Answers, just not ones I wanted.

[Archives1]

Back at PT again today. We did the balloon expulsion test again but this time changed where the balloon was internally and how much air was in it. Again, I could not feel any of it. Last post about PT I mentioned that PT looked at my anal manometry test results. Well, she did again this week and found that the amount of air used in that test was near the max. So, now my PT is really going to push to repeat that test because what we know from today is that I have no sensation that anything is there even with 120cc of air (we did 60cc last time or about the size of a cutie orange or just bigger than a ping pong ball. Well today was just under the size of a softball and no feeling of it)

She mentioned to me about using a tens unit to simulate the muscles working but does not know if it would work for me. PT is very worried now that nerve damage is the cause. So, here is the thing.

I have wadded myself up a lot in my life. Too many concussions to count and many times where I lost memory.

The one thing that my mom is looking into is the timeline of when things changed within my life. She is fearful that I have MS. It runs in my family a lot. I am not convinced to even bring it up to doctors just yet but it does make some sense. I have a long timeline of crap. My mom is putting together what I don't know, and I am being honest with things I have never said. So, after seeing my next doctor and getting everything together I am going to bring it up.

Before anyone says don't use google to diagnose myself, that is not what is going on. My mom is in touch with several family members that have MS and is just trying to see if it adds up. One thing that my mom said is that there was a huge shift in everything about me years ago. Went from being fearless to so clumsy I needed a bubble wrap suit. I go through fazes where my passion for some things is so deep it is all I talk about to not being interested in anything. Looking at the most common symptoms of MS, I have all of them and have for years. So, it may be nothing but at this point with everything we have looked into and seeing that doctors are trying to rule out things kind of points to where this may be going.

I truly hope it's not that but it would make a lot of sense.

 

[Archives1]

My sister has ms. Hers started by her vision being affected. She can’t even read a computer screen now. Hopefully you don’t have it.

 

[Archives1]

so sorry to hear all of this. no fun, prayers and keep faith, I tell myself a lot-be anxious for nothing. Remember this is all temporary, it is not eternal.

 

[Archives1]

Im glad your mom is making a historic timeline
I hope she uses the doctors exams from what she can and keeps it simple line by line
It is certainly possible you have other conditions that are unrelated or inter related to your health but for right now you are saying your PT has determined you have no nerve sensation in the area when an ansl manometry test is done.

 

[Archives1]

MS has different ways of manifesting itself for different people. I have the impression it isn't a disease where everyone has exactly the same symptoms. Best way to determine is to ask your doctor, and if he thinks your suspicions have merit, he'll order the appropriate tests. That will help pinpoint a diagnosis.

 

[Archives1]

The glass is half-full here. Once your condition is diagnosed they can put together a treatment plan. You are lucky to have your mom leading the charge here. Good luck with this.

 

[Archives1]

MS is not hereditary.

Perhaps you should try some psychiatric therapy. You can do it via zoom. The term “anal retentive” has that name for a reason. You may be subconsciously affecting your bowels with your underlying feelings. Since they haven’t found anything actually wrong with you physically, it may be time to figure out what’s going on in your head.

 

[Archives1]

Sending all the prayers my friend. Hope your next appointments can give you information and answers!

 

[Archives1]

On June 9th when I last saw my GI she prescribed me Amitiza. The goal was to replace my Miralax, Bentyl, and Cloace with that one medication. That medication was never approved by my Medicaid insurance. Then on June 14th, my GI doctor prescribed me Linzess and I still had to wait for Medicaid to approve it. That took tell July 1st. After getting some clarification from GI I started taking it on 7/3 and started backing off the other medication. By 7/5 I was starting to have issues. Yesterday I ended up calling the GI office because none of my messages were replied to by my GI doctor. I ended up talking to the person filling in for my GI and I have switched back to all my other medications. That doctor was also one of the heads of GI so decided to look over my whole case and do a full history over the phone. He is ordering more tests because some of the things going on with my need to be looked into.
He posed a few big questions that have never been asked/answered and from my history was very upset that they had never been asked over the year plus I have been going to the hospital for this. I brought up some of the things that Physical therapy found, and I am now going to have some more tests done.

I am getting two MRIs done, One of my brain and one of my spine. He also mentioned a test that can be done by my Colorectal doctor on the 19th so he sent that doctor a note/referral as well.

This was a very good thing. I have posted most of my full history here but a lot of that has never been considered by my team of doctors.
This GI also said something. That the fact that there was a back and forth between Medicaid insurance and GI was all over that fact that I was not listed as having irritable bowel syndrome with unexplained constipation (IBS-C) or post-surgical Irritable Bowel Disease with unexplained constipation (IBD-C). The issue with him was that there is no way to say that I do not have IBS/IBD because of the surgery that I had. I will always have constipation issues because of that surgery.

So, I have been diagnosed with Dyssynergic defecation with type II rectal hypersensitivity, Overflow/stress/urge urinary incontinence with secondary enuresis, Bowel incontinence, Colonic diverticulosis with a history of acute diverticulitis with colonic abscesses and perforation, IBS-C/IBD-C with limited control with medication, and stomach, bowel, and bladder spasms with limited control with medication.

Now, here is the other thing and why my mother feels the way she does about the possibility of me having MS. I also have Dysgraphia, Dyslexia both are attributed to neurological disorders or of neurological origins.
Without saying anything that GI doctor asked me if I had ever been diagnosed with MS or any other neurological disorders so. He felt with the number of concussions including the big one at 15 that I have had over my lifetime that there is a good possibility there is a neurological component to what is going on with me and now I am going to get tested to see.

Here is the thing. Occam’s razor always tells a doctor that a singular diagnosis should always fit what the patent is going through. In my case that does not work yet.

 

[Archives1]

prayers, at least the MRI's will give more info, maybe need to switch doctors. This guy seems more in tune to your situation. Good Luck.

 

[Archives1]

prayers, at least the MRI's will give more info, maybe need to switch doctors. This guy seems more in tune to your situation. Good Luck.

I'm getting his information in the morning because I have to call anyway to get scheduled for the MRI just the order is in at this point, but yeah. First doctor to ever really to hear me and have his own question about my history.

 

[Archives1]

Here is wishing you a lot of luck and that the 2 MRIs will lead to some definite answers for you. Also I think this latest GI doctor will be a good one to stay with because it seems he is delving more deeply into your overall medical history. Everyone is pulling for you to get you through this thing, with all best wishes!

 

[Archives1]

@ThatFLGuy

Given that nothing has yet been found to be wrong with you physically, despite the many, many, many physical tests you’ve had done over the course of the past 18 months, when are you going to finally go in for emotional therapy? Sure seems like you were abused, or perverted, at a young age. If something was truly wrong with you physically, you’d already know it, and you’d have reported those test results to us by now. But nope, there’s nothing actually physically wrong with you. Can we say, “hypochondriac?” You repeatedly insult those of us who truly have provable nerve damage and conditions, and we’re sick of it.

How have you never noticed how you’re literally the only person who talks about their own shit on this website? - for the past 28 months?!!!!!!!! When are you *finally* going to admit to yourself that the rest of us don’t need to hear about your (literal) crap? There must be somewhere else for you to talk about that. This is primarily a urinary incontinence website. There do exist fecal incontinence websites elsewhere, and that’s where you belong, not here. You’re the only person here who constantly talks about your own poo and medical appointments, as if we’re all dying to hear about your crap, about your updates and appointments. News flash: WE DON’T. I don’t enjoy hearing about your every BM. Wayyyyyy TMI, way too frequently. It’s gross. Even your own PT and GI don’t know what’s wrong with you, because there actually isn’t anything wrong with you - It’s all in your head. You’re an attention-seeking liar. They don’t even bother testing you any more, because you’re a phony fraud.

Nobody else tells you how they feel about your incessant, greedy posts, because you scare them. But they tell me, and they tell one another: you’re gross. Come back and talk to us sometime when you’re actually capable of dealing with what you’re actually going through, when it’s finally something other than being just a hypochondriac.

Also, you claim to have a masters degree, yet nobody I know going back to junior high school, is as incapable of forming adequate sentence structures, as you are. Nobody should ever end a sentence with “so.” Yet that’s your standard go-to. You couldn’t even have graduated with a bachelors with that inadequate of a vocabulary, but you continue to insist you have a masters?!?! Some of us do, and you’re such an obvious imposter.

Everyone on here told you not to go back to FL during COVID’s worst times there, yet there you went, and now you fake that you’re a longhauler like SciFiFan and I actually are?!!!!!! You’re such a fraud phony, it’s so gross. We don’t feel like that about anyone else on this forum, as we do about you. You’re a major narcissist, going around thinking we have nothing to worry about but you.

 

[Archives1]

@ThatFLGuy Please quit acting like a 13-year-old.

 

[Archives1]

@ThatFLGuy Also, a doctor only recommends, doesn’t “prescribe,” an OTC medication like Colase. You faked your liver “disease” because you took too much Tylenol, and now you want our sympathy because you to take an inadequate OTC stool softener like Colase, all while continuing to act like you’ve tried everything, even though you’ve still never tried anything serious like Dulcolax?

 

[Archives1]

Ive complained about my bowel issues before on here and this post makes me wonder if I shouldn’t have. It’s gross and I hate it but it’s part of my incontinence. Sorry if I’ve posted things that are tmi before.

 

[Archives1]

I know what you mean, EJ. In ordinary conversation, under ordinary circumstances, it would be TMI for sure. But it's true, it is a part of incontinence and no one of us can consider ourselves immune from those issues at some time or another. We can talk frankly among ourselves about these issues. That's what a forum like this is for. After all, it is embarrassing to talk to a doctor about it, especially if the doctor is fully continent. But here, we can "let our hair down" a bit, as it were. After all, any one of us may just have the answer we're looking for!!! Somehow it's less embarrassing coming from someone who knows exactly (or very closely) what we're going through.

 

[Archives1]

Very well said Bill
Where else can anyone suffering these extraordinary conditions express themselves
If one is on this forum one can chose whose posts to read and if it is TMI or one can't give encouragement, simply don't read that persons posts.
Glad you got to speak with a really good professional FlGuy!

Sending best wishes for strength and hope for a serene healthier future to all who are here.

 

[Archives1]

Hi, I agree-we need people to talk about this stuff what we go thought the same stuff at times. IF it brothers some-don't read it. This is a blessings - this group we have. I also belong to the meningoima brain tumor forum and share lots of info. It is not only here-a lot of doctor's don't want to listen to their patients. A nurse who knew she has a brain tumor, the doctor's are her hospital did not believe here. Guess what? She had a nasty one. The surgeon told her that he didn't believe her that all the symptoms were from the tumor, guess what after surgery-he found two nerves which were tangled in the the tumor and believe her now that the tumor was causing all these symptoms. I don't know why people don't keep an open mind. Who are we to judge-no one-we are not to judge-this is not our job. Our job is to share information while showing as much kindness as we passible can. My knee hurts so bad today after I am not sure what I did. I am guessing I twisted after cleaning up the yard after the hurricane Elsa, actually it was a tropical storm where it hit us. I dismissed my home therapy by workmen's comp on my knee so the medicare home health therapy would come into my home for my shoulder therapy-guess what-they still didn't come. They didn't contact me that they weren't coming either. The surgeon I had is very good in his job but his staff stints. He is my regular orthopedics partner who specialized in shoulder surgery. Since is so a tricky surgery and more was involved than just my rotator cuff-bicep was a stag IV something, my orthopedic recommended I go through him. He is a good surgeon but his staff does not follow through at all. I asked his one PA 3 weeks-no maybe 4 weeks to fill out my the forms for transportation that the county provides for medical care and older people who cannot drive in their home. I ask her to fill out the forms and give them back to me. She said no problem-I will fill these out and fax them in for you, now there is a at least a 3 week turnaround time. She lost them and I never heard from her again. I had to call the agency again which is not their job after surgery where I cannot drive and in pain at home to fax the forms to them and have them filled out. So they did fax them back but not completed. So I had to call again to ask her to faxed them again where I left a message to the PA, who took off my bandage 2 weeks after surgery. The medicare nurse never came back in to close out my surgery. Because workmen comp was coming in for the left knee. I had to tell them so that they would not collide at the same time. This really has pissed me off to no extent. This is the new medicine people. Medicine is such a big business today, it is very disappointing. I don't think many doctor's care anymore-I really don't. I have to say that Lee Health has been good to me. I went in because I was real dizzy and not feeling well. A different doctor in the group took me, he was busy but squeezed me in. He though I might have a urinary tract infection but wasn't sure, he personally called me friday to tell after looking it over I might have one. So he called an antibiotic for me where at our Publix in Florida they are at no charge. I took them yesterday and today and I feel better except for my knee. So we will see, I sent him a thank you note today in My Chart which is health care system where we can communicate without different providers in our healht care system. I was very happy about it. So it goes to show you, not all doctor's are assholes. Some do care, he is young ,starting out so he probably isn't burned out yet. I would imagine there are some difficult patients.

 

[Archives1]

@ThatFLGuy, I hope this is going to get you the answers you need. Thanks for the update!