I am currently undiagnosed, pending my second MRI (to satisfy two incidents in space and TIME). One of the symptoms I mentioned to my MS specialist (who rolled his eyes like whatever???) is trouble with my bladder. Sometimes I have to pee again as soon as I leave the bathroom. I feel like I empty my bladder, but then feel the urge again and go back and pee more. Sometimes I have to go badly but when I get to the toilet, it's hard to make it happen. And although I never notice it happening, I suspect some leakage because sometimes my underwear smells of urine. Ugh.
This morning, I went first thing when I woke up and felt like I had emptied my bladder. A bit later I had a bowl of cereal, that's it for the morning--no other food or drink. Within 45 minutes of eating, I peed 4 times. The thing is, each time I go it's not a LOT, but it's definitely not a little. It's not just a few drops.
This can continue for days or weeks at a time. I find myself avoiding liquids during the day so I don't have to go constantly. I am a teacher and I can't just use the restroom whenever I feel the need.
Unfortunately, the MS specialist I am seeing has a reputation in reviews for being dismissive, probably due to over diagnosis of MS lately. So I'm not surprised that he rolled his eyes to this and many other things. But to me, this feels like a very troublesome symptom. If you have a similar experience, how do you manage it? Anyone else in a job like mine where you can't use the restroom often?
i try to keep my magnesium status up to reduce any potential connections to muscle spasticity.
coffee increases mineral excretion and i've noticed it also aggravates things in the urinary dept. i do much better if i hydrate with water and save the java for some point when a toilet is readily accessible. although it's not something i personally eat, i don't think cereal with milk would be a problem for me.
take control of your own health.
pursue optimal self care, with or without a diagnosis.
Without adequate fluid intake you have the risk of Urinary Tract Infections(UTIs).I find myself avoiding liquids during the day so I don't have to go constantly
It's always possible that your bathroom habits are normal for you and not something to be concerned about.
Does this mean you have had a prior MRI and lesions were found that are suspected of being MS? Was this of the brain, spine or both?I am currently undiagnosed, pending my second MRI (to satisfy two incidents in space and TIME).
When I first started having these issues I had my urine tested for everything, and the doctor did a few other tests too. I think my thyroid? Everything came up normal. I may seek an appointment with a urologist in the future, but since this comes and goes, I'm not sure that typical solutions would apply. And I'd have to get an appointment during the time it is happening to me.
This is DEFINITELY not normal for me. It began in the winter of 2014 and I remember that because it was a marked change. That's when I saw a doctor about it. It is also not the same all the time. There are periods when I have pretty normal bladder function.. this comes and goes.
As to my MRI, yes, I have had one already. It showed many small lesions, and one lesion large enough to be MS. It was done because I was diagnosed with Trigeminal Neuralgia in my 20s, which is significantly correlated with MS rather than typical TN causes at that age. Once I reviewed MS with my GP, I realized I have many other symptoms that I had written off as "bodies are weird" type of stuff, because I have never been eager to go to the doctor unless it's an emergency. I am getting my second MRI next month including spine this time, and also looking closer for another possible cause of the TN. However, I have it on both sides, and both types (TN1 and TN2), which is very rare.
My Symptoms Include:
Bilateral TN1 and TN2
1 major tremor episode
Intermittent feeling of stabbing pins/needles
Major fatigue for the past 5-6 years
Intermittent pain with eye movement
Bladder issues (above)
Episodes of hyper-sensitive skin
A few other things that may or may not be related, like getting dizzy with ringing ears, tight/weak hamstrings and hip flexor pain, etc.
I don't drink caffeine - just water (or sparkling water) all day and milk sometimes in my cereal. Now and then I have juice or tea after dinner at home where I can go to the restroom as much as I need. Anything with liquid does this to me. Fruit, soup, cereal, curry.. you get the point. It's almost immediate.
I am stuck between a rock and a hard place. If I don't hydrate, as Snoopy mentioned, it can increase the risk of a UTI. But if I do, I will need to use the restroom way too frequently. In my job I have very limited opportunities to use the restroom. I can't just leave a classroom full of 7 year olds to run to the bathroom repeatedly.
I have never had TN but I do understand it is quite painful, I am sorry you are experiencing this.
It is possible for TN to be a symptom of MS but TN can also be a stand-alone disorder. I hope all goes well with the MRIs and you do not end up with a diagnosis of MS.
I am assuming you already have plenty of information about TN but I did want to share this link:
https://rarediseases.org/rare-diseases/ ... neuralgia/
Have you seen an Ophthalmologist about your eye pain? If not I would suggest doing so, the more information you have the better your chance of a correct diagnosis.
I still believe you should see a Urologist. A Urologist can do testing that your regular Dr. would not do. Urodynamic testing can give a lot of helpful information about the urinary tract function. If the Urodynamic testing points to a Neurological problem it can help support a diagnosis of Multiple Sclerosis, along with MRI evidence.
This really isn't uncommon. Many things we eat have a fluid content, add to that the amount of regular fluids you drink and it's easy to see how you would need to go so often.I don't drink caffeine - just water (or sparkling water) all day and milk sometimes in my cereal. Now and then I have juice or tea after dinner at home where I can go to the restroom as much as I need. Anything with liquid does this to me. Fruit, soup, cereal, curry
take control of your own health.
pursue optimal self care, with or without a diagnosis.
Depends ( adult diapers)
Guards (An absorbent pad that fits in your underwear)
For men they make something called a Texas catheter. It does not go inside. It goes on the outside like a condom. Urine flows into a bag on your leg. Maybe there is something similar for women. Anyway It reduces my night time bathroom trips from 6 to 2.
Those aren't cures, just something to make it more livable.
You might also try keeping a log of your diet to see if anything in your diet is contributing to the problem.
Definitely you should see a urologist.
I am sorry to hear about your troubles. I have MS and I also have TN - you have my sympathy.
The bladder - I have similar issues - called retention. It can't empty properly. I was told to use a temporary catheter at one stage but then when I got tested I wasn't bad enough so I don't use it at the moment. I just go quite often but it varies. But do go and see a urologist. They will test your bladder function and check whether you have an infection.
I do take magnesium, and also oregano oil supplement (amongst many other things) for my TN but it is antimicrobial so helps avoid infections.
I wish you the best.
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However, this is one symptom I have plenty of personal experience with -- about 35 years worth, I'd say. (My neuros say it's not necessarily due to MS, either.) So, here are my own hints:
**Since I try to avoid meds, I've found the very best/simplest solution over the years has been to always wear a Poise pad just in case. (I do NOT like the other brands). At first I only needed "thin", "mini" pads, but you can experiment with the larger ones for long days of work, travel, etc. They're quick & easy to change, and provide peace of mind when you're out in public or a long way from a restroom!
**I hate to say it, but I've found "Depends" underwear are completely worthless for urine!! They're ruined with only a few drops, and it would cost a fortune to change several times a day, while Poise pads are way simpler and cheaper. I do use Depends often when leaving the house due to potential bowel issues, but ONLY with a Poise pad inside. Sounds ridiculous, I know, but I NEVER use Depends alone, and I could list a dozen reasons why they're such a pain.
**I found caffeine definitely contributed to accidents so, like you, I mostly drink water. I try to drink a lot when I first get up and after I'm in for the evening, avoiding it during my travels and again near bedtime. Avoiding liquids altogether is just asking for a UTI, though -- thus the Poise pads just in case.
My other general suggestion -- whether you get an MS diagnosis or not -- is to work on optimizing your general health. I feel that my own routine of a healthy diet and daily exercise for the past 30 or so years is the reason I was so healthy when I was finally diagnosed at age 52.
Even the bladder issues weren't much of a problem until recently when I started Plavix, which worked as a diuretic.
Good luck to you!
I do suspect I am not able to empty my bladder all the way because I go, and then immediately have to go again. That seems impossible if I really emptied the first time!
And jimmylegs... I didn't mean I drink water ALL DAY... I meant, throughout the day I just primarily drink water. Only later in the evening at home will I occasionally have something else like tea. I would estimate that I typically drink 24-36 oz. of water in a day (2-3 cans of sparkling water), and now and then I have some yogurt or cereal. I also don't eat a lot of liquid-laden foods regularly. And again, that is throughout the day, not all at once. Having to pee several times in a row from a small amount of liquid is very unusual.
I will pick up some liners for sure - thanks for the advice, everyone.
I am considering going to another doctor if he refuses, but I have Kaiser insurance, and he is the only "MS Specialist" they have in the area. I could go to another neurologist, but assume they would defer to his decisions because he specializes in MS. I just missed my window to switch insurance through my employer, so I have to stick with Kaiser until May of next year.
What should I do?
How are your Neurological exams/evaluations, are they normal or abnormal? When the spinal cord is involved they cause symptoms from the point of lesion down. They are well known for causing mobility problems. The only thing that "might" be related to your spinal cord would be bladder problems but without testing from a Urologist there is no way to know if your urinary problems are even Neurologically related.
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