u/DancingMonkey89

My 90 year old grandmother gets urine infections quite badly to the extent that they affect her memory and she gets very muddled. She had a urine infection about 3 weeks ago and they gave her a weeks course of antibiotics. At the end of the antibiotics, her memory/muddleness improved but she still showed signs that she wasn’t perfect the dipsticks showed light purple for leukocytes. I took her back to the GP’s surgery and the doctor said that she thought she had a trace of infection left but to let the rest of the infection clear itself and come back in 2 weeks if she still wasn’t right and they were sending the sample for testing to make sure. I called the GP’s surgery a few days later as they sent a sample off for testing but the receptionist told me it was negative/no action required which surprised me, especially as she had lower back pain that cleared within a week and a half of starting the antibiotics. A week and a half later and she seems to be getting more muddled again and I did 4 tests today and they were all showing signs of leukocytes in purple (along with testing my own which were negative just to make sure we didn’t have faulty tests despite using 2 brands!). Am I going mad? I don’t want to go back to the doctors for them to say she doesn’t have an infection again and put her through that as she gets very annoyed about it. Has anyone else experienced this?

I am peppered in blood spots all over my body (primarily my arms), and I just can’t shift the feeling that they’re related to my MCAS. About 10 years ago (pre-MCAS diagnosis), I saw a dermatologist for a very brief appointment regarding a mole and at the time I asked her and she quickly glanced and said they were cherry angiomas and that was it.

When being investigated by my haematologist for Indolent Systemic Mastocytosis (my baseline tryptase off medication is over 20), he thought it was unusual and thought it may also be an indicator of ISM however my C-Kit via blood draw was negative. Even my haematologist was surprised my C-Kit was negative due to my symptoms and lab work but we then went down the MCAS diagnosis route as I had responded to medication (HAT is rarely looked at/suggested in the UK so I am aware that it could be that I have that and not MCAS).

I haven’t seen anyone else with nearly as many of these as what I have (I have hundreds on each arm alone), and I don’t know whether to think it’s part of my MCAS or if I should pursue more testing?

They don’t cause any issues unless I itch and make them bleed but it’s definitely not pretty to look at and does make me quite self conscious of my arms especially.