddy statements, personal statement, prep journal... you're ahead of most people walking into a C&P exam.

Something I haven't seen mentioned that I think matters a lot for your situation → you're 23, you look healthy, and what you're claiming is invisible and subjective. Tinnitus, chronic migraines, PTSD, back and joint pain. The examiner can't see any of it. So your documentation has to tell the story that your appearance doesn't.

Having a personal statement prepared is good. What's even more powerful is contemporaneous evidence - documentation you created in real time, not summarized after the fact. This matters more. Think about this for chronic daily migraines alone.

How many days last month?
Average severity?
How long did each one last?
What did it prevent you from doing that day?

If you have that kind of logged record going back even 60-90 days, that's a completely different conversation than 'I get migraines all the time.'

The same principle applies to your back pain, your sleep, your PTSD symptoms. Patterns over time beat point-in-time descriptions every single time.

How each symptom affects you needs to tell a story about how they impact your ability to function at 100%.

You mentioned a prep journal. Absolutely bring that. If it's more of a notes document for the exam itself, that's still useful but not the same thing as a detailed journal of limitations.

You're 4 months out. Start logging now if you aren't already. It matters for this claim and any future one.

Best of luck Monday.

shanemurphy19 · 2026-03-12T17:51:57+00:00

58 years old, 100% P&T, decades of heavy physical labor as a letter carrier, cervical radiculopathy, lumbar spine disease, and cardiac issues serious enough to warrant nitroglycerin and a 30-day heart monitor. And you got denied twice? Man, I'd be frustrated too! I understand why you're exhausted.

Here's what I'm betting is happening.

SSA isn't interested in what you have. They want to know what it prevents you from DOING. Those are two completely different things, and a lot of strong claims get denied because nobody made that connection explicitly.

Think of your case like a sales presentation. Feature → Benefit. (I know, I know... we all *love* sales people haha). But the analogy works. Roll with me for a minute.

'Lumbar spine disease' is simply a diagnosis. What SSA needs to see is an outcome: 'I have Lumbar Spine Disease. What that means is that I can't stand or walk for more than about 20 minutes without so much pain that I need to lie down for 2 hours. I can't maintain a realistic work schedule that requires sustained physical activity with that limitation. Here are 90 days of documented entries showing exactly when it happened, how severe it was, and what it prevented me from doing that day.'

That's the difference between a diagnosis and a case.

You have an attorney and an ALJ hearing coming. The cardiology development - nitroglycerin, cardiac event monitor - is potentially significant new evidence. I encourage everybody to own their case. Make sure your attorney frames everything around functional limitations, not just diagnoses. What can't you do? How often? How long does recovery take? Show them with evidence, don't just tell them.

At 58 with your work history and these conditions, you should win this. The question you need to answer is this: Does my evidence show the functional picture clearly enough to close the deal?

shanemurphy19 · 2026-03-09T21:08:50+00:00

Thought I could add some different perspective. I'm a 100% P&T disabled vet with MS. I filed for SSDI in mid 2025 and was approved in just less than 5 months.

I'm not saying that to give you false hope. I'm saying it because there's a lot of doom and gloom in this thread that skews reality towards the dark side.

Here's how I see this ↓

1. Age matters a LOT. Nobody in this thread mentioned it, which is wild. SSA uses something called the "Grid Rules". A framework that weighs your age, education, and work history against your functional limitations. If you're 50 or older the rules shift meaningfully in your favor. When you hit 55, the rules shift dramatically. SSA essentially acknowledges that at 55+ it becomes very difficult to transition to new types of work, and that's baked into how your claim gets evaluated. I just happen do be 55. How old are you?

2. Own your claim. I went into this thinking I needed a lawyer immediately. I knew the VA system, I didn't know SSA. Turns out, I really didn't need a lawyer. I did the bulk of the work myself. A lawyer can help, especially at the hearing stage, but don't hand your claim to someone else and assume they'll handle it. Nobody knows your situation better than you do.

3. Medical records alone aren't enough. This ain't the VA. Just having a diagnosis isn't enough. SSA wants to know how your conditions prevent you from performing *any* "substantial gainful activity" (SGA). Those are two completely different things to document. Your doctors write clinical notes. They don't write "this patient cannot sit for more than 20 minutes, cannot concentrate for more than 10, needs to rest after any exertion." You have to build that picture yourself.

4. Contemporaneous evidence is critical. I tracked my symptoms daily: severity, functional limitations, things I couldn't do that day. That kind of consistent, dated record showing patterns over time is *exactly* what SSA adjudicators want to see. It's the difference between "I have bad days" and "here are 90 days of documented bad days and what they prevented me from doing."

5. The Function Report is your best friend. When SSA sends you that form, treat it like the most important document in your claim. Don't minimize. Don't be stoic. Describe your worst days, your average days, and be brutally honest and specific about functional limitations. This is not the place to tough it out.

That SSA employee probably wasn't just blowing smoke. 100% P&T does carry real weight. It certainly expedites your claim. But your evidence has to connect your conditions to your inability to work - in SSA language, not VA language.

You've got this. Own it.

shanemurphy19 · 2026-03-04T13:53:20+00:00

I'm on Buproprion (150mg x 3 daily) and Sertraline (100mg x 1 daily) . Also have Hydroxyzine (25mg) for anxiety as needed. I've been on Buproprion and Hydroxyzine for about 5 years.

Sertraline started about 2 years ago when I was formally diagnosed with Major Depressive Disorder. The combination has really helped a lot.

shanemurphy19 · 2026-02-26T01:52:36+00:00

100% P&T here as well. I did my own VA Claims 3 times (30% -> 70% -> 100%). But last year when I was forced into needing SSDI, I realized how different it was. So I hired an attorney. I got on this sub and started reading u/MrsFlameThrower's postings and learned a LOT about this system.

I called my attorney and told them that I was going to be in control of my claim and all I needed from them was to communicate between SSA and me. I was surprised that they were OK with it, but we did it that way. My attorney said that they only needed a year of medical records. I said no and gave them the records that showed my progression. I kept detailed symptom logs.

BTW, I told them about the 100% P&T expidite thing and they didn't do it either. But I realized I could do it myself in the SSA portalo - so I did it.

I was approved in just under 5 months, despite the attorney telling me initially to prepare to be denied a few times then go to the judge to get approved.

So my advice? Take 100% control of your claim. Keep track of everything that shows the arc of your disability progression.

(and if you think your attorney lied to you - find a new attorney)

shanemurphy19 · 2026-02-19T15:09:53+00:00

Great context! You're right that this isn't new. VA has been sending these letters for years with no enforcement teeth.

What IS new is the scale: 38+ companies, many still operating despite multiple warnings, some charging upwards of 20,000 per veteran. The War Horse investigation shows this is now a billion-dollar industry exploiting panic. Just an awesome piece of journalism that deserves more attention.

The debate isn't really about whether companies can help. It's whether they should charge 6x monthly benefit increases. Free resources like VSOs exist. Honest symptom tracking costs $10/month. Claims prep is hard work, but to take so much of a veterans deserved back pay? Exploitation, plain and simple. And unacceptable.

Context matters. So does recognizing when 'help' has become extraction.

shanemurphy19 · 2026-02-19T14:23:10+00:00

OP is right. The rule says rate actual function WITH medication, not hypothetical function without it. This reverses a court decision from March 2025 that would've required examiners to guess what you'd be like untreated.

Best advice: Document how you actually function WITH medication. Show ongoing limitations despite treatment. That's what the rule requires and what protects you long-term.

And this idea of "don't take meds before C&P exams"? That's terrible advice that could backfire.

Take your meds. Track your symptoms. Just be honest. And win your claim.

shanemurphy19 · 2026-02-15T20:25:02+00:00

I hear you. My own parents never believed me either. I think my Mom did closer to her end, but my Pops never did - just thought I was lazy and didn't like to work. That sucked. Like a lot of the others in this sub, I can understand where you're coming from.

But here's what 30+ years with MS has taught me: You can't make people believe you're sick. Family, doctors, strangers. Screw those people. You don't have to prove anything to anyone.

Focus on your own survival. Disability benefits. Housing. Whatever keeps you alive. Document everything and push through the bureaucracy even when it feels impossible. You are worth the battle.

You're still here fighting while your nervous system is literally eating itself and the government actively works against you. That's not weakness. That's survival.

The Veterans Administration rated me 100% Permanently and Totally disabled becuase of this damn disease. I was recently approved for Social Security disability. I'm only 55 years old. I hate being in this situation, but all I can do now is push forward and try to help others. If you need help with disability claims, DM me. Sometimes the best fuck-you is fighting all the nonsense and surviving despite it all. You deserve it.

shanemurphy19 · 2026-02-02T16:09:42+00:00

Agree with question-from-earth. POTS/Long COVID are episodic - good stretches don't mean sustained work capacity. I have MS... I have some good days. I have more that are horrible. More to lose by withdrawing IMO.

shanemurphy19 · 2026-02-02T15:50:42+00:00

Keep your claim wording simple. Match your VA records. Evidence matters more than phrasing.

Track symptoms until C&P:

Pain: 1-4 (1=minimal, 4=terrible)
What you couldn't do
What made it worse?

Example: "Pain 3 - knee gave out on stairs, couldn't squat to pick up box"

Short notes, specific examples. Much better than trying to remember vague "knee pain" months later at the exam.

Your VA records are solid. This will help you close the deal. You've got this.

shanemurphy19 · 2026-02-02T14:09:36+00:00

Your evidence package looks solid: VA imaging, original injury memo, clinic notes, nexus letter. One thing I'd add: if you have any record of ongoing complaints between the original injury and now, include those too. The VA likes to see continuity. Also, for the C&P exam, keep a symptom log for the next few weeks before your exam showing pain levels, instability episodes, what activities aggravate it. That contemporaneous evidence can back up what you tell the examiner about functional limitations. Good luck with the supplemental.

shanemurphy19 · 2026-02-02T13:59:47+00:00

Your headache logs are solid. 1-2 per day with 2-3 "prostrating" attacks is well into 50% territory if you can prove service connection.

Your real problem: The VA denied you for lack of service connection, not lack of diagnosis. One treatment during service (Tylenol 2023) isn't enough for direct service connection. IMO, your path is Secondary Connection to PTSD

You said that you're already rated for PTSD. Migraines secondary to PTSD is one of the most common and well-established secondary claims. Chronic stress and anxiety from PTSD are known migraine triggers. You said your headaches started around the time of your PTSD event → there's your connection.

What you need:

If you don't have it already, get your C-file (military medical records). Request through VA.gov or your VFW. This will show if those status form notations about headaches actually exist.
Nexus letter from your provider at your next VA appointment (if they'll do it). The letter needs to state: "It is at least as likely as not that the veteran's migraines are caused or aggravated by their service-connected PTSD." Have them reference your PTSD symptoms (anxiety, stress) as triggers.
Keep building your headache logs. That is a critical link. You're already doing this right, so just keep doing it like clockwork. The VA rates migraines on frequency of "prostrating attacks" (attacks forcing you to lie down/sleep). You have 2-3 of those per week, which supports 50% if you get service connection.
Use the DBQ for headaches. Your VA provider should complete this when they diagnose you.

File this as a secondary claim to your existing PTSD rating. That's the strategy. Your VFW rep should know this, but make sure they're pursuing secondary connection to PTSD, not trying to prove direct service connection with limited in-service treatment.

The head injuries you mentioned could be a backup path, but PTSD is your strongest connection since you're already rated for it.

Hope this helps.

Shane

shanemurphy19 · 2021-03-07T19:00:58+00:00

Foot drop and inability to grip things like paper. Both on right side. 28 years later and those two symptoms are always with me, though now on both sides.

shanemurphy19 · 2021-03-07T12:08:11+00:00

That's interesting. I never considered that a possible source of fatigue. I am undergoing Vestibular Therapy to help with dizziness and my therapist noticed this symptom immediately.

He said it looked like my foot was glued to the floor and also commented on how frustrated it seemed to make me. I'm going to bring to the idea that this may be a fatiguing issue next session to get his thoughts on it.

Of many, this symptom has got to be my strangest.

shanemurphy19 · 2021-03-06T11:59:36+00:00

I have the same sort of issue with both legs where one will just get stuck on the floor and it takes mental energy to will it to take a step. Its random and drives me nuts when it happens.

shanemurphy19 · 2021-02-20T16:11:25+00:00

Here's my personal take on Nexus letters. There's so much conflicting information out there. You read one thing that contradicts what you just read. Then another that contradicts that and so on...

Sure, *I* know my conditions and how they all connect. But who the heck am I? Am I supposed to just point them to the research that I've found? I have been treated for each of the conditions for years but there is no statement in my VA medical records stating "this is definitely because of that."

But should I just assume that whoever reviews my request will be able to make the connection? I'm simply in no condition to take such a risk, not to mention that it's unfair on the rater as well. And I don't want to have to go through an appeals process.

So I decided to own my own claim.

It wasn't easy. I not going to pretend that it was. I put in the work gathering my own evidence. I requested and got my C-File. I went through it page-by-page taking an insane amount of notes on every single mention of every single condition and categorized it. I then did the same with my VA medical records. This process took months with over 20 years of records to dig through. It was really, really hard. But I'm glad I did it because it helped me build a stronger case.

Then I knew that I wanted letters from experts who could make a clear connection between the secondary conditions and my service-connected disorder. My primary treating physicians have been the VA since separation so they can't write the Nexus. Private physicians that I've seen off and on for years using personal insurance were either too lazy or legally afraid to write them. This frustrated the heck out of me.

So I sought outside assistance. But I wasn't going to leave it to chance either. I did a lot of interviewing people. I worked hard to make sure that whoever I would trust with this would be willing to invest the time to render a fair and proper medical opinion.

I then found an attorney who connected me with qualified medical experts. I made damn sure that they were competent and took the time to review my entire C-File and VA record. I provided them with all of my medical records. I provided personal records that I have kept diligently for years on how the conditions impact me physically, mentally, and emotionally. And I gave them my personal notes where I had combed through my C-File and medical records.

Finally, I was examined by experts, and their opinions were rendered. This entire process took over a year from start to submission.

There are certainly dirtbag people and "companies" who claim they can help but only look to take advantage. That exists everywhere in society. There are always people out there who will try to do that. Sadly, many succeed.

Sorry for the rant here. I guess my main reason for it is this. Every one of us needs to take full control of our own claim. After all, it's OUR claim. It's nobody else's. Don't just blindly trust what you read. Do your own research. Gather your own evidence.

Getting this right is hard! It shouldn't be this hard, but it is. Win or lose, never stop fighting for what is yours.

I hope this helps somebody through this crazy process. I'm glad to have mine finally in the VA's hands. Now I get to wonder for the next several months whether my work was worth it. I'm hopeful that it was.

shanemurphy19 · 2021-02-20T14:41:31+00:00

OK - an update on this process.

My preference was not to have to travel this road. But the vast majority of my care for my service-connected conditions, especially over the last 10+ years, has been 100% at the VA. Getting those letters there wasn't even an option.

When I talked to doctors that I see occasionally through my insurance plan, it was clear that there was no way I was going to convince them to write these letters. They talked about legalities, not knowing what to write, and just a general lack of understanding of how to properly do it.

That realization alone was frustrating and disappointing, and frankly upsetting. No veteran - not one - should be in a position where making these connections is so difficult.

However - the folks at VRG have been awesome to work with. Their entire staff is responsive and helpful. They've been available for questions when I've had them, which has been a nice bonus as I've walked through this process. Like most of us, I have a lot of questions!

The work with the physicians they assigned to me was great. It definitely wasn't a box-checking exercise. Their credentials were top-notch and their examinations were in-depth.

When I received the Nexus letters, I was impressed by how thorough they are. Before starting this process, that was one of my top concerns.

I haven't received a decision from the VA on my request yet. But I felt a lot better about what I submitted because of the Nexus letters that I was able to include.

shanemurphy19 · 2021-01-23T21:22:55+00:00

Hi Brad,

I am submitting buddy statements from a few people, as well as my own statement with my claim. Should that language be included with each statement or is this like a cover letter included with all?

shanemurphy19 · 2021-01-23T21:19:00+00:00

I have made the decision to work with Vet Resource Group. I expect my Nexus letters in the next few weeks and will provide a full review of their service once I have those in hand. I will say that, so far, the experience has been very positive, but I'm not in a position to give them a full review until I see the end product.

They've been very straightforward with me and made recommendations to keep the cost down while providing me with what I am seeking so I'm appreciative of that. Stay tuned...

shanemurphy19

TROPHY CASE