problems with urination?

[Sleepy In Seattle]

What you need is a good Genetic Engineer to splice you together a hybrid of a Neuro-Uro-Gyne-Rhumetologist....


(Just thought you could use a little humor...I am so sorry you're suffering!!! Haveing been through 20 years of urinary symptoms and infections, I know how UTTERLY miserable and desperate it can make you.  )

Hope you get some relief VERY soon....

[Tivia]

I have the other problem, I cant tell when I have to go really till my bladder is huge. Its like there is some sensory nerve damage there or something, and the way I tell is pressure on other organs

[Friedbrain]

Ha, SiS, that would be awesome!   

No, Tivia, that's what I mean, and this is a completely new problem for me, not feeling that my bladder is full until I feel some pressure.  No bladder pain in my abdomen as it fills, and no feeling when I urinate.  "Reflex neurogenic bladder" sounds like a fit because both my sensory and motor neurons seem to be affected now.  I have experienced both motor (varying difficulties with initiating, slow/narrowed stream, and incomplete voiding requiring straining and weird positioning to try to finish) and now sensory issues, and I would think there must be an explanation that fits both (and, if so, I kinda would like to stop the progression before it gets to the point of incontinence!):

http://www.spinabifidasupport.com/neuroblddr.htm     "The reflex neurogenic bladder occurs when both sensory and motor bladder pathways in the spinal cord are interrupted above the sacral segments. Bladder sensation is absent in the presence of lesions above the lower thoracic cord. The detrusor shows uninhibited contractions and the external sphincter may relax either in a physiological fashion, leading to incontinence, or it may relax incompletely and produce bladder-external sphincter dyssynergia. This leads to increased residual urine, which then increases the risk of infection and eventually brings about upper urinary tract deterioration. Multiple sclerosis and spinal cord trauma are the most common disorders associated with this form of bladder dysfunction."

[Tivia]

Oh god its always something isnt it...

I am at the point that I will just suffer in silence from now on , its pretty bad when the nurses at the clinic go...you should just get a job here already since you are here all the time  Why does this darn disease have to be so hard to see, I mean if it presented with some major visual symptom then the docs would go...ahhh thats sjogrens ! But as it is its a great deceiver and makes most sjs patients look like hypochondriacs  

[Friedbrain]

Tivia, it's true!  I was feeling nuts myself this week because my symptoms were changing almost daily (worsening, then some getting better, some not..).   I keep a calendar or I'd never be able to keep them straight.  And then trying to explain them to three different doctors......no way to keep it short or probably make sense.

When I had the neuro problems 10ys ago, my cranial nerve palsies waxed and waned in significance over the month I was so very sick (6th the entire time, III and IV varying in intensity and even from eye to eye, and other CNS problems), and even subtly for several months after the high dose steroids mostly resolved them.  For that reason, my dh was convinced I'd picked up some exotic virus from an international conference I'd attended right before.....he pictured this virus jumping around in my brain, since the symptoms kept changing and didn't fit a single constant explanation.  I'm sure I sound like I'm making it up when I try to explain this to new doctors, but I have all the records in a binder to prove I'm not crazy!!! 

My young uro said he thinks cortef would be "off label" if I chose to take it but said I could go back up to my previous dose if I wanted to, and then meet with him about further testing.  My young neuro said to not take the extra steroids and see him on Friday; if I experience incontinence or can't go at all, call (er yeah lol).  <sigh>

(Oh, and I have a PhD in a medical sciences field, which is why I come up with hypotheses about what's going on based on 10ys knowledge of my health, and then want to discuss them; since they don't have my health history memorized, it gets complicated trying to explain)

[gurs]

I also think there is a strong neuro component to all this. In all honesty, I think the Sjogrens neuro issues like MS, can be quite severe and to me ,pretty much the same, and often think that many people diagnosed with MS, might in fact, have Sjogrens. There are many articles on this too. I think they have no clue on how severe Sjogrens can be. My neuro issues have left me bedridden for the last 6 years and all my symptoms mimic MS, but, I know I dont have MS?

I hope you & I and others can find some relief. My bladder hurts so bad.....Im guess if I get Rituxan in the next few weeks and it seems to help, I will know what the root cause is..

Gursie

[shellthebell]

Friedbrain, MS was what my doctors suspected in the beginning but they never found any evidence aside from some O-bands in my spinal fluid (which sjogren's can cause too). Then recently they even suspected ALS.  Anyway there is an article on Medlink titled Sjogren's syndrome: neurological complications. And lo and behold one of the first things is mentions is the MS and Sjogren's similarities, and at the end an ALS similarity is mentioned as well. I would think it is safe to say that with any neurological complication sjogren's should be considered as a possible cause.

http://www.medlink.com/medlinkcontent.asp

If this link doesn't go directly to it you can type the title in search and it will bring it up.