constant feel of need to urinate - MS????

[marriedwbaby]

In August of 2007 the tips of my 2 big toes went numb (sorta like when you get novacaine and you can feel when you touch it, but it feels "funny").  At first I ignored it, but after a few days I went to my internal medicine doctor who said she had no idea what would cause it, but if it wasn't causing me great grief, just let it go.  Then in October, I began having some bladder issues. It started out just feeling like I had to urinate all the time...bad enough that it kept me up at night.  It felt like something was sitting on my bladder.  It only lasted a couple of days out of the month, usually the week before my period.  The next month when it happened again, I went to family practice and was tested for UTI. It was normal.  I made an appt. with GYN, but then symtoms went away again.  I cancelled the appt.  The symptoms came back to I finally went to the GYN in November.  He examined me and said I had 3rd degree prolapsed uterus.  He said that the reason the pressure was worse before my period was b/c of the increased blood flow during that time.  I had a TVH on December 17, 2007.  He also removed my fallopian tubes b/c of previous tubal ligations and reversals, so I had scar tissue on them.  Ovaries were left.  He said it was an uneventful surgery that went perfectly.  Within a week after surgery the pressure started coming back...gradual at first, then right back to the way it was before surgery.  At my 2 week post op visit, I told him about it. He said it was probably just my bladder readjusting.  Within a few days after that, my discomfort was UNBEARABLE and I went to the hospital.  They x-rayed my lower area and told me I was constipated!!  They told me to drink myralax which I did for days and then I kept having BMs. The bladder pressure would ease up somewhat but never went away completely. Within another week, I truly thought i was going to die!!  The pressure had kept me up literally all day and night for 3 consecutive nights.  I knew i wasn't constipated b/c i had been going so much.  I knew something else was wrong.  I went to a urologist who wouldn't touch me b/c i was 3 wks post-op, but told me I had over active bladder or Interstitial cystitis based on my symtoms.  He gave me stratera (Strattera)(?).  The next day I couldn't urinate at all!!!  

Cutting to the chase, I have been hospitalized for the pressure with my GYN literally scratching his head telling me he had no clue!!  They did a CT scan that showed nothing.  No pain medication they gave me gave me any relief.  He sent me to a urologist in Atlanta who told me I had retention based on an u/s showing some urine in my bladder right after emptying.  I came back in a couple of weeks for a cysto and urodynamics (some time in February 2008).  The cysto showed everything looked fine, but the uro showed that my bladder was not contracting.  By this time, the "pressure" had turned into just feeling like I had to urinate all the time, not like something was on my bladder.  I truly had forgotten what it was like to have a normal urination.  I was in complete misery and NOTHING helped.  I could not sleep, eat, and naturally became very depressed.  The doctor gave me flomax and said to see how that went.  The feeling did start easing up, but didn't go away.  Week by week, the feeling eased more and more.  This week (March 26) i can finally say on a scale of 1-10, my discomfort is a one!!  But I received a phone call from my GYN earlier this week, who told me that the urologist in Atlanta thinks I need to see a neurologist for possible MS.

I've done some reading about MS.  I have noticed vision changes over the last several months (even though the optometrist says I have almost 20/20 I still feel like things are not clear, but I cannot say they look blurry..just not clear.  As far as my memory, I do forget things alot, but I have 4 children (2 teenagers, 3 yr old, and 1 yr old).  I chalk that up to just having a "full plate".  I also work a full-time job (which has suffered dramatically since all this began).  I have the depression, but am unsure if it is simply b/c of the pain and sleep deprivation for months (and no doctor being able to help me).  I have been on zoloft now for about 4 weeks.  A week and a half ago, I went to a psychiatrist b/c I was really at the end of my rope b/c of the sleep deprivation.  He gave me remeron and that very night, I slept all night for the first time in all these months!!!

Like I said, I am finally starting to feel "normal" again, but am waiting to hear from the neurologist to schedule my first appointment.  I'm scared.  Are my symptoms going to flare up again?  What do you think about the possibility of MS?

[Heather3418]

Welcome to the MS Forum, first of all.  We are glad that you posted your question and hope that you will find some answers here.

You sure have had alot going on and I feel for you.  You have done all the RIGHT things by seeing your doctor's when symptoms warranted.  You listened to your body.  Good for you girl.

It would be hard to tell, based on what you have told us, if this is MS.  There needs to be alot more testing to rule in or rule out, symptoms from MS.  When you have had a complete Neurological work-up, there will be more information to go on.

Your bladder problems, simply stated, can be just from being a mother and having adhesions in your lower abdomen.  Your prolapsed uterus, if it is tilting forward, can lay on top of your bladder, thus the feeling of needing to empty your bladder all the time.  Your doctors have tried you on the correct medication.

Is there any other symptoms that you have been having that might give us a better clue, as to why your doctor would order a work-up with a Neurologist.  Bladder symptoms CAN be a sign of MS, but of course, can be so many other things.

I hope we can help answer your questions.  Again, welcome.  

Heather  

[CtResident]

Hi! Welcome to the Forum.

Forgive me for not recalling things more efficiently, but some of what you're enduring, I have been through.

Back in the late '90's, I believed I had endometriosis, but gyn's said no, drink wine, relaxxxx. I went to an endo specialist (I live in CT, I flew to Atlanta, by the way!!), who said I had adenomyosis, a form of endo, and I had a partial hysterectomy, keeping the ovaries.

Few years later, I have abdominal pains, I have had this off and on for many years, I called it "bruised bladder".

Dull ache in lower abdomen also starts, is it ovarian cancer? As well as bladder issues. Gyn puts me on Detrol, it helps for only a couple of months. Cost and inefficiency and I stop taking it. Go to gyn-oncologist and explain issues, also see urogyn for bladder questions.

My abdominal pains felt like glass shards in my lower abdomen. As well as the dull ache. So with this team of two specialists, I had surgery. I was told no ovarian cancer, but yes to Interstitial Cystitis. I had to travel one hour each way to have 5 minute bladder instillation treatments for 8 weeks. By week 2 of this, I asked for a local urologist to get through this.treatment procedure. My husband was taking time off from work to drive me on the long trips. He never once complained, but it was a bit much!!

The new uro dr. told me to do an intake/voiding diary, which the specialist had not done at all, that that was what was a first step, that IC is a diagnosis of last resort!!! I do drink tea, and thought aha! It was all of the tea! (My tea is so weak it barely deserves to be called tea!) But the IC diagnosis dropped off the radar, I never had the other 6 treatments!

I now wonder, with 20/20 clarity, if the bladder issues were MS related? I haven't had a single urgency or multi-trip-in-the-middle-of-the-night in well over a year!!

I did have some bladder pain (the glass shards pain!) again once last week. Cue in spooky music!

Well, enough about me. You have been through so very much and I just want to say it sounds familiar.

Keep reading here. There are Health Pages specific to MS at the upper right portion of the page. Research away, but any questions you have, someone eventually will come along and help you out.

Suzanne

[biowham]

Your urol wanted you to have the MS eval b/c of the bladder empyting problems, which signifies some issues with innervation and contraction of the muscles of the bladder, over which you have no voluntary control. Normally, these smooth muscle contractions are supposed to be triggered to contract on their own with filling and to continue the contraction through to empyting. Sometimes, a presenting symptom with MS is bladder problems (frequent UTIs, etc.). I'm surprised that with your emptying problems, you never tested + for a UTI.

Anyway, with the extreme and persistent discomfort you were having and bladder emptying difficulties, the urol obviously suspects some bladder innervation issues, and one possible etiology is MS.

I'd wait for results of an MRI and blood workup and then see what they say. And be sure to request a brain and whole spine MS protocol MRI...all of the spine--cerivical, thoracic, lumbar. These results may help make some distinctions among the possible etiologies for these apparent bladder innervation problems (tethered cord, t-spine compression, MS, etc.).

Bio

[Fluffysmom]

I also have the frequency and abdominal pain issues, though not as bad of pain as yours, Suzanne.  After years of totally incompetent care, I was finally diagnosed with  IC several years ago.  I also got worse around my period and if I was constipated, but other times it seemed like I always had to go no matter what I did (IC diet, no artificial sweetner or carbonated beverages, caffeine, etc).

Now I've had tremors, a brain MRI with lesions, and joined the Limbo-landers (undiagnosed), and I wonder if MS had caused some of my bladder issues.  My urologist wasn't real helpful.  I see a neurologist on April 8.

I wish you relief and peace, marriedwbaby, and the answers you need.

Kathy