Might be getting somewhere eventually

My first post from 2 weeks ago was under the topic of symptoms here

healthunlocked.com/lupusuk/...

Starting a new post under getting a diagnosis as I've been to the Docs today (different GP at the practice) and he's going to repeat my clotting and other bloods and do bloods for antibodies . No idea what antibodies as it takes all my brain energy and concentration to get this far. Have to wait 8 days to get appt for bloods, but have a new patient MOT on Wednesday so I'll ask if they can do the bloods then. He's also agreed to a Rheumatology referral and when his secretary called I asked to go to Freeman Hopsital at Newcastle. She said there aren't any appts available for her to book online via the wonderful "Choose and Book" system, so she's sent the electronic referral through to the hopsital, so no idea how long the wait is. The Q/E at Gateshead was exactly the same so couldn't get an idea of the wait times there either.

He also logged into the lab system regarding the urine microscopy from 2014 which had blood, pus and epithelial cells in which I'd never been told about and the labs results show that they did do a culture which was negative, so now I'm wondering if it was a low grade chronic infection which wouldn't culture. Must have been infection somewhere if there were pus cells. They told me that the recent urine dipstick at GPs was negative, but I'll take one on Wednesday. I've had antibiotics for an infection after an impacted wisdom tooth extraction last year, so maybe that's zapped it. I do get cystitis "twinges" if I get dehydrated or drink fresh orange juice, even diluted 50/50 or more with water, which is the only way I drink fruit juice. Tend to drink diluted pressed apple juice nowadays if I fancy a change, but mainly I just drink water apart from my mandatory Latte first thing in the morning!

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  • πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹Hello MW, and thanks for this update...sounds like your Show is on the Road πŸ‘πŸ‘πŸ‘πŸ‘

    Just reread the previous discussion via your link (thanks: good idea to give us the link)

    Re your history of infections + current suspicions: have your immunoglobulin levels been checked? Immunology investigations are making sense of my long history of recurring complex persistence pattern multisystem infections (this began years before treatment with immunosuppression) apparently the main causes in my case are early onset sjogrens dryness + early onset Primary Immune deficiency aka PID (hypogammaglobulinaemia G, A, M + lymphopenia) creating chronic bacteria-driven pockets of sepsis in urinary tract + sinuses + stomach....all of which usually test neg but even so do damp down when I take high dose long course antibiotics for some other infection that has tested pos. So now immunology has me on daily coamoxiclav indefinitely, with a view to IVIG treatment should breakthrough infections occur

    Just a thought πŸ€—πŸ˜‰

    Am looking forward to following this discussion

    Please continue to keep us posted...the wonderful detail you give us is vvvv useful

    πŸ€πŸ€πŸ€ coco

  • Hi Coco, No not had any "specialised" tests yet. I'm assuming that he'll do IG levels, but who knows? They never tell you anything. Even when they do your BP. They should be routinely telling people what their "numbers" are. I thought they wanted people to "take control" of their health problems and take more responsibility? I think that just means that when they tell you to do something you do it. When I go in there I can't believe how subservient I feel. And that's me, who had no qualms about advocating for my patient by telling a Doctor that he wasn't going to do what he was thinking about doing! I think half of it is that my brain power is flea sized ATM and rheumatology is something I know virtually nothing about.

  • Looks like it might be 17 week wait for Rheumatology at Newcastle. Could've got maybe 12/14 weeks at another hospital, but woud rather go to Newcastle I think.

  • GRRRRR....will you go on the cancellation list?

  • no idea, but if I get the chance, yes! Its a long time. See if bloods show anything. GP today was rather"gobsmacked" πŸ˜‰ that my last GP wouldn't do any bloods at all, not even standard "fatigue" FBC and Thyroid

  • Mega GRRRR re your previous GP....HURRAH RE your move to this more on the ball GP....EEEEEK re a health establishment that enables these despicable disapraities πŸ™„πŸ˜œπŸ€

  • Agree. I get very frustrated at not knowing and wondering how long it's going to take. Sometimes wonder if it's all in my head! Today though after I pushed myself to walk 2 miles yesterday I knew it definitely wasn't! Talking of things being in your head; this Tinnitus is bugging the life out of me ATM. Now regular over past 2 weeks or so. Huge GRRRRR.

  • πŸ˜‰ glad you're over coming your inner"it's all in your head" demonπŸ‘Ή...that's the voice to ignore πŸ‘πŸ‘πŸ‘πŸ‘

  • I can relate to so much to what you say here.

    I'm so pleased you feel like you're getting somewhere at last, sometimes it takes a different dr to pick up on things, but it's so frustrating having to wait so long. I've been back to the dr this morning with a bladder infection, nothing ever shows up on dipstick, occasionally leucocytes and nearly always negative lab test, but like the urologist once told me just because it doesn't show up in the test doesn't mean you don't have an infection, I always remind the dr's of this for fear that they won't give me antibiotics! I dread having this, bladder pain is horrid😫, I have nitrofuratoin as my emergency bladder antibiotic but after four days it's still bad so she's given me a different one! I can't believe they didn't query what they found in your urine back in 2014 and didn't follow up on it just because culture was negative. After having tests missed out and others not picked up on ( declining kidney function wasn't picked up for 6 months) I always ask for copies of results for my own files now and so I can check them. It's funny how you say about how subservient you feel when you are with the dr, I'm at that stage now where I ask questions and want answers all the time and when I'm not happy I now tell them, once upon a time I would feel that way and just say 'yes dr' and be on my way....even though like you I've worked with many over the years, the trouble is I think they then think you're being difficult, stroppy and a bit 'crazy', I'm not crazy just desperate to feel well and happy on some level!

    And as for your tinnitus I can hear it from here Susan and it looks like you're the other end of the country to me ( I'm in sunny Eastbourne) ...it's loud and bugging me tooπŸ˜©πŸ˜‚πŸ˜‚πŸ˜† drives me nuts!!

    Diane🌺Xx

  • Lol. It's not too bad ATM. I sometimes think we should all act really really crazy and we might get better care. I told my last GP, in an attempt to get something other than tablets after the arson incident, that if it would speed things up I would go and throw a brick through a shop window (safely, of course!).

    This UTI thing is quite interesting. If my brain serves me correctly, we're more prone to UTI's after menopause anyway because of changes after menopause. Also that older women don't always get the classic symptoms of UTI. My Mum had delirium (like dementia is quickest way to explain it) with a UTI when she was visiting us in the USA and didn't have any of the classic UTI symptoms at all. Luckily our son was with them having dinner at the time and noticed something was off. Dad just kept telling her to drink her wine!

    It is disgraceful that they never followed up on the urine microscopy at all. ATM I seem to have days, like today, when I PU gallons of very dilute urine, and then other days, like yesterday, when I hardly go at all and it's very concentrated, Doesn't seem to relate to how much I've drunk or the weather or anything else really.

    Definitely getting them to dip urine tomorrow (awful, but I don't trust that anyine actually did it last week)

    Can't engage much tonight as it was Dad's 84th today so we went out for lunch, my husband was awake at 6 this am with one of his sinus headaches, and we met the builder at the house parents are buying later today, so pretty lifeless now. Have no idea how I'm going to get though the next 2 months of builders, house moving and the court case. My brain can't deal with lots of different things at the moment and just seems to go into melt down, particularly if something unexpected happens or if people ask lots of questions .

  • Heavens,never been to the Docs so much in my life. Urine dipstick was negative. That's good. GP has requested re- repeat clotting, Lol (Practice nurse read out from notes "Clotting results borderline"!) ESR (good,as it's not been done before) and Auto antibodies. Can anyone tell me what tests they'll actually do at the lab? I assume ANA, and then will it depend on the result of that, or does it depend on what's written on the clinical history part of the lab request form? Hopefully they're not just going to do ANA, as that can still be negative even if there is something going on. Is that right or am I getting confused with the ESR result?

    Tinnitus is absent today, but my scalp is driving me crazy .

    Thank you.

  • Hello.

    I can't comment on your bladder infection, although years ago I suffered re-occuring cystitus and so know how horrid and painful that can be. But I would say, get your blood tests printed out at the GPs. Mine always do when I remember to ask for them. Like you say, you never remember everything at these appointment - too much to take in with our brain fog. So it's good to have them to analyse at a later date and for future reference. I have also put a request in writing to my Rheumy and my Dermy, that all correpondence, to my GPs surgery or to other doctors/consultants are ALL cc'ed to me. They have done this and it helps. As you say, they don't tell you the patient half of it! Very, very annoying! Best wishes.

    Wendy

  • Thanks Wendy. I agree re forgetting things once you're in there. You know you only have 10 minutes , it's a bit like a time trial! I'm nurdy now. I've got my blood results in a table on my 'puter so it's easy to compare them over time.

  • Got a phone call on Friday to say they needed to repeat the clotting as the sample had clotted. No doubt the tube was underfilled and it sat around for too long before getting to the lab. I've been today.

    Receptionist told me that ESR was 7 so guessing that it would be extremely unlikely that I have anything antibody related going on????

    Re auto antibody tests, only other result available was a negative rheumatoid factor, but I'm hoping that there are some other tests that aren't back yet. Bloods were done last Thursday and today is only Monday.

    Hey Ho.

  • I received a letter from GP on Saturday saying that my clotting is still abnormal and he's not sure what that means so referring me to a Haematologist. Can't believe he's written to me and not mentioned the results of the "auto antibody" tests! Still not heard from Rheumatology at Newcastle. There were no appointments available on Choose and Book (at any of the hospital offered) so the GP secretary had to send my details so they could contact me and today is the deadline (2 weeks). I know have to ring the secretary for her to make an appointment with haematologist.

    First GP wanted me to have a spirometry test. I booked it via community respiratory team and they told me I need a salbutamol inhaler and a spacer device. Call GP, nothing written in my notes about that so they have to speak to the GP. They call back and tell me that there's a prescription for me to collect with the 2 items. Β£17 for scripts to have a test? Wondering why if they think I might have something going on in my lungs they don't just send me for a chest X Ray. Already paid Β£140 for bloods which IMO should have been done by GP last year.

    Now getting some vague sharp pains in my chest. Both sides. Random and short lived mostly. Yesterday I had pain in my left shoulder,upper chest and upper arm. A constant ache. Was tired so took Ibuprofen and went to bed. Getting twinges still but not constant. Funny, but it was almost exactly like a pain I had once when I was about 10 which Doc put down to "growing pains".

    One could quietly die in the 4 months it takes for all these referrals. GP's seem incapable of doing anything but the most basic tests, if that.

    The whole process is wearing me out. Court date and purchase of parents bungalow looming is not helping.

  • Now I can access my "records" (but not notes from GP consultations!) online.

    Anti-nuclear factor level Negative

    Mitochondrial antibody screening test Negative

    Anti-smooth muscle autoantibody level Negative

    Parietal cell autoantibody level Negative

    Anti liver/kidney microsome type 1 antibody level Negative

    Rheumatoid factor level < 11.4 iu/mL [0.0 - 15.0]

    Anti-cyclic citrullinated peptide antibody level

    Anti-cyclic citrullinated peptide antibody level < 0.4 u/mL [0.0 - 10.0]

    Still feeling and looking dreadful.

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