I have had many problems in the bowel and bladder department and suffer miserably when a UTI is present or constipation. I explained my symptoms to the urologist and he said that what I was describing was that of Autonomic Dysreflexia and he didnt think people with MS suffered with this. I queried with the MS nurse who said she didnt know of anyone who had this as its associated with spinal injuries.As MS can cause problems with the signals in the spinal chord, surely its possible for this to happen. I am confused as its quite scary when its happening and I dont feel I am being taken seriously. Does anyone else have or experienced AD?
Bouncy321,
First of all I’ve never suffered from AD thankfully so can’t help as far as that is concerned. I really feel for you, it sounds awful. One of the things that was drummed into me when I was first diagnosed was not to blame everything on MS even though it’s a sneaky beast. As your MS Nurse and your Urologist agree on the “not MS” I suggest you see your urologist again for treatment suggestions.
I, and I’m sure the rest of your pals on the forum, wish you all the very best.
Tippy x
Hi Bouncy,
It’s not a symptom I have heard of in my time; but here are a few articles about it on the MS Encyclopaedia.
George
The urologist has written to my neurologist stating I am presenting these symptoms so hopefully more investigations to be done. The dr prescribed more meds to reduce blood pressure and the difference is amazing. Definatly something going on with the high blood pressure/bladder and bowels.
Ask your Neuro about APS, APS Support UK | APS - antiphospholipid syndrome
Remember - it is NOT necessary to have all the symptoms to be diagnosed with APS.
George
I now have the urologist, continence advisor and MS consultant who agree with the fact I am displaying Autonomic Dysreflexia symptoms, although rare it is possible. Now I need to find out how to keep it under control, but at least everyone is listening now and its not my imagination.
Hi Bouncy, I’m following this topic with great interest as I too have had many problems the same or alike to those of Autonomic Dysflexia.
In 1962 I had acute appendicitis, in 1971 & 1977 I gave natural birth to each of my 2 children, 1992 I had a hysterectomy, in 2009 I had a bladder sling fitted which stopped bladder incontinence for a while. In Feb 2011 diagnosis of MS, later specified as PPMS. Double incontinence came back.
Earlier this year l had a Supra Pubic Catheter fitted but far too much debris -& blockages delayed recovery, plus dangerously high blood pressure. I think some of my removed body parts and add ons are causing various setbacks.
Last week I stumbled, fell off balance and broke my left ankle! (It never rains eh).
At last a district nurse told me something is clearly wrong with the SPC. When she changes the catheter, every 4 weeks, I literally squeal in awful pain from encrustation of catheter attaching to my bladder wall. I try to take deep breaths to relax but the 5-10 minutes of pure agony seems like hours of unbearable pain. My D.N spoke to my Consultant & aired her concerns.
Consultant has arranged daily Saline wash outs this week & now changed from Saline only to Saline & citric acid to dissolve the encrustation & debris in and around the catheter .
Consultant is also admitting me for a Gen.Anaesthetic for 300ml Botox (my 2nd time) next week.
I initially begged my Consultant to allow the SPC Site to heal but she believes trying the citric acid first and if it fails, then she will try to resite the SPC.
I truly wish you good progress with this horrid situation. My poor cognition is invisible to most & whatever professionals verbally advise, I’ve forgotten as soon as I leave their room.
Sorry for the very long post, maybe you can understand my frustration of Wait and See as it appears you’ve already been here.
Thanks for reading so much of my post, it’s actually helped just writing it down. Many thanks, I look forward to others suggestions too.