Support thread for those awaiting (and undergoing and recovering from) medical appointments,tests and surgery: PART TWO

[BreastmilkDoesAFabLatte]

This is a continuation of this thread, started a few months back by ohyouBadBadkitten as "a thread for you to vent in or post your 'hooray's'". Everyone is welcome, regardless of the nature or duration of their illnesses and whether or not they have a diagnosis. The last thread dealt with a real diversity of long-term and acute conditions, as well as many of the mental health challenges and fertility questions commonly associated with them.

We should probably add the standard sort of disclaimer about not necessarily being qualified or insured to offer proper medical advice, which means that if your symptoms start to sound a bit scary you'll get a few of us rather assertively shoving you in the direction of your local A&E department. As madsometimes puts it, "A&E for Mumsnetters would have Boden medical gowns, Farrow & Ball paint schemes and fruit shoot free vending machines selling organic elderflower presse. Pinot Grigio would be dispensed at wine o'clock. There would be public information posters warning about the dangers of googling Dragon Butter... the injuries resulting from Friday night threads would be quite horrific." However, we all know the reality of medical emeregncies to be signifiantly more stresfull than that, so if it's not life-threaningly urgent, we'll hold your hand and chat and support and speculate on the basis of the reasonably half-informed knowledge gained by our own life experiences.

Welcome. The kettle is on...

Thing is, he is going out there to work, initially, and for 4 days he will work his ass off while jetlagged. Last time, he went 6 days before and worked 7 days like a dog, then relaxed for a week, and I did not begrudge him it at all, he is lucky that he has family there and he should definitely take advantage of it. And the Hawaii thing, i guess that is just lucky too. If I had been spoilt rotten before he went, i would be less upset, but i just feel like I am the one plodding along holding the fort while he enjoys the fortunes of having an american family. Had my back been this bad when he agreed it and tickets booked I am certain he would not have gone. We both thought I would be ok by now, otherwise I would not have given him my blessing. It is not like I would actually want to go with him, not with my back as it is hauling two young children to the side of the world. I guess I am just not feeling very rational.

I have been to visit some friends today, and they are going to have DD for a sleepover with their almost 4yo next week/week after when DH is away, and they have told me to rely on them for help and if my back goes badly they will come over and take care of the children. I now have several friends who I would be spending time with anyway offering to help me as much as I need. And another friend is taking her out to watch The Twits in a NT country park one evening.

and I have just found the magic cure for pain. Paracetamol! Honestly I never realised how much paracetamol does! I always seen it as a low level painkiller, but I am impressed. I have taken some this week and it seems to be working, then out of it today, so just took tramadol and diclofenac, did not cut it at all and in a lot of pain. Took my meds before going to friends and bought some paracetamol took it 1.5 hours after tramadol etc, and blimey I went from being hardly able to stand to walking mostly normally and only in a little pain!

I am going to try to think more positively. It is not DHs fault I feel like this. If I was not screwed with my back I would have been taking the kids camping and it would be amazing, and I would not be upset about DH not taking care of me, would take it all in my stride. I got to find a way to just get on with things. If this is how I am going to be for the forseeable future, I can't be so down.

TGB! love the name! I am doing 4 hours each day, phased return as recommended by GP. Not sure I should be going back at all, but if I cant even do 4 hours there is a big problem, so i got to at least try it. then two weeks off then when i return from hols, 6 hours for the first week, back to full days the week after that (3 full days, one 2.5hr day).

sorry another epic post. I am not very good at short.

Hi

I've decided to name change back :-).

I'm going to read the thread properly tomorrow I just wanted to mark my spot upto where I am and to get the thread back into "I'm On"

I hope all is well. I'll be back tomorrow to read the thread :)

Good to hear from you again, Backpack. I was feeling a little worried for you, given that you haven't been around much. I hope you are ok .

BackPack!!!!!!!! Fab to see you back [tea] [bodendress]

Do tell us how you are...

Welcome back backpack :) Pavlov, I reckon most people underestimate the power of paracetamol taken properly.

kitten/britain Off-topic I know, but any news on the cat?

No :(

Which has given me 3 nights of very little sleep and an awful lot of tears.

Oh dear

I'm sorry...

hey ladies.
hope you are all doing ok and not struggling too much.

So, to add to my mix of ailments. I have now possibly got issues with prolactin production - too high. I went to see gp about, what i thought was, a relatively minor problem, before xmas, told to monitor for couple of weeks and return in the new year for blood test/further chat if not cleared. Well, i then put my back out badly and from them on my back has been the predominant issue in my life, along with a red herring kidney thing.

So, finally got around to going back this week to discuss the symptoms i have and and bloods have been taken. Seen female gp this time, she is very quick in acting, and also very direct in what she thought the problem was (high prolactin levels) and how simple this is (not simple at all as specialist will need to explore why if bloods prove suspicion).

Typical. never rains but it pours.

You know what? i actually just feel really bloody unwell and like I am not on top form at all. Not even just my back, just generally feel yuck. I am hoping this might be the reason and they can just give me hormones to sort it out, but i am suspecting it is not going to be that simple at all as gp said!).

but, been back to work this week and it feels quite good to just get on with stuff and try to put all the pain/slow treatment frustrations and unwellness to the back of my mind for a few hours. Although knackered today as took DH to bus station this morning at 5am, off to heathrow for his USA trip.

Pavlov, I have to say that your female GP does sound more on the ball than your regular one. I have no idea what an elevated prolactin level means , I have only heard of prolactin in conjunction with breast feeding.

I suppose the only thing that you can do is not google panic - you don't have the blood test results back, so you don't know that there is a problem yet. But I do fully empathise with your despair about thinking what's next. I remember at the beginning of this year being told that I had, or might have, something different and horrible at each appointment I went to, and thinking Oh ffs why not just shoot me now! Hopefully your GP will get the blood results back to you ASAP, and not leave you in limbo.

I'm sorry that you are feeling generally yuck, and you do deserve a medal for taking your dh to the airport at such an unsociable hour . At least your work has been a positive experience.

Speaking with total hypocrisy here... please, don't panic. It sounds as though you need a prompt endocrinology referral.

Speaking of panicking, though... I've just weighed myself again and I'm already almost back to where I was before the bug. My guess is that I was just very dehydrated... is that possible? So BMI is now, er, 17.3... could be worse but obviously still not enough.

In reply to OYGGK (fab she's back ) question about how this thread can help... would you be able simply to encourage me to persevere? Each time I post either a success or a lull in motivation, would you be able to get the pom-poms out and cheerleadingly bounce around (from sitting position and/or wheelchair if needed)? With all the overweight people in this country struggling to lose weight, the task of gaining weight feels a bit like rolling cheese uphill.

BackPack? How are you doing?

Bmis in the 17 s not ideal, but not as scary :) do you like baking? I find it hard to resist eating my own cakes.

Pavlov, I hope they can get to the bottom of this.

I would jump up and down but dont want to put my back out even more , it is definitely possible to lose weight through lack of water, as when I have done excessive exercise and not drunk enough water through the session my weight immediately reduced by a small amount, went back up by end of the day, research showed me this was loss of water through sweat, so could well be that. I remember you said you like yoghurt, could you buy full fat yoghurt and eat that by the bucket load? you would put on weight quickly then I am sure!

thanks ladies. I am not so much panicking, more, fed up that my body appears to be declining suddenly. I suspected hormonal and have for a while as I have had lots of the symptoms, but did not really think that much of it, thought it was simple. It is not life threatening whatever the problem, it is just going to be a big faff to sort out and, once again, will take lots of time. I have always been pretty impatient type of person and this is so frustrating! I want it all fixed now.

Had physio yesterday. Hard work! i got pulled about and made to do lots of moving that hurt! physio was quite concerned at one point and was very sympathetic and did lots of shoulder patting 'you are doing well' with a frown on her face . She thinks there is a trapped nerve now. reflexes are fine but one foot seems to not be as strong as the other, plus severity of pain which she could see as I was sweating by the end of one of the more painful exercises! She thinks I need a further MRI but cant do it, thinks pain clinic is not enough, but says she will do her best to get me moving a little more. Also said that unfortunately they look for numbness and that gets quick treatment, she said that pain is actually good from their perspective, but understands that this means it takes much longer for me to get the things I actually need. She seems to get the severity to which my life is suffering, but as she rightly said, quick results is for medical emergencies not conditions that just stop you living normally. She was very apologetic that this is how is it. Anyway, she wants me back twice next week.

Thanks for the pom-pom waving? Now, does anyone have any ? I fancy getting so hideously drunk that I render myself unable to recall the events of this afternoon...

The GP's receptionist called to tell me that the consultant told her that he'd never made any plans to write to them or me with the follow-up information. Even though the consultant had told me precisely the reverse. Even though he'd assured me that he's put everything to me in writing.

So riiiiight, I'm supposed to just wait until the next annual follup-up without basic medical information about myself that is, like, a matter of life and death?

The GP's receptionist suggested that I talk to him or his secretary myself. I said that I've been trying to sort things out directly for the last three years and that the consultant always promises to phone me back and sometimes rings my husband but never me.

And I have quite literally lost count of the appointments and letters and follow-ups that have gone astray... often even when they have contained urgent information about life-threatening complications.

I've submitted a complaint through PALS and I've made an appointment with the GP to talk about changing consultants. I know I'll now get an angry phone call from someone else in his department, and I know the number it'll come through on, and I'm considering blocking the number...

oh that is awful! how can they NOT tell you it sometimes feels that people are just ticks on a box. we are their salary not humans who actually need some looking after, feel for you.

Offers in absence of

It is very annoying when consultants do not write to GP's. I would make a terrible GP for so many reasons. Firstly I hate it when people ask me for advice and then ignore it, which must be something that GPs endure every day. Secondly, I would get seriously cheesed off if specialists did not provide me with information on patients.

It's plain rude to not write to GPs, and is best practice to copy patients in on letters. I know that my GP was immensely frustrated when my surgeon didn't write to her, but I think that was probably an oversight rather than a deliberate decision not to send a letter. I can see why you are asking for a new cardiologist and complaining to PALS. I assume that when you see the fatigue specialist, she would want to know about your medical history, so YANBU to want your medical notes properly documented.

That is awful how can your gp offer you the best care without the information they need. You did brilliantly to complain to PALS. That was exactly the right thing to do and I hope they sort it out ASAP.

if your GP is onside and if not change GP as well it's reasonably straightforward to change consultants, and even better if you can go to a different hospital. We found with DD2 that no-one at the hospital would take her seriously until we rocked up at A&E with her having massive psychological/stress issues and basically cried over one poor registrar at 2 oclock in the morning because she was "being seen by Dr X", and no-one was prepared to take him on. He still won't officially "release" her, so we just don't go to that hospital any more, and I cancel all the appointments (with GP's blessing, AND she is being seen elsewhere I ought to add ).

Do you have another hospital nearby, or even better a specialist place? Get your GP to be cross about being kept out of the loop - how can they mange your day to day care if the consultant won't tell them what's going on? And hopefully either they, or someone else at the practice, will know of a better cardio for you, and will refer.

update from me - last lot of blood tests were all clear, echo still not till beginning September, BUT GP has referred me to cardio, so I have to wait till they get in touch. Unless presumably something shows up on the echo. So I still have the rest of the summer being unable to walk for 90 seconds without having to stop. Bit of a bummer really.

Mind you, took DD to the orthodontist at the hospital this week, she's been referred to another specialist who runs four clinics per year, so her next appointment to start discussing braces will be January, and then presumably another 3-4 months before any treatment starts. Maybe my wait isn't so bad after all...

Hi ISWM, I was wondering how you were getting on. I see that you are still in the limbo of waiting. Is there any chance of getting your cardiology appointment on the same day as your echo? The techs cannot give you feedback, but if you see a specialist straight after they will tell you what is going on, and if any further investigations or treatment are needed. It doesn't mean that the subsequent treatment will happen quickly (OYBBK has been waiting a phenomenal amount of time), but it's better than waiting weeks for results to be fed back to your GP or not as in BM's case.

Sadly echo is being done at my surgery, and cardio will be at the hospital, so not possible to combine the two, although that would have been a great plan. I'm cultivating patience

I feel as though I'm losing the plot again.

There are other two other sufficiently specialised cardiologists in the area that I could see, one at the-hospital-which-scares-the-shit-out-of-me nearby and the other over 90 minutes away on public transport. DH has just told me to stop being so ridiculous and that they're all as bad as one another anyway :( He's gone out now.

I'm back towards feeling that I might as well discharge myself outright and take my chances on the Russian roulette board, so to speak.

(About the fatigue consultant: I'd cancelled my appointment with her yesterday anyway. Not only because of anxiety but because mostly, at least, the fatigue is a lot better, most days. And as mad points out, it wouldn't have been the most thorough or valuable consultation with a chunk of my notes missing, anyway...)

BM, if you can, rather than cycling through the options in your head rapidly as I suspect you are doing, I'd try and take the time between now and when PALS get back to you as a bit of a pause where you gather your strengths and perhaps they will be able to sort out a reasonable solution. Give them a deadline of say Tuesday or Wednesday and then if you can, try and shove it out of your mind as much as you can so that your subconscious can mull it over. You've played your chess piece, its their turn now.

I'm having kittens (so to speak) about tomorrows TOE. I'd successfully shoved it out of my mind by finding lots of things to do and all of a sudden its here. oh dear. dh says its too late to let them know that I've changed my mind. I REALLY want a beer.

OYGGB many (((((hugs))))) and lots of chocolate for tomorrow. Have you had some yummy food this evening?

Really, you will be fine . Swallowing the probe isn't too bad, I'm rubbish at taking tablets and I managed it. You have been pre-warned about the banana tasting numbing spray think of listerine with a peculiar banana flavour. Personally, I found the TOE easier than the CT scan because you have people around you, rather than being in a room on your own.

I'm glad that your dh is being supportive, and this time tomorrow it will be over. Of course you haven't changed your mind! Maybe you will be nearer to getting some answers, hope you haven't got long to wait to see the cardiologist.