Amallia... Please come to the princip... - Functional Neurol...

Functional Neurological Disorder - FND Hope

5,580 members2,908 posts

Amallia... Please come to the principal's office!

29 Replies

So I read the other day where there is such a thing as an abdominal reflex test. Never heard of it.

What followed in the description was that this simple test MIGHT provide supporting evidence of the pathology of a neurogenic bladder.

I have been searching for this for months. After going through urodynamic studies, my daughters urologist said that the series of tests were inconclusive but she thought it was neurogenic but could not say for sure. She prescribed a pill that was supposed to indicate by its actions one way or another but we have not been able to draw a conclusion. Too many pills in this house.

I have not been able to advance her theory. Amallia, if you or others are out there somewhere and have knowledge of this, can you tell me if the reflex test can yield such a result?

Thank you for listening. If I could get one plate out of the sink I might be able to find the sponge to help with doing dishes.

How many times I was sent to the principal for mouthing off.

Dan / Seatyle

29 Replies

That title brought back some scary memories. Il do some searching and get back 😊

in reply to

Amallia.

You too huh? Knew my name all too well..

Don't Make this any work? I just wanted opinion. I value that. I just wondered how it all could be?

Did not know if you ran across it in your skill.

Washed out but trying to help daughter. Talk next few days.

Dan / Emerald City

in reply to

Ok stupid uni alumni advantages of being able to use their library never works so have to yell at them every few months to reset my password.

Uni is good for medical up to date papers that we can't get without paying 1000s for the journal but it's a bit limited.

Il see what I can get elsewhere and message you tomorrow

in reply to

No-no Amallia.

No get fired up. Late over there. I can't access either because of fees. Let it go.

Will do the long way around by surfing word combos.

Just picking your brain. Did not know if the idea made any sense.

Rest. Sleep. That way more important.

Dan / S

in reply to

No I will get on because I'm using uni to write my book. Just have been distracted lately.

Just googling right now. I'm up late because of long day yesterday and lots of sleep today.

Another hour then bed. I need to introduce you to my friend Jarrad he is the male me. We are both obsessed with researching.

If I told him about this site he would probably be on here and working at the same time.

We worked together and both had super fast brains.

in reply to

Amallia.

You in high company. I am not a researcher and do not want to bother you. You have quick brain, but this must wait. Please!!!

Dan / S

Ok il give you a proper answer hopefully by tomorrow?

in reply to

Sleep dang it!

Nurmi good at research on net. Maybe he see this tomorrow and pick up something.

Gotta fix dinner then crash. Bye.

Dan / S

nurmihusa profile image
nurmihusa in reply to

Test doesn't work if you're fat. I'm too fat. Sigh...

in reply to nurmihusa

There are many factors that would stop it working. I don't think it's the best test for anything

in reply to

Amallia.

That a girl!

Dan

in reply to nurmihusa

Nurmi.

Sense of humor intact.

You passed.

Dan

Amallia.

I am so sorry. I am losing the ability to "hit the books" as they say. No longer able to find, absorb and connect the dots anymore. The brain just doesn't want to do it. Says no when I call on it.

Terrible to be aware of what is happening.

I will quieten down. Night sister.

Dan / S

Hi Dan, I don't think there is much evidence out there on this one.

From what I can see the abdominal reflex test measures tendon reflexes obviously but for nerves and synapses going from T7-T12 and is used for possible steps towards diagnosis of neurological damage injuries and diseases such as motor neurone disease but is not a definitive test.

So for the bladder the reflexes there would be lower down in the pelvic area and the reflex tendon would come from the sacral area (tailbone).

You could ask a doc when she next sees one but I don't think this is the best method for diagnosing neurogenic bladder.

I may be wrong 🤗😺😴

I guess it would be like if someone was in a motor bike accident and was losing sensation in an emergent situation one method might be to do the abdominal reflex test to measure loss as it wouldnt react to the tendon test as it progresses but a more efficient way is to use pin pricks.

And a tendon hammer 🔨

patti86 profile image
patti86

Oh my...you guys are great!

Dan, one of my many evidence based issues is a malfunctioning bladder. I have a post void of 150cc. which is not as bad as I have heard others have. when I saw the urologist I was told that I could try a few options. 1. there is a stimulator that can be implanted, 2. I could try a botox injection into the bladder, but was warned that it could paralyze my bladder. 3. take medication. I opted for choice #3... I take oxybutynin and Trospium Chloride.

I am not sure the exact issues your daughter is having or what meds they recommended. let me know if you still need help. I am always here to help. Non of this is easy.

Does your daughter also get palpitations? heart issues? One of my many diagnosis is microvascular heart disease. In my heart group, I remember reading a few discussions about how the small vessels are throughout the body and when you have micro issues it can and does impact the other parts / organs. so i wonder if that would also apply to the bladder? just a though to throw out there.

i do hope that your daughter and you find answers...sending positive thoughts for all.

:-)

in reply to patti86

And Patti.

The trospium was supposed to shed light on whether there was simple dysfunction within the bladder or whether nerve damage in activation. Still don't know.

The palpitations which we think initiated an arrythmia prior to the severe case of hives are ongoing.

This is where it gets really hard trying to correlate nerve issues with autoimmunity overlay and just what might be isolated organ dysfunction.

Gives only very narrow window to function where enough things go right so you can have a decent day.

Have no idea if MR neurography would help but may revisit.

Y'all picked up ball I couldn't run with and put some points on the board.

Thank you.

Dan / Seattle

Hi Patti, I'm waiting to see a rheumatologist now but I have I call them kidney but could be bladder issues but Iv just been ignored every time I bring it up Iv also had chest pain for 2 years. Also ignored. Hoping someone will start taking these symptoms seriously 😬

in reply to

Amallia.

Was keeping up with the nitric oxide synthases to L-arginine to L-citrulline triangle for conversion into nitric oxide for heart function and vascular resistance before gasket blew out. Gonna have to go in to garage for overhaul before returning to that kind of reading.

Secret service stuff. But I think the feed lines into endothelial function is an issue for us.

Out of my mind. Bye. Sleep well.

Dan / S

patti86 profile image
patti86 in reply to

I know how hard it is to keep pushing...I get it, been there, still am! 😬

It is not easy and I am sure sometimes you have to pick and choose what you will focus on since many here have so many issues. I keep telling my primary one day I will be a boring patient...but right now my body has decided to be a zebra.... if you can get my body to behave please try, since I certainly have no control of it these days. lol

Anyway, So I can see why you would ignore them. Feeling the doctors will not listen, since we all have experienced that. But if we are to get the doctors to listen we have to keep advocating for ourselves. you know? 😬 I do hope Amallia you do get those issues looked at. Just for peace of mind. you know? ignoring chest pains is not good. Same with ignoring the bladder and kidney issues. But I get it...

BUT, I do not think doctors get it? you know? If they did clearly understand that none of this is wanted, they would NEVER tell us its in our heads.....so when I hear its all in your head I want to explode....seriously, come on, none of us want any of this. 😬

I asked my #3 neurologist. when will I be able to just get up and walk without the use of these? ( pointing to the forearm crutches). she could not answer. just echoed back the same line..your body is not damaged, just the signal, so its all good. like really...that is suppose to give me comfort. that was so NOT helpful! I mean i guess its better than a patient with ALS who will deteriorate. and I am so sorry when I hear about all the "bad" stuff. and very grateful that I do not have all the "bad" stuff. I get that...but at this very moment I want my life back. I would give anything to be back to myself running, walking and eating. oh how much I would love to eat a cupcake. perhaps i should try right after my stomach stops doing its morning summersaults. 😬 lol

I am persistent..I am sure they see my name on their list of patients and cringe. OH NO SHE is here! anyway, I also asked neurologist #2 Dr G and I said I do not want any of this, I just want to go to the beach, walk and run after my grandchildren...when can I expect that to happen? he told me that he cannot guarantee that it will happen, but all I can do is keep trying & fighting, the hardwire is there, just have to re map the signals. 😬....yea told him sign on the line, I'm going back to work full time. part time did nothing. I actually think I need to stop working but I am not sure I want that. But also not sure I have a choice. you know?

Happy Thursday. Just one more day till Friday and the Weekend.

Positive thoughts! :-)

in reply to patti86

Ok Patti.

I will stand in line at bookstore for your autograph of the book you will write that will make you world famous. Title will be "Patti Goes to the Doctor.". It will be a fifty volume set.

Feel honored, I never stand in lines for anything. Always leaning on the wall...

You are only person I know who labels neurologists by number. That is unique.

Single comment back as you pretty much said it all:

I can no longer push for answers. So I now choose to be pulled into the vortex by sheer force of nature.

Question for neuros 2 and 3.

If signals travel a singular path through the nervous system, how do you propose to remap that, and, isn't signal damage still damage to the body?

You illuminated the day again.

Thanks Patti.

Dan / Seattle

patti86 profile image
patti86 in reply to

That is a great question...i will have to ask that when i see them next! If I understood correctly when they explained it....I think they compared it to that of a person who had some mild damage because of a stroke. the brain then needs to re map after, since once damage is done that part is no longer an option. Apparently with hard work and lots of PT you can regenerate the brain. I thought our brains were most pliable in the first 6-7 years of your life, but he seems to think we can. I mean I remember that senator learned to speak after her brain injury...so perhaps anything is possible. Oh wait my insurance denied PT...said I could have 4 more weeks which should be ample time to get back to the doctors for more medical intervention...i kid you not. I am thinking they are not liking the "functional gait diagnosis"...right?

I do love your book idea...I have such a unusual case. right? Have you ever heard of a TV show called "House" .....I need a doctor like house. right?

I also understand the I'm done feeling.... I am approaching the limit for my tolerance and I am new here. Im tired beyond exhaustion... and why does it always have to be a fight? Perhaps I do need to apply to the rare disease clinic. Heck I might qualify was what the Rheumatologist said as he informed me he had nothing left for me. ahhhh to be dumped by a very well known doctor.....but it will be alright... I think those are the words in a song. I just need to chant it over and over like Dorothy in the Wizard of Oz...we are all in the land of OZ. right? yellow brick road or the roller coaster from ______...none are in our control...only our Brains...which are apparently are on strike and protesting. For me I sure wish my heart and lungs would behave and start getting along. My GI track needs to start working and Man my brain and legs need to listen to each other. do you think I should put them in time out? I mean given the homework I have from PT...its the same I give to children learning to walk. Im a toddler all over again. lol

thanks Dan....you always make me smile and it was a tough day. I needed this....hang in there and try not to let them pull you and your daughter in too many directions. been there done that...man it hurts!

Positive thoughts for all!

Patti :-)

in reply to patti86

I think the brain is capable of anything we just don't have all the tools yet.

Iv seen patients who have been in comas after accidents or what we class acquired cerebral palsy in adulthood from accidents where they are like stroke victims they have to learn to walk and talk and feed themselves and become continent again and have conversations that make sense.

I saw a group of kids who were all badly injured from an accident and the worst left in a wheelchair, parents told they wouldn't walk or talk or function again.

A year later that same kid came in on crutches to our day clinic for Botox injections. She didn't remember me and she still had difficulty speaking but she got a big hug 🤗

patti86 profile image
patti86 in reply to

So true...its amazing what the brain is capable of. I am always hopeful...when I'm not so exhausted. perhaps tomorrow when i find myself out of the land of OZ.

Love your wise perspective. which I share most of the time. Thanks for the big virtual hugs...when they arrive ill send them right back to you.

so glad that I fond the forum...Happy Thursday. :-)

in reply to

Amallia.

Self repair can do amazing things. I just think we come out a little different on the other side.

Great thought.

Dan / S

in reply to patti86

Patti.

I know you are beyond limits and tolerance.

Yes, I did watch House on TV.

I understand damage and self repair regardless of where in the body.

I do not understand "signal malfunction" with no detectable damage and selective decision by brain to go build another highway to communicate through because it wants to do that.

I get that in situations of tissue damage, the brain might become maladapted to that damage and cause dysfunction, much like a roadway that gave way in a flood.

But, to take that maladaption to extremes by saying we can retrain the brain to go back and use the old roadway MUST ASSUME THAT IT WAS REPAIRED AND IS USEABLE AGAIN .

How could doctor know this as science unless it had confirmed that damage in the first place and then subsequently confirmed that repairs had in fact been completed and was open to traffic again.

I have not read any research validating that these two events took place while in the meantime the brain had installed a brand new highway to put into use.

I am sorry. This is scientific conjecture. Ray Bradbury might call it science fiction.

I know my brain maladapted to injury. I also know it has never returned to what was normal regardless of pathways available.

This perpetuating impairment is part of my overall disease condition.

Medicine must look harder at all of this and postulate something that actually makes sense.

Much love. Talk tomorrow.

Dan / Seattle

Amallia and Patti.

Thank you both incredibly much.

More thoughtfulness beyond wildest dreams.

Yeah. Incontinence for us both. Mine more sporadic than hers. She has had cardiac MRI with abnormalities but yes microvascular on the radar for us too.

Thank you for wise opinions.

I don't like deep water. But we are in it. Both have Tarlov cysts. Hers is larger and more proximal to pelvic area. Everybody and brother says these things are common but we have no idea role these things play..

Doctors too have more questions than answers but bias is that some things are disrupting nervous system below the brain as well as in it.

I hope to return favor back to you both. I really, really value what you say.

Dan ,/ Seattle

patti86 profile image
patti86 in reply to

I understand Dan, I hate deep water too. right along with rollercoasters. Afraid of the sharks and hight..yup totally screwed.... I can send you a life boat. But unless the doctors have to air to blow it up Im afraid it will be of no use for either of you. 😬

Also have Tarlov cysts...also told they are common and mean nothing...its an incidental finding. seriously. one issue might be an incidental finding...but when there are a list of them...yup totally normal! 😬

I am sorry your daughter had an abnormal MRI. Microvascular heart disease is not an easy one, a lot like FND, it is not well liked in the medical world. Not easy to test and clearly label..its more of a diagnosis of exclusion. 😬 My cardiologist is treating it as such but will not label it. His reports state suspected. cannot rule in or out but will treat the symptoms. so I guess thats a good thing. My heart sisters do not agree and I am in the wait game to find a cardiologist who will do the test to assess it. I am scheduled in August. anyway....He recently changed my instructions and prescription of nitro to..."take 1 tab under your tongue every 5 minutes as needed". It use to state after the 3rd time go to the ER. which we all know here is NO FUN! 😬 Since with microvascular NOT taking your nitro will be more harmful than taking it. during a spasm the tiny little vessels close and if enough of them close it can be harmful to the heart. He was like well we certainly do not want you to have a heart attack when I saw him last and he doubled my slow release nitro. Since one of the main treatments is taking nitro. The pharmacy had a fit at the amount. lol I am on bot a slow release nitro and then the fast release tabs you take. I can tell you most doctors freak when they hear I take 6+ nitro in a day. I am so use to it. I know the first time I had another doctor question the amount of nitro...and so I 2nd guessed and asked my cardiologist. he responded that is because he is use to it being in the content of blocked arteries ( horses ) but thankfully you do not have that type of heart disease... ( zebra) Im okay with the amounts of nitro you are taking, just take your nitro. 😬

always here my new friend....and as always, sending positive thoughts.

:-) Patti

You may also like...

A little politeness please?

but yet again have been treated like a prize plum. She then told me to go to www.neurosymptoms.org...

Fludrocortisone update for low BP.

quality time. Docs regrouping to decide on testing and who draws the short straw if it is...

Honest opinions please

good though) Terraced ... I'm worried my kids might be too loud and we'll get kicked out 😱😂😭 No...

Coming to terms with FND?

hour, she always feels it's not enough and wants to work again and have her body back again. She...

Help, I have an appointment for PIP assessment coming up!