Could I be having a relapse? Old symptoms flaring and one new (bad) one!

[Maggie2015]

Hi, it’s Maggie.

I need your advice about whether or not I might be having a relapse.

My boyfriend wants me to call my neurologist, but I DO NOT want to make a big fuss if this is just a flare, which happens periodically.

I noticed this past Saturday that I was having 20-minute or so bouts of the MS hug a couple times a day—not severe, just uncomfortable—and that’s still happening. I have this symptom occasionally and it usually passes.

Then, the last couple nights, I have had a sensation that there is SOMETHING stuck between the big toe of my right foot and the second toe. I’ve had this symptom on and off ever since I was diagnosed, and it’s just annoying. I usually tuck a bit of the sheet between those two toes so that there’s something truly there and then I can block it out until I fall asleep.

But then, last night, for the first time ever (well, since I was a child), I WET THE BED. I mean, I wet it, and I apparently slept through it, because when I woke up in the morning I was absolutely soaked from mid-back to mid-calves, and the sheets were soaked, the mattress was soaked, and I was cold and my clothes were cold and the sheets were cold.

I was horrified and of course, deeply embarrassed. There was obviously no way to hide it from my boyfriend, and I woke him up and told him, and then I changed out of my clothes and put them in a trash bag and got in the shower while he stripped the sheets and put them in the laundry and treated the mattress.

He was completely understanding and told me there was no need to be embarrassed, but he said he wanted me to call my neurologist and tell her.

She knows that I struggle alternately with urinary urgency and then what I call “frozen pee,” which is when I know I should need to go, and I have a distant sense in my body that I do need to go, but when I sit down on the toilet nothing happens. I’ve tried running water, humming, deep breathing, but after five minutes or so, and nothing works, I just get up and go on with my day—or night.

So last night was one of those nights when before bed I sat down to go and nothing happened after five minutes, and I gave up and went to bed, as I’ve done MANY times before. But I’ve never before wet the bed.

And it struck me this new (and awful) symptom along with the other ones I’ve noticed acting up again MIGHT MEAN I’m having a relapse. Please tell me what you think when you can. I’m a little scared.

And tonight and every night after, I’m going to SIT THERE UNTIL I GO before bed. . .whatever it takes.

Thank you in advance for any advice you can give.

Maggie

[Temagami]

Follow your gut- there is no making it worse by telling your neuro and odds are that the bed incident is related to your nerves. In the meantime, you can make use of the pee pads so you don´t have a bunch of laundry to do if it were to happen again. It´s not that you chose this happen, so please be kind to yourself. The bodily function glitches are embarrassing, but shouldn´t be ´cause we have no choice.

Might be worth holding a warm water bottle or a heated cloth bag of dried beans or rice (you can microwave it) on your lower abdomen when trying to pee- it should relax muscles to allow for flow.

Thinking of you.

[Tia1]

Hi Maggie, sorry that this happened. I'm sure that it wasn't fun, but don't be embarrassed. Now is the time to assess the situation to see what can be done. First thing would be to call the doctor and notify her of this new symptom and figure out what can be done to manage it.

I will be praying for you!

[mercadies25]

It's happen to me twice. I blamed it on my dog.😉

I always go pee before going to bed. Try not to drink too much before bed.

Tell your neuro they do need to know what's going on.

Kiss your boyfriend and thank him for being so understanding and actually taking sheets off and cleaning things up.

Good luck!

[Boymom123]

(((HUGS)))

Maggie, I totally get how you feel - I'd be embarrassed too. But the reality is that you have NOTHING to be embarrassed about - you have no control over the situation and your bf even knows that.

I would give your neuro a call. You may be retaining urine and that is nothing to shy away from. You could get bad infections and have more problems. Talk to her and perhaps see a urologist too. Good luck!

[DonnaD]

Call your neuro!! - Happened to me once - Not in bed but sitting at the table with the family and my kids had friends over too. I always make sure to get to the bathroom on time but that time there was suddenly a puddle under my seat. I felt nothing. We don't have carpeting and no one even noticed me as i quickly got a towel and wiped up the floor like something had spilled. But after that I was panicky. This could happen anywhere. I called my neuro and he told me to make an appointment with the urologist that works through the MS center. He sent me for some tests to be sure that it wasn't something else, but as an MS urologist he said - ok, you have an overactive bladder and gave me pills that control it. It's a known MS symptom, doesn't need a flair, but you don't have to go through life afraid to go to sleep (or to sit on the couch in my case). Call your neuro

About the frozen pee... One of the tests I did, they told me to go empty my bladder in the bathroom and then come back. Then with a catheter they drained a lot more - The frozen pee, I thought everything was out.

But I know what you mean when you feel you have to go and nothing comes out, so this is my trick... I found that if I go to the bathroom and go as much as I think I can, when I then stand up and go to brush my teeth I suddenly have to run back to the toilet and then there's lots more. Running water doesn't help me go but brushing my teeth does (I don't even have time to rinse or spit - I barely make it the 2 steps to the toilet). And now when I'm sitting on the toilet and have frozen pee, I just visualize myself brushing my teeth and it works!!