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Not a UTI
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Not a UTI

     I was wondering if anyone has had all the sx of an UTI
but test were negative for UTI or any bacteria.

    The pain was HORRIBLE! I thought for certain I had a UTI but did not.
The pain and spasms (urethral) were the worst ever.  In fact I even doubled
up in the Azo-Standard (for numbing) and it was still bad. Anyhow, the nurse
told me there was a name for this...and I can not think of the name of it to
save my life. To get a bit of relief I sat in a tub of hot water. Just enough water
cover my bottom area.

     She also said that this can happen w/ MS?? It's some kind of a spasm in
the Urinary tract. Does this sound familiar to anyone????
I am still trying to learn a bit everyday since my actual dx.  

As a side note.......I do in fact drink LOTS of water and added cranberry juice to the mix.
I do allow myself to have (1) glass of tea on most days.

Thank you for any and all info,
~Tonya
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20 Comments Post a Comment
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Avatar_f_tn
I'm still not diagnosed yet, but yes, I've had this problem numerous times. What's made it so complicated is that I've had a lot of trouble with UTIs  - been hospitalized with an infection in right kidney a total of five times since I was 20.

I was eventually diagnosed with intersistial cystitis, but now they're thinking likely neurological. I've read in several places that this can be caused by MS - but I'm by no means an expert. Some of the others on here are probably more knowledgeable.

Best of luck!

Cass
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560501_tn?1383616340
Thanks for commenting back.

   I have had a couple uti's in the past but nothing chronic.
Are you currently seeing a good Neuro?

Thanks,
~Tonya
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531519_tn?1307636285
Hi Tony im bumping this post in the hope that quix or lulu will jump in with their wisdom. I have had this problem for months now it has not gone away it just eases up a little then comes right back. I feel for u as i know what u r going through. Feel better soon.
Take care and be well
Hugs Julie x
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Avatar_f_tn
Hi Tonyad,
I have been suffering from the same problem for the past 5 to 6mths and have just got some relief from it now, so you have my sympathy and understanding.

I had really bad burning sensation in my urethra and vulva area and thought that it was a UTI so I went to my GP to get it checked, I did have blood in my urine (only small amount) and  protein so a urine culture was sent to the pathology lab, I failed to grow any bacteria, I had no infection.  This was tested several times and I swore that I had a UTI but I never did.

My GP thought it was neurological but my neurologist thought it was not.  He said although some of my problems could be caused by my neuro issues he thought it was a separate issue and sent me to a urologist.  My urologist did a very thorough investigation, from CT scans, Cystoscopy, Ultrasound, Kidney Function tests, STD tests etc. etc. and he reckons that I have Urethral Syndrome.

Basically it is where you get burning and discomfort and it feels like you have a UTI but you don't, I also was getting the urethral spasms that were very painful, I am now on a drug called Vesicare and it has helped, my urologist thinks my problem will eventually go away ( I hope so), he said some of my problems are neurological as well.  Vesicare is also used to treat bladder urgency in MS and bladder spasms in MS.  My GP still thinks it's neurological, I am undecided but I have relief so that's the main thing.  Apparently it is often seen in people who are peri menopausal so it could also be hormone related, they don't know what causes it. Sometimes when my bladder spasms I expel urine with the spasms.

I am not diagnosed with MS but my neuro believes I have had an episode of TM that has caused spinal lesion, he didn't think this was a neuro prob as it was too localised in the absence of other things but he too was not certain...,. confusing, you bet..

I do know how you feel, it's the worst place to have pain... I hope you get some relief.  If it continues I would go to either your neuro or a urologist.

I take it you are diagnosed with MS?  Where are your lesions? My neuro suspects T10 and cervical..

Cheers,
Udkas.
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Oh I forgot to add that you might like to try something like Calcium so your urine is not so acid.  I take a calcium supplement with Vitamin D in it,  this was recommended by my neuro) cutting out tea/coffee is meant to help but it is really trial and error everyone is different,   Urinate after intercourse, drink lots of water, sometimes feeling more uptight can worsen the spasms, I can relate but the vesicare has stopped my pain and spasms.  Cranberry juice although it's good for UTI prevention is meant to be the worst thing going for cystitis or uretheral syndrome.., i find champagne makes my symptoms worse, which is a shame as I am a bit partial to champas...lol

Udkas.
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983008_tn?1329929430
I was very interested by this - I've had 3 nasty UTI's this year but I've also had the symptoms of UTI twice since August (both following a symptoms flare up) and the urine test came back from the lab negative

I hadn't really connected the false UTI to the symptom flare until just now - I also have the hesitancy/urgency thing - will mention this to the neuro in January

Val
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560501_tn?1383616340
Thanks to all of you for posting to my question.

Yes, it does seem as though we all have similiar sx.
The spasms were so intense! Actually, I would have rather it had been
a UTI then just those spasms.

I also had a culture sent out and .....no growth. No blood or protein either,
Val, I did have that urgency feeling also.  :(
Anyhow, I am just glad that it is over for now.  However, I do every now and then
get a twinge of a spasm that makes me feel like I am going to have a UTI but
then it subsides.

Thanks again,
~Tonya
ps..if this is neuro (MS) related.....I had wished and wished that out of all things
to be affected, my bladder would NOT be one of them!
Besides, hoe would I look in a thong over top of an adult diaper or those bladder
control pads......Not very sexy!!!  lol
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have you been tested for retention?  The bladder spasms was one of my issues when I was dealing with retention because I really had to go but could not and my bladder was stretching and backing up to the kidney.
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I am so glad for you it has gone away, but I would certainly get everything checked out, I was having a specimen go to the lab every week but I never grew any bacteria, but they don't test for all bacteria either, so you could have a strain they don't test for, did you try antibiotics to see if that helps?  I found no relief from anything and I had urinary urgency and retention, the sensation of not emptying my bladder properly either.  

My Urologist believes my problems are a combination of both urological and neurological but I haven't been back to the neuro since I seen the uro, so it will be interesting to see what he has to say.  I still have some spasms and some discomfort but not to the extent of before.  They performed a urethral dilatation on me as well to see if that would help.

But do get symptoms checked out and do mention it to your neuro and let me know what he/she has to say about it as I am very interested.  Apparently the thoracic feeds these nerves in that area, that is why I asked where your lesions were.. Sorry for the ramble but i am hoping by sharing info we can help each other.

Cheers Udkas.
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560501_tn?1383616340
Hi again  :)

No, I have not been tested for urinary retention. Perhaps I will talk to my
Neuro about a referral (sp) ?

Yes, I did take a course of antibiotics...I guess for that reason you had
mentioned Udkas?  And a Urethral dialation sounds like "No Fun".  But,
whatever it takes to get to the bottom of whats is going on (no pun intended).

I know that I am still new in learning on all the MS stuff since my dx but,
I thought I had read some where that the spasms (urethral, urinary tract)
where pretty much linked to MS if it were an MS patient?  I mean that may
NOT always be true, but......well, I guess I am just thinking out loud. lol

And I will keep you updated on what I do find out. And if any of you all have
anything enlightening to share please share.  Have a safe New Year!

~Tonya

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147426_tn?1317269232
Great discussion and !!! I have little to add.

The spasms of either the urethra or the bladder detrusor muscle can be excruciating.

Also, there are such things as viral infections of the bladder.  All the signs and sx, with WBCs and sometimes blood, but no growth on culture.

Women should also have a gyn exam to make sure nothing is hiding there.

Q

Q
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560501_tn?1383616340
Thank you for responding.

   I do not mean to sound ignorant, but, Like what could be hiding there?
Do you mean like a tumor or cervical or uteran (sp) cancers?
And.....I learned something. I did not know that you could also have a viral
infection of the bladder. Or even bladder cancer?  I "HATE"
that cancer word!!!!!

   I am actually having my yearly gyn exam in a couple weeks so that's good.
Be safe,
~Tonya


   I am learning everyday so Thanks again for all of you responding.
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560501_tn?1383616340
Me and my goofy brain!!!!!

Second paragraph should have read.............

The Bladder cancer should have been up by the cervical and uteran (sp)
cancers. Because I know that you can hacve cancer anywhere, but
did not know that you can have a viral infection of the bladder..

There!  Just needed to fix that.....

~Tonya


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When they tested my urine they found white blood cells (leukocytes  present) and protein but then they went away, but I had the full kidney function tests, bladder examination (cystoscopy) and a gyno exam, and I agree Quix bladder spasms are awful, I reckon they are worse than labor contractions, infact I am having a bit of a day with them today but it's very hot here and all my symptoms are off the scale today.

If the drugs I am on now don't work the next step was botox and I was going to go for it as I was so, so desperate.

Tonya where are your lesions?  Do you have any in your spinal cord???

My MS neuro did say that the white blood cells could have something to do with me not emptying my bladder properly, so indirectly my probs were most likely caused by my neuro stuff, well some of them.

Well I am off to party as it's New Years Eve here. Whooooooooooo  hooooooooooooo.

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983008_tn?1329929430
oh, my last urine test showed leukocytes but I didn't know what they were and my Dr didn't seem concerned so I didn't ask - he said there were other reasons why they would be there but he would send the sample off to the lab - it came back ok

should I be mentioning this to the neuro??

Val
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I had the spasms in my bladder,  and could feel them right through to my back, they kept me awake and made sleeping difficult.  Only thing that helped was a hot water bottle, or turning up the heated seats in my partners car when driving.  Or a hot bath but I'm not much of a bath person
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560501_tn?1383616340
   Ditto for me. Any kind of heat on there is what helped it.
I am sorry that all of us have this pain/spasms but glad
to lnow that I am not the only one.
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I have a lump that I found when my clitoris started hurting back in December of 2011.  The lump is still there.  The pain is now in my urethrea, no infection.  Everything is on one side ... burning, dryness, piercing pain, throbbing, feeling like I have to urinate often, not knowing IF i have to go, then accidently going because the pain is no different full or empty.  There is a name for the lump being there causing nerve damage to the clitoris & urethrea.  I forgot the name of it.  The lump cannot be removed.  The lump is very very small and I have had half the doctors that examine me claim they can't find it.  Regardless, it's there.  If some can find it, I can find it, it's there.  There are two options.  Nerve medication which is too much for my body to handle (I have MCS), or reconstructive surgery (disconnect the nerve to the clitoris & urethrea) that side.  I am waiting for disconnection.  In the meantime, I apply benzocain to the areas that hurt so that I can apply tea trea oil.  These two topicals are helping me stay sane.  I am also, since diagnosed, consuming marijuana leaves, eating them or making tea.  This is the only natural remedy that will relieve nerve pain.  I have MCS so I have to stick to natural medicine.  There is no enjoyment consuming the herb, the only thing I notice is that the pain is reduced considerably for 3 to 4 hours vs. benzocaine/tea tree oil topically which lasts 10 to 30 minutes.  
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2112931_tn?1335102002
Oh wow. I'm glad I saw this post cause if MS does cause uti or symptoms that feel like a UTI, that would explain twice in the past two years that I swore I had one and went to the doctor to find out I didn't have one. I felt like I was losing my mind and that the doctors thought I was crazy. I am actually typing up a full list of all the symptoms I have had for the past 5 years to give to the doctor.

TexAlaskan, I sure hope they figure this out and you will get better. This is an awful type of pain to have.
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Avatar_f_tn
my urologist attributed mine to bladder spasms, and sitting on a heating pad sometimes helps, as weird as it sounds.  there are also bladder spasm medications that are not too expensive......I took them for awhile and then discovered that a folded heating pad between my thighs also helped, on low, it gently relaxed the offending bladder.......

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