Neurogenic Bladder...MS?

[Hope2530]

Hello. I am new to this forum, and a little nervous to be posting. Hopefully someone can at least help set my mind at ease.  I am currently waiting for preauth from my insurance company to get an MRI of my Thoracic Spine with and without contrast as well as of my lumbar region with and without contrast.  Once that is done my Neuro stated she'd probably like to see my brain too.  My main symptom has been Neurogenic bladder and chronic UTIs.  I have had the UTI's since birth but the neurogenic bladder is more recent.  I must practice intermittent self catheterization on myself every time I have to urinate.  I am 30 years old and have struggled with the bladder issue for the past 5 years though now I am unable to urinate on my own at all (I can however feel when I have to go).  I also have no feeling in the back of my left thigh.  This can tingle at times (or feel like warm water was poured on me) or feel achy as well and my tailbone region also can be achy and feel stiff.  Occasionally I have a warm sensation in my left foot however the skin is cold to the touch.  My Neurologist poked me with pins all down my thigh and I was not able to feel anything...i have feeling in the rest of my leg and total feeling in my right leg.  My Doctor said i passed my neurological tests (except my toes did react or move in any direction when she did the foot test several times) but she didn't seem too concerned.   My blood was tested for everything they could that would show fatigue, which i have also been feeling.  I was negative on everything except it showed that my Epstein Barr was active again (i had mono when i was 17 pretty severely).  MY GP assumed that  the EBV accounted for my fatigue but still with everything else made sure I saw a Neurologist.  All in all, i am just stressed out.  I know it will be quite awhile until they find out what is causing my symptoms but I cant help but worry.  MS has been brought up by my GP, Urologist, and Neurologist...however they also stated there could be other issues such as infections/birth defects etc that  may be the cause.  It is frustrating that i feel like my body (bladder) has stopped responding...though I know I can handle doing what i need to do in order to empty it and protect my kidneys. The numbness and tingling which is fairly new to me is a bit worrisome.  What I am curious to know is, Is it possible to be diagnosed with MS or another autoimmune disorder when you only have one or 2 symptoms?  Do a lot of MS patients suffer from Neurogenic bladder?    If anyone has any thoughts or insight or any similar symptoms, I would love to hear from you.

Thank you kindly in advance.

Hope2530

[weeblzwobblz]

Antalya,

I know I have a UTI because when I pee, it burns soooooooo bad.  Sometimes, my urine will smell like feces.

Yes, the cystoscopies I've had hurt.  I've even bled afterwards because I had a UTI and the scope scrapes the sides of the urethral wall.

I've had a urodynamic test.  They had me void when I first got into the room.  (They have you take everything off and put on a gown.  They even have you take off your socks)  

They catheterized me to measure any residual urine in my bladder.  Then, they introduce a tube into the bladder and drain water into the bladder.  They want you to hold the water as long as possible.  The reason you don't wear socks is because you will release the water.  It sounds gross and messy but there's no other way to do the test.  They do this several times so they can measure how long you can hold the water.

I didn't do well at all.  As soon as they put the water in, it all came out.  I was not able at all to hold any water, even after several attempts.

If I were to have to go through this again, I would take some baby wipes to wipe my legs and everything else after the test is over.  Even though it's just water, I felt dirty. hahaha

It was a little uncomfortable but not much at all.  I hope this will ease your mind a little.  

I hope your test is in the morning so that you feel fresh.  I have no bladder control right now and am very self conscious about peeing on myself and smelling.  I use depends 24/7 but there's no way to get rid of odor!

Best wishes to you, on your Urodynamics, Antalya.  I hope you will keep us posted and let us know how it goes.

[Antalya]

Since this is such a urologic trail of messages.....

Do you guys know when you have a UTI?

Do your cystoscopies hurt?  (Mine did)

I am supposed to have a urodynamic test and am dreading in.  Could you comment?

Thanks/1

[Lulu54]

You may not realize that you have posted this one a very old thread and probably won't get an answer about Jax infusion sites.You might try his Facebook page for more information. I hope you have good luck on tysabri - that is what I am taking and have no new visible lesion activityafter a year.   `

[weeblzwobblz]

Welcome to the forum!

First, I want to tell you, I am so, so sorry for what you are experiencing!!  I, too, have major bladder issues.  Neurogenic Bladder.  I had the Inter Stim Implant a little over a year ago. Until recently,  It helped with the all of a sudden urge and loss of control.

I was hospitalized in August and November for UTI/Bladder Infection and had to have IV's at home for two weeks after the last hospitalization.  For four years, I've had to wear Depends 24/7.  It's depressing to be 49 years old and not be potty trained. :(

I really can sympathize with your situation.

I have RRMS w/a lesion on spinal cord.  All I can say is that MS affects everyone differently.  I would encourage you to consult with a Urologist if you haven't yet done so.

Also, work closely with a Neurologist.  If you have a Neuro who specializes with MS that would be great.

I searched from Dr to Dr for 25 plus years to find out what was wrong with me and wasn't diagnosed until about 5 years ago.  I hope you find out soon what is causing your problems.  Best wishes to you!

[ozscott]

Where in Jax do you go for your infusions?  I have been looking for a list of sites since my neuro  was considering placing me on that drug.

[SarahL2491]

google will give you MS as a possible for almost 90% of what anyone puts in, that said.........

you might want to consider a urologist to work on your bladder problems.  they are going to have more answers than the neuro, even if you should have MS.  They would be part of your health care team.

Welcome to our forum but hope we don't have to save you a "corner" of the room.  You are most welcome anytime, regardless and I hope you get some answers

[hydophotis]

Hello Hope. I have urgent bladder issues and great difficulty walking with numbness in my hands and feet. As a result, I keep a urinal beside me by the couch. And I help empty the bladder by massaging, essentially poking under my belly button to 'coax' it out.

Also have chronic diahrrea and until recently lots of back pain and extreme stiffness in my legs. I was diagnosed with MS in 1997 and no longer can work.

Everything changed in May with the installation of a baclofen pump inside my gut.  The pain in my back for the past 25 years is gone. I can reach my feet like a long lost friend. I urinate every 1.5 to 2 hours instead of every 20 minutes.

I am on Tysabri. One exacerbation in the last 3 years.

I can exercise again.

A lumbar puncture and MRIs confirmed the diagnosis.

I'd be happy to talk with you or anyone else about my experience.

This my first time posting here. This link came up via my 'multiple sclerosis' Google alert. You can look me up on Facebook. Michael Burrow in Jacksonville FL.

[kwarendorf]

Hi Hope-

Most treatment for MS comes on 2 fronts. The first, and most important, is trying to contain the disease. They can't cure MS but they have developed all kinds of was to try and prevent it from progressing. This is what Disease Modifying Drugs (DMD's) are used for. DMD's include drugs like Rebif, Avonex, Betaseron, Copaxone and my personal favorite Tysabri.

The second front is to treat the symptoms directly. For my neurogenic bladder issues I take a drug called Tamsulosin (Flomax). It's primary purpose is to treat men with enlarged prostates. There is absolutely nothing wrong with my prostate, but my MS tells my bladder function that there is.

I also have neurotically pain in my feet. I take two meds for this; Elavil and Neurontin. Elavil is an antidepressant and Neurontin is an anticonvulsant. I'm not depressed and don't have convulsions but the combination seems to keep my foot pain triggers from misfiring.

Now that the dots have been connected, for me, I have been able to relax and fight the fight on both fronts. I no longer need to worry about finding out what is causing all of the disconnected symptoms.

Kyle

[rendean]

Hi Hope,

You're welcome. Feel free to return with any updates and with all the questions you may have. We may not have all the answers but will do our best to help you find them!

Take care,
Ren

[Hope2530]

Hello Ren,

Thank you for the welcome and the link to the site! That information is really helpful and I appreciate you stearing me in that direction so that I can be well informed and learn more about my symptoms.

I appreciate this forum and do look forward to continuing to work wth my doctors to find out what is going on.

I will also update everyone on my status and findings if that is ok, as I am sure I will have more questions as this investigation progresses.

Thanks again,

Hope

[Hope2530]

Also---thank you for your kind and welcoming words, it helps to have a forum like this that allows you to interact with others who understand and are supportive.

[Hope2530]

Thank you, Kyle.

No, a Lumbar puncture has not yet been mentioned, but I did just get to see the Neurologist a few days ago.  She mentioned looking at the (2) Spinal MRI's first and then she said she may want to look at the brain...I would assume if the brain MRI shows anything MS related then she will want to do a confirmation with the spinal tap.  

My blood tests ruled out Diabetes, Thyroid issues, low B12, anemia, Lyme disease, HIV, Lupus, celiac, kidney disease, electrolyte imbalances, high blood pressure/cholesterol etc.  The only thing that was abnormal was my flare up of Epstein Barr.

You are right, it is frustrating but I have suffered (at least with the neurogenic bladder) for quite some time so I suppose I should stop trying to avoid finding out the cause...I think I have been very scared to most likely have to face reality that there is a bigger reason for my bladder issue.  

I am hopeful going forward that i will get an answer to the cause of my symptom but I know it will take time.

If I may ask, have you found any relief of your symptoms via any treatments once your dots were connected or have they been something you just had to get used to?  I dont want to come across as ignorant, I am just very curious about other's thoughts on treatment.

Thank You,
Hope

[Hope2530]

I apologize for typing in all one large paragraph, as stated originally, I have never posted here before and didnt realize untl after i posted how long my post was.

[kwarendorf]

Hi Hope- Sorry you're having a tough time of it.

While MS could connect some of your dots, your dots may not be connected. I have had lumbar spine issues that caused problems with my legs. I also have leg issues that are caused by MS. I also have neurogenic bladder issues.

I bring these things up not to confuse you, but to let you know that the diagnostic journey can be long and frustrating. You sound like you're off to a good start with your GP, Urologist, and Neurologist all on similar pages. It's important that you make sure they are all in the loop.

I tried to deal with my symptoms individually, and while there was some relief, there were no answers. A lumbar laminectomy fixed most but not all of my leg issues. Trips to a urologist provided little relief for my bladder issues and no relief for my ED. I never did get around to dealing with my tinnitus :-)

It wasn't until I had a complete melt down a year ago that MS became a possibility, and proved to be the Great Connector of Dots!

One or two seemingly unrelated symptoms is enough to merit investigating MS as a possibility. If they find no smoking gun with the thoracic and lumbar MRI's, I would press for studies of your brain and c-spine.

You said that you have had all of the "rule out" blood tests. Has there been any discussion of a lumbar puncture?

Kyle

[PastorDan]

Yeah, what Ren said.  Welcome.

One request:  try to write in shorter paragraphs, please.  Many of us have eye problems, and large blocks of text are very difficult to follow.

Much of what you describe sounds to me (not a doctor; don't even play one on TV ;>D ) as though a pinched nerve, such as sciatica, could be involved.  I would expect that lumbar spine MRI to give some clues, if that is the case.  That might even be something they could fix!

We will pray that you get accurate answers, symptomatic relief, and hope for the future.  Meanwhile, enjoy the folks you will meet in this forum; I've found many to be a great blessing.

[rendean]

Hi Hope,
Welocme to our community. Yes, some people have few to no symptoms and are diagnosed while having an brain MRI for some other reason. Othes have many symptoms. Each case of MS is unique to that person.

You do need to see an  MS neurologisist so thst you can have all the MS mimics ruled out as there are many! Your symptoms do seem to fit MS or some othre neurological disease but it's up to your docs to make that diagnosis , we can only share our own experiences.

we do have Health Pages that are to the right of this coulumn and deal witha variety of subjents. Most were written by a retired pediatrician who had MS , others by  those in the medical field. ALL are backed by scientific  evidence. the link to the MS mimics is;

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Mimics---Part-I/show/375?cid=36

There are also several on neurogenic bladder and incontinenence.

Please feel free to return with any questions you may have. We are here to help share experiences and give advice.

Wishing you the best,
Ren