Bladder problems, now 13 years later....

[tj3762]

Hi all, It has been a while since I have posted.  I hope everyone is doing well.

My question is this....  Back in 2003 is when all my problems started.  Now 13 years later, I still have no "official diagnosis of MS" but I am being treated by my neurologist, Pain Management and other physicians for my symptoms and pain, excluding any MS drugs.

Recently, over the past few months, I have been noticing so many problems with my bladder function, i.e. losing urine at night when asleep, getting up out of bed, frequent voiding, erratic urinary stream, feeling of fullness all the time, etc.  I am using pads now to protect my under clothing as well.

I went to my GYN the other day because I thought maybe I had a bladder prolapse or something, but she said everything was fine and she thinks it is related to my MS (detrusor muscle), and she is sending me to a GYN/urologist for testing.  She was also going to forward her records to my PMD and my neurologist as well.

My question is, with these bladder problems, could I be getting closer to my MS diagnosis now 13 years later?  I have always been concerned and also persistent in finding my diagnosis, afraid that without MS drug treatment, I would worsen.

I would appreciate any feedback anyone might have to help me.  

Thanks, Terri

[tj3762]

Sorry to hear you are having similar symptoms.  I, too, wonder how the autonomic dysfunction is related.  Docs seem to pay more attention to somatosensory symptoms, unfortunately.

Mostly over the past few years, I just decided to deal with it and move on.  It is hard to do though when years after we continue to develop more symptoms and lasting effects of the disease.  

Please take care and thanks for your response....

terri

[dogmum]

I also have some autonomic symptoms as well. I wonder if they're somehow connected.

[dogmum]

I started having bladder problems in 200/2001. Today I use catheters and protection and while I was diagnosed a few yers ago by a specialist far away, but my locals still say not enough evidence.. 16 years later. I had optic neuritis and double vision in 2011 and trigeminal neuralgia in 2012. Lhermittes, spasms in my legs, numb left hand, and on and on and on. I, too, had hoped to be on a dmt by now or if it's not MS, would like to know what it IS.  Unfortunately, MS is no longer a diagnosis of exclusion, it would seem, but rather a very long list of boxes that must be ticked. Good luck to you!

[tj3762]

Thanks so much for your response and I appreciate it greatly.

I am so sorry as well to hear that you have endured this pain and problems over so many years.  Being in Limboland can be very difficulty, especially when new symptoms arise year after year with no clear findings in the head or spine on MRI of scarring.

I last had a 1.5 MRI about 2 1/2 years ago.  This was after about a 2 to 3 month prolonged episode of not being able to use my arms very well including numbness and pain, inability to lift my arms, etc.  It scared me really bad at that time as I thought it would be permanent.  It went about in that amount of time, but fortunately I was still able to transcribe for my job during it.

After this MRI came back AGAIN with no findings except for something in my sphenoid sinus and something else that I cannot remember (insignificant finding), I decided the next MRI is going to be the 3T.  Strange is that my local hospitals do not have it, but a rural hospital in Salem, OH has the 3T.  I am sure Cleveland Clinic has one now that I could go to or University Hospitals.

I will definitely pay the money to get the 3T though.  I have a deductible to pay first, but at least I can get a discount with my insurance.

I go to the GYN urologist on April 11th to see what he thinks of my bladder problems.  Surprisingly, it has got a little better, so I am wondering if it was an exacerbation OR relapse type thing with my bladder.

I have truly worried over the past many years about getting a diagnosis because my neurologists will not treat with disease-modifying drugs without a diagnosis unfortunately.  I have continually gotten worse over the past few years with new things including going to see an endocrinologist a few years ago because I started developing these hot and cold episodes and like a red facial flush that was always every few minutes.  I was worried about developing lupus on top of MS at that time.  I found out by research that the hot and cold sensations are due to autonomic dysfunction.  I continue to be puzzled about all of this.

I have been very thankful that my neurologist did give me Toradol shots about 2 years ago, which helps my severe migraines, which too sent me to the Emergency Department.

I was wondering what your latest symptoms were that caused your worry about getting continually worse of late?  Are you getting a 3T soon as well?

Thanks, I look forward to hearing back from you....

P.S.  When I first found MedHelp site way back in 2003 or 2004, I was told by one very nice lady that she was not diagnosed until 13 years after her problems started.  I have always kept that in the back of my mind when some say if you still have no lesions, then it is probably not MS....

[immisceo]

Clinical evidence is expected over time. When objective evidence is absent over time, it is correct to say that MS is not probable. That's not to say there are not exceptions, just that they are in the minority. The anecdotes of others do not alter this fact.

[suspiciouscombo]

I concur with Alex on this one and some of the questions she addressed. With specificity, and considering the sx you provided past and present, has your neurologist mentioned the thought of a 3T magnet? Have you only had your MRIs performed on a 1.5T? I am unclear on this part of the post.

Further, your post caught my attention as I'm in a similar position as you in that I have endured nearly 9 years of various episodes and sx while executing a plethora of tests including repeated MRIs yet nothing. This with each episode being more severe than previous. Since 2006, I've been investigating this with various neurologists. Since 2013, I've seen three neurologists, two being MS Specialists. All have ordered MRI's of brain, spinal, and thoracic w/ and w/o contrast on a 1.5T magnet. All neurologists have ordered bulks of blood work and I had an LP in 2013. EVP, nerve conduction studies and the list is infinite......... all declared normal.

No findings reported to explain neurological complaints. That said, in the last few months my sx have worsened dramatically. Enough to affect my occupation and academic standings. As a result, and after having MRIs repeated, on a 1.5T in September 2015 and with the radiologist report paired with two MS specialists review, they don't see anything of neurological concern. The first MS specialist did note my pituitary gland seemed enlarged in which I'm scheduled to see an Endocrinologist in April to discuss.

However, over last 3-4 months, I've developed very strange new sx in which landed me in the ER. Both ER physicians plus my GYN believe this is all Neurological related and have directed me back to the MS specialist.

As such, this past Monday I sat with my MS Specialist to discuss.  After providing past and presently new sx, and after a normal neuro examination, he suggested we repeat the MRI of Brain, Spinal, and Thoracic on a 3T magnet w/ & w/o contrast with maximum sensitivity & time. He also ordered more blood work now pending. This was suggested by him before I even addressed my desire to repeat the MRIs.

Honestly, I do not know or can confirm either way if repeating these MRIs on a different magnet with show anything. I do know the software over the last 5-6 years for these machines has improved tremendously.

I'm only bringing this up as you mention no findings for a MS dx spanning beyond a decade. Yet the Neurologist stated for the record, "Benign MS". Though I understand what that term entails, it baffles me in the same context as the "glass is half empty or half full" notion.

Or with the way my brain is wired, you cannot simply "unmoot" a formally declared "moot" case! To me, even mentioning the two letters, "MS" defines something however wide that spectrum may present.  

My sincere sorrow for your position right now as I understand the daily challenges with no conclusive answers. But as a very wise person on this forum stated perfectly to me, "there are no good answers". Factually conveying, this is especially true for those in Limbo Land.

Regardless .... I do hope and pray that answers will be forthcoming for you or at the very least, a path navigating you down the best investigative course for your case.

Hugs.
SCombo

[tj3762]

My first neurologist told me I had "Benign MS."  Even though I still have no DX, I have continued to progressively get worse with new symptoms over the past several years.  Not only the bladder problems of late, 2 years ago I started with autonomic dysfunction of being hot and cold, red hot flushing from my face, neck and chest, dry face and eyes, and the Raynaud's phenomenon.

Thankfully, my neurologists and Pain Management have treated me with about every medication from gabapentin, Elavil, Dilaudid, Toradol shots for severe migraines, etc.  About the only thing that I am not on is disease modifying drugs for MS.

Several of my docs have said that I could now have multiple autoimmune diseases including my low thyroid.

Thanks for the input.  I hope some day to have an answer.....

[supermum_ms]

Hi TJ,

Unfortunately it's too hard to speculate if your current bladder issues are going to get you closer to a dx of MS or not.

If you did have MS, an over active or unstable detrusor muscle would likely be one of the common issues caused by spinal cord lesions, usually called an 'over active bladder' when it's associated with a known condition like MS but if there isn't a known primary condition, the same bladder issues would usually be called 'over active bladder syndrome' because it can be idiopathic.

i'm thinking if you're still coming up with out brain and spinal cord lesions on your MRI's after all these years, you'd have to have some evidence of lesion damage ie neurologically abnormal clinical signs, abnormal VEP, LP etc for MS to still be on your list of possible causes, i'm thinking even if your urological testing is consistent, it still might be doubtful that MS would be the answer, when MS isn't the only explanation.

Food for thought.......JJ