MS and urinary tract infections

Hi Eleanor,

I am not diagnosed.....so not sure how my story connects....but potentially relevant.

I began getting very frequent UTI's ten years ago.......then started to get UTI type symtpoms, (i.e. uregency anfd frequency) constantly.  I had many urologist appointments, examinations, drugs, uroscopy, and even surgery.....but nothing helped.  I learnt to just live with the symptoms, thinking that it must all be in my head!

Now that I am getting my other neurological symptoms my neuro is pretty confident that it's all linked.....and potentially started with a ms relapse.

My research certainly shows that bladder issues and ms are linked....but again, I guess many other conditions are linked to UTI's too.

I hope you get answers soon!

KAS

Urinary tract infections and MS are linked because the bladder is a muscle, and much of the internal plumbing leading to and from the bladder (and bowels) are muscles.  And there is an intricate "dance" between the muscle groups necessary to expell waste. If the signals from the brain (or spinal cord) aren't getting through properly...or aren't getting through at all ... at least two things can happen:

You get a lot of bladder infections -- true infections, where there is protein or bacteria evident in the urine (through medical testing, not by eye..although sometimes, if it's bad enough, you CAN see the "stuff" floating in your urine! Yikes!)

or what "feels like" a bladder infection -- the pain, the spasms, but no infection.

Many of us went through years of repeat visits to the doctor to treat "bladder infections", only to discover there was no INFECTION, but instead a malfunctioning bladder.

If the bladder holds urine for a long time -- which it can do, if you don't get good signals to go and pee, the waste starts to deteriorate, bacteria develops, and you get an infection.  Or if your bladder gets spasms -- like other muscle spasms that we call "spasticity" -- then you're running off to the toilet, and then to the doctor, thinking you have a bladder infection.

If you get a TRUE infection, and leave it untreated, it can lead to kidney infections, and kidney damage. Definitely not a good thing.  So it's always important to get your urine checked to see whether indeed you have an INFECTION, and need antibiotics...or if what you really have is a "neurogenic bladder" -- no infection, but pain, spasms, frequency of urination which sometimes produces no urine at all, other times a lot; incontinence.

When I was first diagnosed with MS, I only had an ob/gyn, and I was running to him almost every other month with what I thought were UTI's.  It was he who actually diagnosed MS -- or at least "neurogenic bladder", and sent me to a neuro...who diagnosed MS.

Antibiotics will treat the infection, for sure. But sometimes, if you've left it go for awhile, you might need "heavy duty" meds, or take meds for a long time (some folks actually take something forever).  If you have a neurogenic bladder then drugs are available for that, too -- you've all seen the ads for these: Detrol, Ditropan...which both come in generic versions, too.  So you don't need to suffer with this. There are meds which can help. But first you and your doctor have to figure out "which is it? Infection? or 'neurogenic bladder"

Uppity..

Thanks for all the detail you put into your last e-mail. Can you please answer a few more questions?

I went to a neurologist today and mentioned my bladder infection that came out of no where ( I think) and the fact that I've had a strong history of Uti's and diagnosed with Insterstial cystitis. He asked me if I had incontinence...When I said, "no". He discounted the link between what I'm experiencing and MS. Do you agree? Does there have to be incontinence for it to be MS related?

Also, I was on a low dose antidepressant for relief of Interstitial cystitis and it did work since IC can be linked to nerve damage. I weened myself off, and I'm thinking I should go  back on. I'm wondering if the Ic is linked to MS or something else neurological within me. Any thoughts on that?

Eleanor

Thanks..
The antidepressant made me constipated, and I was concerned it was preventing me from losing weight.. Not good enough reasons..

Eleanor

I am on preventive antibitotics. I have a neurogenic bladder w/o frequency.

Use a cath to void (no sensation)

To make certain these are real uti's and not just muscle's and spasms , make sure the culture for bacterial colonies are grown at the lab.

You can develop a tolerance, as antibiotics kill good bacteria along with bad, this is why i mention probiotics. Also if you get more than 3 a year, medicare will pay for closed system caths. Dramatic fewer infections have been reported.

I've found out that the exac's i get due to these infections are called pseudo exac's. Meaning they come from the inner body temperature being elevated.

I agree that its of great importance to discover if these are true infections. As long as you are infected, it will kick up a host of other issues in most.

Since being on preventive antibiotics, my symptoms went from tons to none (for now)...i now call the ones that are not brought on by infection "true exac's"

I also was first dx'd and told about MS by professor of surgery in urology.

Please try to use even baby wipes after urination, and there is proof that cranberry can help prevent.

A test in your gp's office can let you know if its just muscles your feeling or if there is true infection.  If culture is grown in lab. Plenty of fluids is also key.

Imagine being in the sun without a cooling vest.....you get the same effect with a bladder infection.

Macrobid and Bactrim are the only two used in low dose for preventive or compression antibiotics. Its stopped my monthly exac's , largely due to stopping the inner core from being heated up.

 P.S. they never go by my symptoms thankfully but , rather , test for infection which always seems to be there montly. Even before MP. They explained to me that since it's neurogenic it allows the urine to stagnate and therefore become infected.

wish you luck

p.s.  i have no frequency until the infection is well under way. My uro felt that indeed it was uti's.

Kiera

That first post confused me as, i have a neurogenic bladder And infection...30,000 colonies. So even with neurogenic , your prone to get infections. I guess what you were saying is neurogenic can produce the same type of symtpoms at times.

thanks

k

I am constantly getting UTIs (about twice a month).  The urologist said I have a neurogenic bladder and a spastic bladder and a bladder that doesn't empty, along with MS.  This just started about 8 months ago.  I've had to catheterize and that has put me in the ER due to reusing the catheter (which they said was fine with soap & water).  I have had the disposables when it's in the budget (it's about $8 each), but I feel the catheter is also adding to the problem by pushing the bacteria up the urethra.  My boyfriend and I are so careful and clean when we have sex.  I like the baby wipes tip.  Does anybody have any more tips? 

I also wanted to add that I am seeing a naturopath, which in 3 months has helped dramatically.  I don't have fogginess and dizziness anymore at all and my walking is getting much better.  We seem to be at a loss where my bladder is concerned, though, other than not having sex at all.  If anyone wants to read my naturopath's book it is Healing Multiple Sclerosis by Ann Boroch.  I am not Ann Boroch, by the way.  She has been symtom-free herself for 15 years now.

Ann

Wow.  I'm surprised.  My doctor wanted me to get a cane and by changin my diet I don't need one.  To me, it's a miracle.

Okay, but different things work for different people.