WATCH OUT FOR UTIs: Just recently I had... - My MSAA Community

My MSAA Community

8,920 members20,602 posts

WATCH OUT FOR UTIs

Sukie427 profile image
26 Replies

Just recently I had one of the worst episodes I have ever had, and I thought that it must be a relapse. My legs were so painful I could barely move them let alone walk on them; without a walker I was falling all over the place. The fatigue was awful, the all-over body pain was miserable, I had no energy and on some days I could barely liftt my head. I was constantly nauseous, my eyes got blurry and worst of all, nothing helped. I thought for sure that I was having a bad relapse, but the MRIs showed no new or enhancing lesions (thank goodness). When I went to the neurologist, he asked me if I had had a urinary tract infection. Surprised, I said that I had had my usual blood tests and urinalysis done in March, and my PCP had called and said that I had a UTI and that I needed to be treated. I told her that I had no symptoms and was already on a strong antibiotic from my fall into the mesquite bush and resulting puncture wound which had required surgery. The neuro then informed me that nothing will knock out a MS patient faster or harder than a UTI. I should have known because my dad had Parkinson's and every time that he got a UTI he ended up in the hospital, but he had dementia. This episode has been one of the longest lasting ones I have ever had. My legs still hurt, my balance is still bad enough to warrant the use of a walker, and I am still falling a lot. However, I have been able to start exercising again and going to the therapy pool and riding my horse every morning. However, I am starting on a regimen of taking cranberry and other probiotic supplements and doing whatever Ii can to avoid any more UTIs. This is one of the longest recovery periods I have ever had--worse than some of the relapses. Another thing to be aware of.

Written by
Sukie427 profile image
Sukie427
To view profiles and participate in discussions please or .
Read more about...
26 Replies
RoseySawyer profile image
RoseySawyer

I'm sorry you had to experience that. My Neuro had told me after I had gotten out the hospital that UTI's are not good for me because it will trigger symptoms/relapse.

Sukie427 profile image
Sukie427 in reply to RoseySawyer

Thanks, Rosie. I wish someone had told me that.

jimeka profile image
jimeka

Oh Suki whatever next? You really are having a bad run of things but I am so pleased that you are back able to ride again. You are one strong lady. I think ms has met its match with you. Take care, and thanks for the warning, blessings Jimeka 🤗 🦋 🍫

Sukie427 profile image
Sukie427 in reply to jimeka

Jimeka, my dear friend, thanks for the encouraging words. And eat lots of cranberries!

jimeka profile image
jimeka in reply to Sukie427

I wish I could but they upset my stomach 🦋

Sukie427 profile image
Sukie427 in reply to jimeka

Oh my goodness. Ask your PCP about a good probiotic. Better not to get a UTI and avoid the suffering if there is such a thing.

Iona60 profile image
Iona60

Thanks for warning us and so glad that you are doing better.

greaterexp profile image
greaterexp

I’m sorry you were hit so hard. I hope your remaining recovery goes swiftly. Thanks for the warning.

Sukie427 profile image
Sukie427 in reply to greaterexp

Thanks to all of you for your good wishes. I am searching for a good probiotic that hopefully will prevent these infections. I don't ever want me or anyone else having to go through this again.

agate profile image
agate

Sukie427 , it's a shame you've had this MSery. I've had MS for over 30 years, and UTIs were among the worst experiences I've had. They were never easy and sometimes the kidneys became involved as well. I no longer know how many UTIs I've had--too many to count. I diligently drank cranberry juice for quite a while but lately I've been finding out that cranberries, cranberry juice and cranberry supplements have been shown to have no effect. My doctor tried to tell me that at the time but I was desperate enough to try anything that might help prevent UTIs or make me feel better if I had one. I keep a supply of pyridium (AZO) on hand at all times so that at least I can try for symptom relief until I can get the right drug. It usually involves going to a lab and having a urine culture done, and it takes time before they even find out what bug they're looking at.

DebbyLou profile image
DebbyLou in reply to agate

agate Me too!!I am sorry you have this experience. Misery does love company though. Since I am A-symptomatic to UI's, many times I wind up in the hospital so I can have IV antibiotics. That is usually 4 days of sheer misery. Hospitals are definitely a place to avoid!! I was sent to specialists to find out if I was a candidate for Botox or a prophylactic low-dose of antibiotics to. defend against more UTIs. The answer was "no" in both cases. Good luck with coping and god bless you!

agate profile image
agate in reply to DebbyLou

Thanks for your reply. I had understood that asymptomatic UTIs aren't being treated much at all any more. You must have developed some symptoms if you landed in the hospital for IV antibiotics. Maybe your kidneys were involved? Yes, UTIs are no simple thing if you have MS. I guess drinking plenty of fluids is a good idea. I try to do that.

DebbyLou profile image
DebbyLou in reply to agate

agate@ I went to the doc because I was vomiting, pain every everywhere, eyes blurry, balance much worse. Neuro ran the normal test for UTI. Sent me straight to hospital and sent urine out for culture. Said she was sure it was severe and was going to get a start on iv antibiotics. Good thing, too. This has happened 4 times in 3 years. I have wound up with sepsis 2x. My kidneys have minimal involvement. It seems you are correct that asymptomatic doesn't receive treatment. And so, we keep on keeping on.

agate profile image
agate in reply to DebbyLou

DebbyLou , how miserable that must have been! People with MS and some of the other neurological disorders should probably be in a special category--people who need antibiotics when other people can get along without them. But the medical profession is very gungho about not overusing antibiotics these days, unfortunately for many of us!

erash profile image
erash

So sorry for your experience but glad you are beginning to recover. And thanks for the "public service announcement" that keeps UTIs on our differential diagnosis when we feel like we are relapsing 🌈

mrsmike9 profile image
mrsmike9

My neuro is constantly testing me for UTI's. Haven't had one since forever. This sure explains why he does this! ~ Feel better!

Jazzyinco profile image
Jazzyinco

Ouch! Precious Sukie, I am so very,very sorry u R having all these troubles, I Pray in the Mighty Name of YAHSHUA that U R Healed, & Comforted! Relieved of all pains, & to stop falling sweety!💜💙❤💗💌💖😍 Stay Blessed allways in YHVH! Prayer Truly Works in the Righteous True Hebrew Name!💜💙❤--Jazzyinco

Ggwhitney profile image
Ggwhitney

Hi Sukie

I am aware ofhow UTI's wreck havoc upon our bodies, way too much personal experience😢😢 just last week I was convinced I had one, but no just crappy MS. I now get fewer infections than I have in the past. My urologist prescribed Hiprex, & D-mannose which I get on Amazon

Good luck

Gretchen

Sukie427 profile image
Sukie427 in reply to Ggwhitney

Hi, Gretchen. I should have thought of D Mannos. My dog kept getting UTIs and the vet said to use that and I did and it worked. I forgot all about that. I'm going to start taking it. Thank you.

Fancy1959 profile image
Fancy1959

Awe Sukiw427, I understand about having bad UTIs. I've been there and done that and had such severe pain that I hate it number one to use the restroom and number to couldn't stand the cramps that I had in my low low abdomen. One UTI was so severe it took a couple rounds of antibiotics to clear it up. The good news is since then I've really worked on emptying my bladder completely. The best advice I can give you there is to be patient and don't rush things. Number two I have started using better hygiene in my lower area. I always use washcloths they're disposable that I get from the chains and I clean up my urinary tract first and then move back to the bowel track afterwards. In addition to this I am also taking a cranberry supplement which naturally promotes urinary health. I also drink cranberry juice regularly. And so far so good I haven't had any additional UTIs since I started my new hygiene protocols and cranberry supplements and juice just over 1 1/2 years ago. Best of luck with yours and I hope this helps. It sure can't hurt and it's worth a try. Fancy.

Sukie427 profile image
Sukie427

Hi, fancy. I guess the jury is still out on the efficacy of cranberries. However, as you said, it couldn't hurt. I'm going to call my urologist and ask her what she thinks would be a good probiotic. And when I find out, I'll let everybody know. Thanks to all of you for your kind responses, thoughts and prayers. You all are always in mine as well.

eharoot profile image
eharoot

hi Sukie, I take a supplement called Ellura . its a cranberry type thing. its kept me out of trouble for at least the past two years. good luck with all this. That episode sounded dreadful

Susan0528 profile image
Susan0528

Sukie427, So sorry to hear your weren’t feeling well. Thank you for sharing your journey with us.

cljones profile image
cljones

I had a UTI in May with no symptoms like lower back pain or burning, just weak leg's fatigue and severe pain in my neck and shoulders. I thought I was having a relapse. I couldn't walk to the bathroom without help or get up out of chairs. I use a walker all the time but it was 10X's worse. I had to miss TP for a couple of weeks because I couldn't drive. I called my neuro and was told to go to the ER. They gave me steroids. Then 10 days later they called and said did your doctor call and tell you, you have a UTI and put you on antibiotics. No, so they sent me out a prescription. I still haven't fully gotten back to were I was. Probably never will. That seems to be the way it works for me. Now I know what to look for. I was told cherries are good for the kidneys and bladder. So now that they are in season I try to eat those.

cljones profile image
cljones in reply to cljones

Just read my post again I meant PT>

RoseySawyer profile image
RoseySawyer

I'm so sorry that happened to you. Everyone I go to my Neurologist they always have me pee in a cup on every single visit and check my temp to see if I have a UTI. Uti's are not good for us (MSers). My Neuro told me that as soon as I got out of the hospital. The same as staying away from strep throat. I'm so happy your better. ❤🌷

You may also like...

Everybody Watch Out!

knowledge I have always been a bit of a cluts but these days, I can't seem to catch a break. I...

Watch out for those Sisters.

parking lot facing another sign: GO IN PEACE. YOU HAVE JUST BEEN SCREWED BY THE SISTERS OF ST....

Watch out for ice! Ouch 🤕

Fellow U.S. MSers Watch out!!!

cold goin around & it totally knocks us OUT!!! I have had it for 2 days & way more ackey now! It't...

Watch out for that distracted Walker Giant trip hazard. !

their activity is. . I have literally almost been knocked down with a walker in my hands or a cane...