Haematuria, sweating, nerve issues, bladder issues - anyone had these symptoms together? Were they linked?

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So I’ve had various strange symptoms for about 18 months and been passed round different specialists. I think I’m getting the right investigations, but who knows. I just wondered if anyone else had experienced similar - I know MN can’t diagnose me but I suppose my hope is that someone might say “Oh yes, I had those symptoms and it was actually X.”

Frequent foot cramps, pins and needles, problems with body temperature / unable to tolerate heat.

Localised excessive sweating (unconnected to temperature), all possible bloods done, nothing found (some results ‘ok but outside normal parameters’), referred to dermatologist, topical treatments didn’t work, medication stopped it but then I had phantom sensations of wetness.

Clumsiness, dropping things strangely (almost like a very slight jerk, just for a second), some bladder problems (mainly frequency).

Dermatologist referred me to neurology based on the above.

Had virtual consult with neurologist in May. He said he thought it was potentially some sort of neuropathy (unclear if this would have a known cause - worth noting I definitely don’t have diabetes), and that they had ruled out things like MS. He had my GP surgery redo bloods in June, again some results slightly abnormal but nothing found.

Had EMG/nerve conduction studies in July, the tester (neurophysiologist?) said I don’t have a large-fibre neuropathy, whatever that means but I’m waiting to hear back properly.

Bladder problems suddenly got lots worse (urge incontinence, was having occasional leaks - now daily, peeing a lot at night), GP told me to mention when I went for nerve tests as may be connected.

GP also requested urine sample, could see the results on the NHS app, had microscopic traces of blood. Oh, I thought, is blood in pee a problem? Googled, read the NHS page, realised I should’ve mentioned it.

I’ve had blood in my pee (cola coloured) very intermittently, maybe 5 times in 18 months, had no idea it was anything to report (under 40, missed the memo).

Based on that, GP did urgent referral to urology, had flexible cystoscopy last week which was clear (and actually seems to have calmed my bladder), having CT urogram tomorrow.

Anyone? I am very sick of being poked and prodded! They have ruled out things like anaemia or thyroid problems, and I was already taking vitamin D for a known deficiency.

I've had bladder issues for 3 years, went through a period of having blood in urine and once lumps of blood coming out. I've spent ages having tests - on the NHS I didn't get any answers. I had private insurance at the time and private did test for bladder cancer (negative) but said it was an unusual bladder infection which had been missed by NHS, NHS test day before said no infection. Private one said strong but rare infection. Private gave me 7 days antibiotics after which bleeding stopped and never had since. The constant infections only stopped after went into hospital after an operation as collapsed and picked up I had a fever and thought a pelvic infection from op a month earlier and got given 14 days double antibiotics. That stopped the 9 month of constant bladder infections, only half of which the NHS would give me antibiotics for. Rest of time I had the same symptoms, was too ill to work from them and getting delirious quite often, but just left. I still have urge incontience and have to wear large pads all the time but at least infections stopped. I do test anaemic and told to take vitamins from supermarket and it's mild. Lots of tests from neurology but no treatment - just found small vessel disease but not linked. Ms was ruled out though get pins and needles from time to time.

I'm also very heat intolerant - just been in hospital as very ill with heat but don't think that linked to bladder. Get a lot of feet swelling. No treatment for either. Recently started sweating a lot but unusual for me - they don't know why, said maybe an infection (blood tests showed infection) but no treatment offered. They did say heat intolerance could be due to electrolyte imbalances but I come out mid range in blood tests so doubt that's the cause.

So lots of tests but just left to get on with it really. On the urodymnamics test the nurse said she thought the urethra was blocked but all test results got lost and was a different doctor every time and appointments only every 2 months or so. They then said to repeat all the tests as they'ld lost them all but having just spent a year having tests / appointments and getting nowhere I gave up at that point.

Hope you get further than I did.

When they did the cystoscope, did they also look up into the kidneys?
The blood must be coming from there if bladder is normal.

@KoalasandRabbit really sorry to hear about all this. Has anyone checked your kidneys properly? I believe feet swelling may point to kidney problems?

If you don’t mind me asking, what test did you have for bladder cancer that wasnt done on the nhs?

@Weenurse would they do that in a cystoscopy, or a separate test? I’m having a CT urogram tomorrow which is believe is specifically to look at my kidneys. I’ve been assuming they’ll find something - but is it possible it didn’t come from the bladder or kidneys and was just random?

I’ve never had a UTI that I know of. Never had symptoms of one before this year and macrobiology came back as no infection.

And thanks both for your replies, it is appreciated.

I could have gone private or NHS for bladder cancer checks so I don't know what NHS would have done for those but privately I had blood tests, urine test and CT scan. The CT only showed an enlarged adrenal gland, large uterus they said likely to be fibroids (strange as I'ld just had fibroids removed) and a small ovarian cyst. The kidney blood tests at that stage where fine apart from one marginally out test but then reverted to normal.

I probably should have kidneys retested as the swelling has happened since, was 9 days recently, they said due to heat/car journey but it was 20C. They asked me about medical history but I didn't mention bladder issues as I was feeling half dead at the time and it takes forever to go through all the history. Thanks for that.

Really sorry to hear about all the mishaps but I do hope you can get things checked out.

I’m also both pleasantly baffled and somewhat alarmed that all these investigations have been going on during covid - I feel like I have quite nondescript symptoms so had expected to just be binned off.

I found at the start of covid they were signing me off early in March (though could completely understand was about saving lives whereas mine is about quality of life) and my friend had the same but last week when I went to hospital I saw loads of doctors and had lots of tests and got my own room, TV, food/drink and bathroom and staff were so nice and coming in a lot. It was like when you go private but without paying.

How did the scan go and when do you get the results?

Thanks so much for asking. The scan was a very strange experience - they aren’t kidding when they say the contrast injection makes you feel like you’re wetting yourself!

Should have the results in the next weeks but it’s all a bit unclear as they’ll go back to urology (who ordered the test) and not my GP. So now we wait.

Any idea on when that might be?
Are we taldays or weeks?

No! They just said if I don’t hear within 2 weeks to chase urology.

Will they even contact me at all if it’s clear?

It won’t go back to the GP as urology requested the scan from radiology so the results go to them.

And now I’m repeating myself, soz.

I'd be thinking cauda equina syndrome, which could cause the pins and needles/urinary problems/phantom sensations. Not sure that would tie in with excessive sweating/heat intolerance though.

Good luck 💐

Thank you!

How old are you? Could it be menopausal? Vaginal Atrophy can cause horrendous urinary issues

39. Not sure - drs don’t seem to think so.

Don’t have other symptoms of that But thanks for the suggestion!

I was thinking hormone related too.

The bladder issues, twitches and heat intolerance could all be low estrogen. I had all of those before I was diagnosed with premature ovarian insufficiency age 38.
Blood tests can be tricky due to fluctuations in hormones but a few tests showing low estrogen/high FSH should be able to determine this. Hope you can get to the bottom of it

All of your symptoms sound menopausal to me, mine started at age 38, but my periods were always regular. I don't think there's a list of about 39 symptoms somewhere, but I had most of what you've listed. I also had a fibroid and adhesions that were causing issues, but thanfully resolved with a hysterectomy. A check gynae wise might be worth doing just to rule things out, it took an mri and the actual hysterectomy to discover mine. I hope youre sorted soon, not knowing is always difficult I think.