BACKGROUND: I’m 26 years old and finally got diagnosed after eight years of symptoms and tests. My last MRI lasted for two hours, which was heaps of fun! 
In February my consultant decided that he wanted me to try steroid IV treatment for three days because I was having quite a hefty relapse and my right side was getting quite weak. The day I finished I had an excruciating pain in my hips so I was taken in to hospital for a week so they could keep an eye out and so that my consultant could do a variety of tests as a process of elimination for diagnosis, as my MRIs only show that I have inflammation in my spinal cord. He confirmed MS in May. He told me he was going to refer me to the MS Nurses as I began having bladder problems, but there has been a little trouble here and, as yet, I have not seen anyone. THE PROBLEM: Since around February I have been having problems with bladder infections. Numerous doses of varied antibiotics helped, and then they just stopped helping. I’ve had this particular infection for two months non stop now, although it gets better and worse. My main issue is that I’m often struggling to force my urine out. If I’m desperate, I get a good flow, but at the end I struggle. There was a time where I could only sleep with a hot water bottle between my legs but I have ended up scarring my inner thighs with burn marks so I’ve had to stop that. I went to see my GP yesterday who said that she thinks it’s cystitis, it’s definitely being caused because of my MS and she wanted to try me on a tablet that, in larger doses, is used as an anti depressant, but it can be used for neurological problems too. It’s called Amitriptyline. I’ve been using it for three nights now and I still have the horrible fuzzy pain across my bladder and urethra and I’m struggling even more to get my wee out!! She stopped my one antibiotic a night as well. I’m currently waiting on a call back so I can tell her. I’m drinking cranberry juice every day and trying to drink plenty of fluids. Does anyone have any other advise perhaps? Anyone on an incredible pill that made it go away? Thank you and sorry for the essay! Elle xx
I think there’s two things here Elle. One is clearing the infectiuon the second is ensuring your urinating enough and passing any bacetria out.
You’re doing all the right things. Heat, cranberry and fluids. You can also try cranberry tablets from the health shop or stimulating your bladder more by applying some pressure with the palm of your hand to encourage it to empty engage and empty fully.
Has your GP or neuro thought about referring you to Urology? It might be something to consider. I’d chase up seeing the MS nurse also if you haven’t done so already.
Good luck. I’ve had afew bad urine infections in the past. Really not pleasant.
Reemz
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Thanks Reemz. In fact I’ve been pressing my bladder to encourage it to empty and it does help a little but I can’t seem to always empty it fully whatever I do. My GP called at about 12 and said to stop the tablets that she gave me since they are making me worse and she’s going t refer me back to a consultant, although I’m not sure if she meant Neurologist or Urologist. For the last month or so the pain has continued even though they can no longer find any cultures in my urine, so she thinks it’s a form of Cystitis. Obviously, I’ve googled it, haha, and I think the only Cystitis relevant is Interstitial Cystitis, which I noticed that other MS patients also seem to get. Anyone know anything about this? Could it be this or should I just label it an MS flare up? Xx
I was prescribed Potassium citrate which I think is supposed to help by changing the Ph of the urine to make it less friendly to microbes. Maybe the bladder wall itself is still inflamed eventhough the bugs may have left the scene. They can see the red patches denoting inflamation with a cystoscopy examination by putting a camera up the pee hole. Very tiny at the end of a flexible tube so wont make your eyes water.
Sounds LOVELY! :S Ouch… the idea of something going up my pee hole makes me shudder!
Oh No - makes me cringe too Elle!
Hope you manage to get seen soon. I’ve only had mild on/off bladder issues where I know I’m not emptying fully and it’s really uncomfy but thankfully no infections and bath of hot water really helps me it’s like someones opened a tap - though it buggers my other symptoms!
Reemz
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