20 Comments
Sep 22, 2022Liked by Gavin Giovannoni

I just have to say thank you again for posting the information you do, it is massively appreciated by patients. There’s just so much that healthcare providers don’t take the time to explain, or they don’t explain it well. You always explain things in ways that are straight forward and easy to understand.

They don’t seem to encourage at home tests here, so I always ask for a 2-year PRN order for lab testing, but this sounds pretty easy, I’ll definitely be checking into home testing.

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author

You only really need urine monitoring if you recurrent UTIs, which typically occurs in pwMS who have bladder problems.

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Sep 22, 2022·edited Sep 22, 2022Liked by Gavin Giovannoni

Yep, I have neurogenic bladder (retention) and have to do clean intermittent catheterization much of the time, which makes me prone to infection. Though working on super sterile technique helps.

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founding

Tilt, I empathize. I’ve been doing strips twice a week for years. Rarely do nitrates show up, but the infections can be mighty silent, and the last one was kidney. I’m now using a sterile cath system, taking methanamine and starting Myrtiq (sp?). I hope this Myrtiq for urgency works. I need sleep! I consider myself fortunate that catheterizing is fairly easy, although tremor can be a challenge. Thanks again, Prof G for your knowledge. I only check nitrates and leukocytes. I don’t think I need more. ?

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Thanks for this! You guys are making me realize I need to up my game with this. I too have noticed that I don’t usually get symptoms when an infection is present, no burning/tingling, sometimes no urgency even. Body temp, overheating, and other symptom worsening is pretty much my indicator.

I’m not far into MS, I just had some very nasty attacks at my outset that unfortunately hit the bladder early, before I was able to advocate for a heavy hitter DMT.

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founding

Like you, I have few “normal” symptoms anymore. No burning, as you say. Eventually maybe I’ll get a “quivery” sensation. Those infections that (for me) can get serious quickly. Before I know it, I have a fever that can stay around a while, even with an antibiotic. It’s good you’re watching your body temperature!

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Sep 22, 2022Liked by Gavin Giovannoni

Thank you very much for this post!

I did order some urine dipsticks after reading a previous post of yours about monitoring urine for UTIs. These days it’s so easy to obtain dipsticks even on Amazon.

My doctors look at me funny and ask if I have a medical background because I use the terminology you provide for us in your Selfies. It really helps us to have a voice in the care of our health. Thank you!

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Sep 23, 2022Liked by Gavin Giovannoni

Can ms cause cranial diabetes insipidus?

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author

Yes, it needs to cause a lesion in the hypothalamus. It is however very rare.

Tiedje V, Schlamann M, Führer D, Moeller LC. Diabetes insipidus as a rare cause of acute cognitive impairment in multiple sclerosis. Mult Scler. 2013 Oct;19(12):1676-8. doi: 10.1177/1352458513506952. PMID: 24132004.

https://journals.sagepub.com/doi/10.1177/1352458513506952

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Sep 22, 2022Liked by Gavin Giovannoni

I have been ready your articles for awhile, very interesting! This particular article caught my attention, I am talking Ocverus infusion for my MS for 2:yrs now.. I have had a couple of UTI over the years, but lately It has shown in my blood that i have gross hermaturia, doctors have no idea where it is coming from, checked bladder no problems. Have you heard of this with MS patients? Thanks Michelle

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author

No. But people with MS get other diseases. You need to get it diagnosed.

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Sep 22, 2022Liked by Gavin Giovannoni

Okay, urologist said they don't why

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Sep 22, 2022Liked by Gavin Giovannoni

Hello Doctor- Didn’t know I could be doing this on my own, thanks for the heads up. I’ve been wanting to ask a question, and it’s related, so I’ll give it a try.

I’ve seen and see a urologist for monitoring of Kidney Cysts, so urinary function always comes up. I have both urgency and retention, due to BPH (under control), obstructed “pipes”, and of course, the MS. PSA is normal. Been this way for 6,7+ years, no UTI yet. The solution always comes up that intermittent catheterization (IC) is the fix. Then I explain the following and a “glazed eye look” without an answer, usually is the response- I read, on one hand that urinary retention can be a harbor for UTI. But I also read on the other hand that UTI occurs with IC. One of the things that “keeps me going” is hunting for antiques, etc. at flea markets and auctions, and well, I’ll tell you the restrooms at these places are not the places to go if you want to IC. That’s 3 or 4 days x 8 hrs. The restrooms are often just plain nasty. And the water levels are often too high, bringing the dreadful bacteria even closer to point of entry.

So I have no issues with using a “Man’s Diaper” when out and about including when the toilet situation is not favorable. Question is, is there something about IC I am missing? Sounds risky if you do or don’t do it. I am aware that recurrent UTI’s are one of the things that can get you, the longer you have MS, so I am concerned. Exact retention is not really measurable on a reliable basis, but let’s say I hold 150 ml at min and 400 at max, before my bladder indicates to me that a release is forthcoming no matter what I do. The release is not forthcoming as in the good old days, but it eventually gets there. To catheterize or not to catheterize, that is the question. Any bits of information you can add to my quandary?

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author

I agree the decision to begin to self-catheterise or not is not easy and depends on a lot of factors apart from daytime frequency and urgency and incontinence s. Some of these factors include (1) nocturia and not being able to get up at night, (2) UTIs and how frequent they are, (3) dexterity and vision (some pwMS can't manage due to MS-related disabilities), (4) side effects from bladder drugs, (5) being a male of female (females tend to find it easier due to anatomical factors), (5) needing to dehydrate yourself to go out, (6) need for bladder Botox to treat bladder spasms, (7) failure to respond to other treatments (e.g. supra-pubic pressure, bladder vibrators, posterior tibial nerve stimulation, etc.), (8) co-morbid obesity (some people who are overweight have difficulty with ISC), etc.

This is why the decision to start ISC needs a professional assessment via a continence service. So there is no right or wrong answer and definitely no quick answer here.

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Thank you very much for your answer.

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Sep 22, 2022Liked by Gavin Giovannoni

Thanks so much for your clear and simple explanation of reading a dipstickand what the results may indicate. I have used them this year at home as have had symptoms of UTI infection on multiple occasions.

Sometimes I get positive results for leucocytes and nitrate and blood (at low level). Sometimes on culture they don't detect bacterial growth. My Urologist has followed up with bladder cystoscopy, CT scan of kidney and prophylactic Trimethoprim (6 month course). Cystoscopy was clear with no issues, CT scan showed a small kidney stone (4mm) so no action there. So, hearing that a kidney stone could relate to the detection of blood in the urine helps shred some light on why this might be detected even though bacteria may not be present.

It helps so much if I gain an understanding of what the results indicate.

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Sep 22, 2022Liked by Gavin Giovannoni

Is there a smart phone app of some sort where one can take a dipstick picture and collect data automatically?

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This is really helpful and easy to understand! Thank you for making this, it eases a lot of worries and educates people!

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Yes, that is correct. You only need the tests for UTI monitoring and possibly for urine monitoring post-alemtuzumab treatment. The former is done twice weekly or weekly and the latter is done monthly. Please make sure you don't use tests beyond their expiry date.

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