Last reply 2 months ago
Recurrent UTIs

Hi everyone,

sorry this is my first post in a while, last time I posted I had just found out I was pregnant. Unfortunately we lost our baby at 12 weeks and because having MS isn’t enough of a health issue my pregnancy ended up being a partial molar pregnancy which could have had serious implications for my health. Since this happened I have had recurrent UTI symptoms and I’m starting to get a bit down about them.

Every time I go to the doctor the test strip comes back negative for a UTI but I have pain in my back, an urgency to go (sorry TMI) and a headache and generally feel bad, this is sometimes accompanied by nausea (but this could be the Copaxone I’m on or just MS itself!). The doctor sometimes treats me and sometimes doesn’t. I’m just a bit confused as to why the tests are showing as negative when I know my symptoms are very real.

Has anyone else experienced this?
Thank you,
Maggie

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stumbler
2 months ago

@dinocorn , I’m sorry to hear about your pregnancy. That must have been a tough time for you and your family.

Urinary urgency isn’t just a symptom of a UTI, it could be a sign of urine retention, which can be a common problem with MS. This may be the problem, which can then put pressure on your kidneys, hence the back pain – I assume it’s lower back.

I would suggest you need some incontinence advice or a referral to Urology.

Hope this helps.


mlgilber1
2 months ago

I get these symptoms from time to time as well and it usually comes back negative. I never know if the urgency and pain is a UTI or the urinary retention I get sometimes. My neurologist has referred me to a urologist. I hope you feel better.


mlgilber1
2 months ago

And I’m so sorry for your loss. That must’ve been so hard!


kay_campbell
2 months ago

Hi, I have MS and have suffered chronic utis for many years. MS makes me prone to taking them. So often my results have come back negative too. They should still give you an antibiotic if you have uti symptoms to stop it worsening. I hope you get better soon. Kay x


dinocorn
2 months ago

@stumbler thank you, it was a tough time and we are heartbroken to have lost our baby. We called him Naoise and we have a little angel on our window to keep him in our thoughts. I have back pain that is on the left side mid to low. I will be seeing my neurologist this Thursday so I’ll mention it to him then and see what he says! Oh the glamour of MS… never a dull moment!
@mlgilber thank you, it was a very difficult summer but we are lucky to have two wonderful children and a rather large dog so we are definitely counting our blessings 🙂
@kay_campbell some of the doctors have given me antibiotics but the last doctor gave me opioid pain killers instead which was a little disconcerting as I don’t really want to take strong painkillers.. I’d rather have the cause treated. Thank you so much for replying.


sinead
2 months ago

Hi @dinocorn, so very sorry for your loss 🙁 as if you’re not going through enough already, you poor thing.

Don’t settle for a no with your doctors uti diagnosis, obviously the responsible use of antibiotics is super important these days but a dipstick wont always show up a uti accurately and you’ll need a full bacterial count urine culture to rule it out, especially in the case of an e coli based uti with biofilm development (this makes them especially hard to clear despite repeat antibiotic courses!) I’ve had the same issues for years so done a lot of research on the problem, and recently I’ve been reading on the Barts MS blog that low grade uti’s are one of the main undiagnosed reasons for chronic cytokine release which causes constant worsening of our condition, so despite different gp’s declining your request for antibiotics, its important to treat them as completely as possible and you certainly sound like you have symptoms worth following up!

As an aside, a drug called waterfall d-mannose is useful in breaking down an e-coli biofilm, allowing antibiotics to clear a uti properly, and this can be found online without prescription. I hope that helps and you feel better soon 🙂 x

@dinocord let me start off with my sincerest apologies and so sorry for your loss…I have survived 3 miscarriages, and that loss is one of the hardest to deal with. I have had UTI issues for years…where the initial test comes out negative, but when culture is sent out, it comes out positive. My symptoms at that time: I could hardly walk. The last 2 UTI’s that Ive had, were the normal symptoms. I see a urologist and she has me take an antibiotic daily as a preventative. I also take cranberry pills (8400 mg × 2) daily, and apple cider vinegar (1 tbsp) daily.


leogirl
2 months ago

@dinocorn, I am so sorry for your loss, you have been through so much. I am from Dublin and I have had urinary problems and back pain for the last few years. I attend St Vincents. I was on awaiting list for a urologist for about two years and recently made an appointment in St Vincents private. I don’t get UTI’s thankfully. I have urinary retention and I had an appointment with a nurse yesterday and she showed me how to use a catheter*. I was not looking forward to it but it was fine. It early days yet but it definitely helps. Unfortunately in Ireland one has to go private to get answers. My Gp just put on medication which didn’t help the and the consultant said he might take off the medication if the catheters* work which would be great. I have sent you a friend request and feel free to ask any questions. Ann Marie X

 

* – Spelling mistakes corrected – Admin (Stumbler) 😉


leogirl
2 months ago

@stumbler, thanks I meant to check that, it a new word for me😀


jane_watts
2 months ago

@dinocorn.
I am extremely sorry for you & your family, heartbreaking sadness, such a tough time you’ve all endured, I am so very sorry.

Your symptoms will magnify due to your upset too, you’ve been through alot. Totally agree with Stumbler on his views.
My bladder goes on strike at times, have to run the taps, then other times I’m running to the loo my bladder has such urgency, my back feels as though it’ll break with pain. I’m not on any medication presently, but I was on Copaxone daily injections this treatment got me back up on my feet I was crawling before I began Copaxone never a side effect. That was when I was diagnosed with RRMS on my 40th birthday in 2006 I attend the Bon Secours Renmore Co. Galway. It’s true as Leogirl said in Ireland to get answers we’ve to go private.
I live in Co. Mayo 💜


vixen
2 months ago

Hello @dinocorn, I am truly sorry for your loss and suffering. I love your angel idea, what a wonderful comfort. When you see your neuro, ask for fast track ideas for future UTIs and such issues. What we need is the ability to have a sample of urine checked without booking through systems. Each time I have had a problem, I go to the GP, then return again to see the nurse, then she tests on the spot but always has to send of to hospital if inconclusive. If there is a weekend between, you can go for days untreated. I share your frustrations. @stumbler makes good reference to the point about us not draining our bladders adequately. This can sometimes happen if you are in a rush and try to speed up the process of going to the loo. I hope things resolve soon for you x


potter
2 months ago

I had UTIs one after another and my first test would always come back negative and I would have to wait a few days to take another. I read a interview of a urologist in a MS magazine, he said taking a 1000mg Vit C at night would burn away any bacteria during the night. I started taking a 500mg Vit C every night and didn’t have any more UTI’s. The 1000mg Vit C was to strong for me. The urologist said he didn’t know why every doctor who dealt with UTI patients didn’t suggest the Vit C. Potter


dinocorn
2 months ago

Thank you all so much for the advice… it’s so reassuring to hear advice from people who truly understand. I’ll definitely start the vitamin C!
I went to see my neurologist yesterday and he said that I am doing really well. All of the tests he did were normal and he’s really happy with me.
I asked him about the UTIs and he said that if things don’t settle in the next few weeks he will refer me on to a urologist.
He also said that he is considering changing me from Copaxone to Gilenya if my next scan shows any new lesions… I’m not wholly sold on the idea. I googled it (which I know I shouldn’t have) and some of the side effects don’t sound overly pleasant! My next MRI is in April so I guess we will take it from there!

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