New, questions and need support

[3boyzmom]

I feel like I'm all alone and don't want to discuss my issues any further with friends or family as they just don't understand the state I'm in right now.  My situation is very perplexing and I hope to get closer to some answers in a week.  My post will probably be rambling as that is where my mind is right now, but if anyone has any insight, wisdom, thoughts I'd truly appreciate it.

This all started 2 months ago.  I had a hysterectomy and bladder sling done.  After the surgery I couldn't go to the bathroom.  This went on for a month and I was referred to a Urologist as that was not normal for the surgery I had.  I had Urodynamics done and it showed I had a Neurogenic bladder.   Everything is off.  Oh, they also did a cystoscopy which ruled out obstruction from surgery or anatomical issues causing my problems.  At this point the Urologist said he felt I probably have had this problem for quite some time, and when they did the bladder sling I don't have the muscle strength since everything is in place now.  Since it was now muscle related I was referred back to my PCP.  

I had a Lumbar MRI last week, and it ruled out Spinal Stenosis and Cord compression.  I am now set up for an appointment with a Neurologist who specializes in Muscle Disorders and MS.  That appointment is in a week.

I probably wouldn't even have thought of MS until two friends who are Dr's asked me if that is what they thought was going on.   After researching, this is begining to make some sense when I look back on things that I associated with other issues.  A few months ago one of my eyes was horribly painful all day long, I can't even explain the pain I had, but chalked it up to my contacts.  I have been so fatigued, but chalked it up to the various hormones we used to try and control my Endo, and I've had tingling/numbness in my feet and hands.  But it never stayed for more than a day or two, so I didn't see it as an issue.  I've had real concerns about my memory, I can't tell you how many times I start talking and stop and say I lost my train of thought, or can't recall a word that fits into my discussion, or I'm going to do something around my house and forget what I'm going to do.   Now, I'm really starting to realize I'm having some real issues as I'm becoming dependent on laxatives because I don't have the strength, this has now been going on a month.  It is all coming together.  It is as if I try and go to the bathroom, I can strain and nothing works in that area (unless my stress gets to me and we all know what happens).  I can feel, but I don't have the strength.  I want to add, I also have a family member with MS.

Has anyone had bladder issues as their presenting symptom?  I guess it may have been the surgery put my body in overload even though it wasn't the surgery that caused it.

My appointment is August 27th.  What can I expect at this appointment?

Thanks for any insight and allowing me to post.  I have such high anxiety at the moment and I hope to find a forum to post while I'm in this limbo.  This looks like a very cohesive and supportive group.

[3boyzmom]

Thank you all so much for your insight.  Quix, your response has helped me immensely.  

To answer some of your questions,  I just turned 40 a few months ago.  My Aunt on my mothers side has MS and was dx'd at age 47, her initial symptom was her hearing.  

I'm am getting scared as so many things are starting to make sense. I am getting clumsy, I'm standing and lose my balance, my response is "really I haven't been drinking".  Twice in the past two months, I've hurt my toes on door jams, once I thought it was broken.  I can't forget that one as it was Fourth of July.  I know this is not normal and it is strange that it happened today, I was eating and reading a magazine and I must have been bending my neck and got that zap on the side.  What is that related to?

I'm now starting to wonder if all the issues were there, but the endo pain, and **** associated with it, diverted my attention.  However, I'm so new to reading about this I'm not even sure how all this is supposed to present.  The fatigue has been going on for awhile (I have periods that are not so bad, but I shouldn't be as tired and spent as I am these days), I've truly wondered what my problem has been.  I continually chalked it up to hormones we had tried so never said anything.  I'm not sure at that time I would have been taken seriously.

The doctor needs to see/hear the difference between what you were (smart, energetic, hard-working, active, multi-tasker - whatever) and what has suddenly happened to you.  This did used to be me, I still try, but can tell I've slowed down.   I had a scary episode yesterday that even my dh is aware of now.  I was making some eggs for my kids, went in another room and forgot I had been doing that.  It suddenly dawned on me and I realized it right before they would have burst, but scary nonetheless.  I'm very into writing lists and writing down important dates and tasks so I don't forget.  I was one of those people with a photographic memory.

This has all come on so suddenly.  Well probably not, but the path I'm leading now.  My surgery was 06/12, I was sent to the Urologist in early July.  I rec'd the I think it is nerve/muscle related on 07/31 and sent off to my PCP to schedule an MRI and Neuro appt.  Met with PCP he ordered the Lumbar MRI to rule out intial issues prior to issues Neuro would look into.  The Urologist and PCP have not said I think it is XXX.  It is the first thing my two Dr's friends asked me if that is what they thought it was.

I am under the assumption after the Neuro appt, I will be looking at another whole host of tests etc.  This limbo land has sent my anxiety through the roof.  I just want some answers, but I am lucky that the situation that presented has fast forwarded me through some of the red tape people get stuck in.    I'm also lucky the only referral needed with my insurance is for impatient hospitalization, so all testing and referrals are not a problem.

The thing about friends, they mean well.  Some friends have been on this roller coaster with me the past two months.  I'm just tired of the it is probably nothing, don't worry.  I'd like to believe that, but I've come to learn a Neurogenic bladder is something serious.  Speaking of Neurogenic, the dx was external destrusor dyssenergia.  Though over the past two weeks, it has come full circle and I've had all issues.  The bowel issues set in about 4 weeks ago.  Due to the bladder issues I've had 3 infections in the past 7 weeks.

Again, I know this is rambling but wanted to answer a few questions and give a little more insight.   I will go look at the Timeline 101.

Thank you so much, I truly appreciate the responses and support, I plan to return it and stay around.

[Quixotic1]

Hey, I know the feeling!  When you get to know us better we'll need a better name, but this one is like quite appropo for now.  We also have a "slow" and a "scarey" so you're in good company.  Welcome to the niche we've carved out of diagnostic "Limbo Land."  You even tumbled onto our fravorite nickname for the site.  I am the local medical "expert", a retired/disabled pediatrician with vertigo and newly diagnosed MS.  We make about three dozen people here, made up of the Undiagnosed, the Misdiagnosed, and the Diagnosed, but Pissed Off.  Also a large number of us have had our doc's tell us that our problems are all in our head, due to advanced age (30-60), feigned, hormonal, imagined, or just not really a problem.  At least it sounds like your doc's are paying attention to you.

So, to start out decidedly non-PC, how old are you?  It sounds like you've really been through the ringer.  And since you've landed on an MS site, I'll discuss what you've told us in the "context of MS" even though you know no one can really diagnose anything online.

To answer your main question, yes acute urinary retention can be the presenting symptom in MS.  It certainly isn't one of the commonest, but any site that has nerves can be the first.  Urinary problems were my second symptom.  I'm 55 and had my total abdominal hysterectomy when I was 41.  My first symptom was when I was 52, suddden weakness in my R hip flexors.   The second symptom was a few months later and it was urinary urge incontinence.  I totally understand your description of there just not being any thing there to push with, both with urine and bowels.  I have urinary retention also, my bladder routinely hold 22 oz, but right now I am still able to empty it enough.  But I really have to work at it (boring...!).  The bowel thing I also have.  I recommend along witht the laxatives that you take a stool softener like docusate sodium (Colace - but use the generic, just as good much less $$) start with about 200mg a day and work up until it is soft enough for the laxative to be effective.  I use 200 to 400mg per day.

Somewhere along the line the fatigue set in also.  It's a bone crushing fatigue, and I doubt that the hormones for endo (BCP's?, Lupron?) would cause a fatigue this severe.  I was already fatigued from chronic vertigo, but suddenly slowed down so much, they are considering reclassifying me as a statue.

The episode of eye pain may have been a mild and brief Optic Neuritis (ON), which would be THE classic, presenting symptom of MS.  When you read about the description of ON you'll see that it typically lasts several days to a few weeks.  But we also know that many people with MS will test positive on the Visual Evoked Potential (VEP) as having had ON, but never had symptoms.  So of course having brief syptoms would fall somewhere into that spectrum.  If your MRI's are not diagnostic, a VEP is one of the next tests you should have.  It's like a brief little EEG.

Many people actually present with the cognitive problems and the fatigue and are immediately labeled as depressed, thus delaying their diagnosis until something a little more dramatic and obvious happens - like temporary blindness from ON or paralysis - those will usually get the doctors' attention.  Word recall and short term memory difficulties are right up there as are difficulty with multi-tasking, spatial analysis, and problems with the "here-after."  That's where you come into another room and can't remember what you're here after.  So many people put these difficulties off to aging, but, in reality, they are far worse than the mental sluggishness of age or menopause (mentalpause).

It does sound like many  things may have been creeping up on you as you struggled with the endometriosis.  The fact that the things like the eye pain and the tingling in your hands only lasted a day or two is a little unusual for MS.  Under the current diagnosis guidelines, the symptoms must last at least 24 hours, some neuro's insist on a minimum of 48 hours.  Typically attacks or relapses last a little longer, but the normal thing for MS is that it is totally variable in every person.

I'm glad you're headed right off to see a neurologist - and one that specializes as he/she does.  I hope you find him attentive, openminded, and thorough.  Did your PCP do any basic neuro exam?  Do you know if your reflexes are normal?  Have you noticed any problems with balance, clumsiness, stumbling, reaching for things and missing, or missing doorways and walking into the doorjams.  I stagger and lurch about like a drunken sailor.  Apparently my body considered "doorways" just a suggestion - walls and furniture are there to keep me on the path, rather like a pinball.

Your first neurology visit is an important one.  The doctor needs to see/hear the difference between what you were (smart, energetic, hard-working, active, multi-tasker - whatever) and what has suddenly happened to you.  I'm glad you have friends that are doc's.  You'll be as comfortable as possible for anyone facing diagnoses they don't want.  His history should be thorough.  You should have a timeline, which in your case probably won't be too long, of things that have happened to you, but you probably shrugged off as "weird, but one of those things."  For instance, when I was making my timeline I remembered a couple week period where I kept having the sensation of warm water running down my inner thigh.  It was right during the time when the incontinence was occuring and I kept grabbling myself to check, but everything was dry.

The neurologist will already know something is terribly wrong with you having a neurogenic bladder. What that means is that some of the nerves that make the bladder work right are damaged.  In the kind you have the most common cause is a peripheral neuropathy, but it can be central also, could be a failure of the great muscle in the bladder wall to contract or a failure of the sphincter to relax or both.  He will likely order an MRI of the Brain and MRI's of the C-spine and T-spine, to look for lesions in the white matter (the communication network) of the CNS (Central Nervous System).  The Lumbar image would have shown the peripheral nerves as they left between the vertebra, but it wouldn't show the spinal cord.  The spinal cord itself ENDS right at the bottom of the thoracic spine.

The other thing the neuro might order is a bunch of blood tests to look for other things that cause white matter or muscular disease.  In diagnosing MS one of the requirements is that there is NO BETYTER explanation for the symptoms and physical problems.  Given the history of eye pain he might also order the VEP.  It is unlikely he will be able to give you a firm diagnosis without seeing the MRI's.  He might give you a guess, but be prepared not to have a firm idea when you leave the office.

It is certainly possible that the major physical stress of surgery kicked something off.  Or, you've been brewing something for a while and finally a symptom was big enough to grab your attention away from the pain of the Endo.

Have you noticed any problems with the heat, hot showers, getting overheated?

Well, welcome again.  I hope I helped answer a few questions.  I'll be looking for some answers from you.  We'll have you all ready for the appointment!  Quix

[Nanners123]

You've found a great spot to learn about Sx of MS and the difficulty in getting a proper diagnosis whatever that may be. I too suffer from some of the same sx you describe absent the severe bladder problems.

There is a post several pages back titled something to the effect of Timeline 101. I think it would be a great idea to look over that thread as well as several others before your appointment. Taking a good amount of time to go over this forum as well as this website:

http://www.mult-sclerosis.org/diagnosingms.html  search this entire site for great information about MS. Our resident expert Quix suggested this and it has a wealth of info.

Keep reading and make a timeline and hopefully you will be ready for your appointment. Let us all know how it goes.

Nancy

[karzme]

I also have bladder probs too. Mine is trouble controlling it sometimes. Was put on oxybutinin fo it. Sometimes I feel like I have to go, but nothing comes. other times I still feel like I need to go after I just went. Is very confusing. I would say you have MS too.

What to expect: Lots of questions about your symptoms and family history. You do a walking test for ballance coordination. They show you and explain your MRI to you. Would recommend taking someone with you if you can. Support is always good. Atleast to first apt. They might suggest other tests, like bloodwork or something to help narrow it down, if they aren't sure.

I was diagnose dwith just my MRI's. Nothing else needed. Have quite a few lesions. I hope this helps you.     Karina

[3boyzmom]

I can't tell if you can edit, but wanted to add, I had an EMG test and it shows my bladder is Neurogenic.