Abrupt Accidents

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OmiOMy

OmiOMy

A padded elfin enby
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All right. I'll do my best to explain this with what information I have.

I have fibromyalgia and idiopathic peripheral neuropathy — meaning yes, the neuropathy is there, but we have no idea why or what is causing it. I'm negative for diabetes. I've been on a treatment plan for it since 2012 (currently gabapentin at 600mg/3×day), but it's progressed to the point that my legs' nerve function measure only 80%. I've been told to report any strange symptoms to my doctor.

Well, around a year ago, I started having incidents of zero feeling around my bladder, which was bad enough without the bladder spasms that I'd been having already (semi-handled with benztropine). They usually came around after a trip to the bathroom, so if meant the damage was minor, but recently it happened on a fuller bladder, and I lost the "hold" in all my muscles there — meaning I soaked myself and the floor. I already have to schedule bathroom trips every hour to avoid accidents, so this came as a shock.

I've already attempted to tell my doctor about these, but it didn't seem to ping his radar. How should I go about trying to get him to listen? Should I? (I haven't even told him about the bed-wetting, let alone this.)
 
OmiOMy said:
All right. I'll do my best to explain this with what information I have.

I have fibromyalgia and idiopathic peripheral neuropathy — meaning yes, the neuropathy is there, but we have no idea why or what is causing it. I'm negative for diabetes. I've been on a treatment plan for it since 2012 (currently gabapentin at 600mg/3×day), but it's progressed to the point that my legs' nerve function measure only 80%. I've been told to report any strange symptoms to my doctor.

Well, around a year ago, I started having incidents of zero feeling around my bladder, which was bad enough without the bladder spasms that I'd been having already (semi-handled with benztropine). They usually came around after a trip to the bathroom, so if meant the damage was minor, but recently it happened on a fuller bladder, and I lost the "hold" in all my muscles there — meaning I soaked myself and the floor. I already have to schedule bathroom trips every hour to avoid accidents, so this came as a shock.

I've already attempted to tell my doctor about these, but it didn't seem to ping his radar. How should I go about trying to get him to listen? Should I? (I haven't even told him about the bed-wetting, let alone this.)
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If this is bothering you then yes you should have a frank and honest discussion with your Doctor.
 
Agreed you should talk to your doctor and tell him everything thats going on(keep a log) also ask to see an urologist
 
Maybe see another doctor, if possible?
 
Scaramouche said:
Maybe see another doctor, if possible?
Click to expand...

That's going to be tricky. I'm on Medicaid and have been trying to get a new doctor for a year now. This one hasn't even been taking my bilateral chronic patellar subluxation seriously and I kinda need my knees for my job… I think I'll see if I can get my gyn to go over his head again like I did when I dealt with cysts earlier this year.

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ST50 said:
If this is bothering you then yes you should have a frank and honest discussion with your Doctor.
Click to expand...

The trick is getting him to listen for more than a few minutes at a time. He likes to be in and out in five minutes. I'm gonna have to strong-arm him, figuratively speaking.

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Rob110 said:
Agreed you should talk to your doctor and tell him everything thats going on(keep a log) also ask to see an urologist
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He may send me to a urologist anyway — I'm ridiculously UTI-prone, which I know is not helping things.
 
Not getting anywhere change doctors - get a second opinion !

I presume that you are wearing protection (diapers) to keep your accidents controlled.
But unless you are resigning yourself to a permanent life in diapers then you are going
to have to take action with your doctor and those medical professionals that he refers
you to correct or mitigate the symptoms you are having.
I don't think that your condition is going to cure itself on its own and medication and
more diapers is going to be drain on your financial situation.
You certainly need help - good luck finding a solution and recovery - BUT DON"T WAIT !
 
babylock1 said:
Not getting anywhere change doctors - get a second opinion !I presume that you are wearing protection (diapers) to keep your accidents controlled.But unless you are resigning yourself to a permanent life in diapers then you are goingto have to take action with your doctor and those medical professionals that he refersyou to correct or mitigate the symptoms you are having.I don't think that your condition is going to cure itself on its own and medication andmore diapers is going to be drain on your financial situation.You certainly need help - good luck finding a solution and recovery - BUT DON"T WAIT !
Click to expand...
I'm due to see my doctor pretty soon to get a medication adjusted, so I'll be able to tell him about this soon. The good news is I wear cloths and have a good stash built up, so I don't have a risk of running out of protection and having a disaster I'm wearing protection when I can get away with it and running on the dehydrated side when I can't (at work), but I know this is risky for its own reasons and I'm going to have to stop using this "solution" because it's hard on the kidneys by itself, let alone with all the meds I'm on (there are eight).
 
OmiOMy said:
All right. I'll do my best to explain this with what information I have.

I have fibromyalgia and idiopathic peripheral neuropathy — meaning yes, the neuropathy is there, but we have no idea why or what is causing it. I'm negative for diabetes. I've been on a treatment plan for it since 2012 (currently gabapentin at 600mg/3×day), but it's progressed to the point that my legs' nerve function measure only 80%. I've been told to report any strange symptoms to my doctor.

Well, around a year ago, I started having incidents of zero feeling around my bladder, which was bad enough without the bladder spasms that I'd been having already (semi-handled with benztropine). They usually came around after a trip to the bathroom, so if meant the damage was minor, but recently it happened on a fuller bladder, and I lost the "hold" in all my muscles there — meaning I soaked myself and the floor. I already have to schedule bathroom trips every hour to avoid accidents, so this came as a shock.

I've already attempted to tell my doctor about these, but it didn't seem to ping his radar. How should I go about trying to get him to listen? Should I? (I haven't even told him about the bed-wetting, let alone this.)
Click to expand...
Well there's good news and bad news , good news your sorting it out bad news Gabapentin and a million other drugs cause IC,and allow over and encourage over time improper emptying and overflow IC , have they worked you up Guillan Barre and CIDP yet , brain scans ,MRI'S,lumbar punctures are your friend and of course the occasional needle biopsy, welcome to the the greatest show on earth the neurological "medical mystery tour" , your greatest friend when walking this road is a sense of humour and not taking it personally, no matter how dark and stormy the consults or test results or guesstimate diagnosis , always keep perspective and don't fret until you have completely exhausted the best Neuro's in the country , I have been where you are ( you might have guessed?) Take a trusted friend just 1 of them and keep them in the loop ,vent to them or here but dont drag your whole family and crew on the your tour because the ups and downs can wear you out let alone family (I don't mean lie or cut them off but don't tell them every doctors think aloud moments ) if I can help you feel free to PM or post me , I don't know everything but I know a lot neuromuscular and neurological disorder testing and such is one of my specialties ! Take things one day at a time or sometimes one diaper at at a time ,to get you thru .

Sent from my SM-T810 using Tapatalk
 
OmiOMy said:
I'm due to see my doctor pretty soon to get a medication adjusted, so I'll be able to tell him about this soon. The good news is I wear cloths and have a good stash built up, so I don't have a risk of running out of protection and having a disaster I'm wearing protection when I can get away with it and running on the dehydrated side when I can't (at work), but I know this is risky for its own reasons and I'm going to have to stop using this "solution" because it's hard on the kidneys by itself, let alone with all the meds I'm on (there are eight).
Click to expand...
Eight pills , my god your a light weight , I take like 23 just at bedtime and then take a handfull mornings and throughout the day , my blood is a pharmacy all by itself!

Sent from my SM-T810 using Tapatalk
 
Tetra said:
Well there's good news and bad news , good news your sorting it out bad news Gabapentin and a million other drugs cause IC,and allow over and encourage over time improper emptying and overflow IC , have they worked you up Guillan Barre and CIDP yet , brain scans ,MRI'S,lumbar punctures are your friend and of course the occasional needle biopsy, welcome to the the greatest show on earth the neurological "medical mystery tour" , your greatest friend when walking this road is a sense of humour and not taking it personally, no matter how dark and stormy the consults or test results or guesstimate diagnosis , always keep perspective and don't fret until you have completely exhausted the best Neuro's in the country , I have been where you are ( you might have guessed?) Take a trusted friend just 1 of them and keep them in the loop ,vent to them or here but dont drag your whole family and crew on the your tour because the ups and downs can wear you out let alone family (I don't mean lie or cut them off but don't tell them every doctors think aloud moments ) if I can help you feel free to PM or post me , I don't know everything but I know a lot neuromuscular and neurological disorder testing and such is one of my specialties ! Take things one day at a time or sometimes one diaper at at a time ,to get you thru .

Sent from my SM-T810 using Tapatalk
Click to expand...

It used to be nine pills — they yanked one because they thought I would have interactions even though I hadn't had any for the year I'd been on the combination.

They haven't looked for Guillam Barre and CIDP yet, but my MRIs have come back normal. There was one scan at a neurologist's office that I don't know the name of that lit up like a Christmas tree when we were looking for a fix for my cluster headaches.

I hadn't thought of so many of my meds being a factor. I mean, it's supposedly uncommon, but so was the BLISTERIMG RASH reaction from the Relpax we tried for my headaches, and that happened :smile1:
 
OmiOMy said:
All right. I'll do my best to explain this with what information I have.

I have fibromyalgia and idiopathic peripheral neuropathy — meaning yes, the neuropathy is there, but we have no idea why or what is causing it. I'm negative for diabetes. I've been on a treatment plan for it since 2012 (currently gabapentin at 600mg/3×day), but it's progressed to the point that my legs' nerve function measure only 80%. I've been told to report any strange symptoms to my doctor.

Well, around a year ago, I started having incidents of zero feeling around my bladder, which was bad enough without the bladder spasms that I'd been having already (semi-handled with benztropine). They usually came around after a trip to the bathroom, so if meant the damage was minor, but recently it happened on a fuller bladder, and I lost the "hold" in all my muscles there — meaning I soaked myself and the floor. I already have to schedule bathroom trips every hour to avoid accidents, so this came as a shock.

I've already attempted to tell my doctor about these, but it didn't seem to ping his radar. How should I go about trying to get him to listen? Should I? (I haven't even told him about the bed-wetting, let alone this.)
Click to expand...

OmiOMY: Im responding mainly to your last sentence. Do you see a neuro specialist or just a GP at this point? I have serious neuro issues causing mobility and eyesight and other problems and have seen many neuro docs. Their pretty much all aware of the bladder issues associated with neuro problems. My main specialist quizzes me about this all the time. At first I found it embarrassing when he raised it but its just a medical problem and should be addressed like that. Even if it isnt on your doctors radar if you talk to him about it and if he looks it up he will figure out its not that unusual. Good luck.
 
mikesecret said:
OmiOMY: Im responding mainly to your last sentence. Do you see a neuro specialist or just a GP at this point? I have serious neuro issues causing mobility and eyesight and other problems and have seen many neuro docs. Their pretty much all aware of the bladder issues associated with neuro problems. My main specialist quizzes me about this all the time. At first I found it embarrassing when he raised it but its just a medical problem and should be addressed like that. Even if it isnt on your doctors radar if you talk to him about it and if he looks it up he will figure out its not that unusual. Good luck.
Click to expand...

My neurologist actually just retired, so I'm being bounced back to the GP for everything again. He's (my GP) probably going to ask about it now that I think about it. He used to ask, back when I first started having neuropathy problems, and now I know why. I'll be bringing it up when I see him.
 
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