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

(447 Posts)
BreastmilkDoesAFabLatte Sat 16-Jun-12 10:21:16

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...

PavlovtheCat Sat 16-Jun-12 12:20:43

<waves> marking my place. And wanting to thank you all for the the virtual MN A&E that you have provided to hold my hand recently, accepting me easily as I embark on the journeys through the medical system.

Ohyoubadbadkitten Sat 16-Jun-12 13:04:52

Splendid introduction to the new thread BM smile

BreastmilkDoesAFabLatte Sat 16-Jun-12 13:22:44

<wonders how mad will respond to being quoted>

Madsometimes Sat 16-Jun-12 13:58:46

blush

Just to add that this thread is also for anyone suffering from general decrepitude to moan in a supportive and non-judgemental environment.

<Shuffles off>

BurningBridges Sat 16-Jun-12 22:19:55

Hello everyone - I'm a lurker! I've been lurking around since this thread started, in fact over the last 11 months I've gone from being utterly normal and boring to having a range of mad symptoms, mostly dismissed by my GP as being down to fat. Once she actually told me the reason my stomach was swollen was my fat had moved. So be careful, you could wake up tomorrow with a 6 pack and a 6 stone leg.

Anyway, my latest referral was to a rheumatologist and I went on Friday expecting more quips about my fat moving, only this guy didn't mention that, but he did get all my previous test results up and say he wasn't happy, and saw my spine x-rays which GP had said were "insignificant" and he sent me off for tests with the word "Myeloma" written on the form. So I looked it up, and lo, I have the symptoms and blood test readings over the past year for this rare form of bone cancer.

Now, I don't really believe that I have this type of cancer, or any cancer, but its been my fear as I have had such odd symptoms, and been fobbed off to within an inch of my life, no pun intended, and no one was taking me seriously, but this new consultant appeared to know exactly what I was going through. He was a shrewd cookie.

So I had the new blood and urine tests yesterday and went away to await my appointment for a bone scan - not sure if anyone is familiar with this its the one where you have radioactive dye into a vein, you have to go away and wait for 3 hours then they give you a scan in a bone scanner - its not quite like an MRI its not a tube, more like a small x-ray machine. Its part of the nuclear medicine department.

So I thought well I'll probably wait months to get that test now. But bearing in mind I walked out of his rooms 11.30am yesterday, my appointment came in the post today. I'm still calm. I am thinking to be honest there is probably not much call for it. I can imagine the bone scanner person sitting there, stirring their radioactive potion, dangling their legs off the scanner bed, looking glum, then all of a sudden my records flash up and they say Aha, get this one in and we'll fill 'er up. My appointment is for 25th June.

I am still not panicking, going to call x-ray office on Monday and ask some questions about the procedure, and sort of idly say, oh btw that was a short wait! Was the form marked "urgent" by any chance?

So that's my story. And I am now officially unlurked. sits back, gets comfy

BurningBridges Sat 16-Jun-12 22:21:35

gets wine, realises that post was excruciatingly long blush

PavlovtheCat Sun 17-Jun-12 07:57:06

wow, you are incredibly calm for someone who has been put through the mill for so long. it makes me very cross that gps are often not proactive. but, then I had an experience at work where I realised that sometimes, people see things with a client over a period of time and they see those things as isolated things, they just don't ever join the things up, no lightbulb moment of aha that plus that and that could equal this. Sometimes it takes an fresh pair of eyes. I work with criminals, and part of my job is to assess behaviour, and if risk increases panic manage that. A colleague of mine had lots of little bits of information at hand over a period of about 8 months, but each thing was not huge. When the case was downgraded in risk of harm it was passed to me, I read the whole file, and all these little peices fitted together, plus one tiny weeny bit of knowledge I had that was not a professional bit of knowledge, but a local bit of knowledge that the other person did not have and I went shock and not only did his risk raise back up, but it went past the original level of risk and straight to 'very high risk of harm' which meant, like he could kill someone NOW! I only go on about this because i am anal about my talking about my job it reminds me that people need from time to time to refresh their cases and remind themselves of what has gone before, including GPs.

brew that was long too.

BurningBridges Sun 17-Jun-12 09:04:42

Hello Pavlov - I know what you mean. I used to work in an area that meant gathering evidence and then seeing the whole picture, it does discipline the mind wonderfully. Actually I was wrong last night, it isn't bone cancer as such, I think its in the bone marrow, so it has something in common with leukaemia. I would not have expected the GP to think "aha, myeloma?" but I would have expected her not to be so dismissive and to see the pattern in the blood tests. I've had to pay privately (part insurance/part my money) for my all referrals except this one, and she even had the cheek to look a bit hmm when I said I'd run out of cash so I needed an NHS referral, so it was a battle to get to this stage.

Unfortunately, my DD aged 11 has also just been diagnosed with a rare congenital condition, life altering but thank god not life threatening, and you know, the GP (another one in the same practice) tried to persuade me that her stomach pain was because she ate too much fatty food. I think they are literally obsessed. Perhaps they need a bacon sandwich. And to keep looking and learning - too many GPs are arrogant and feel that there is no need for them to keep reading and researching.

Luckily for DD we had a fabulous paediatrician and he's been on the case all the time, rings me at home to talk about it etc. I feel my new rheumatologist is cut from the same sort of cloth.

I do feel calm. I am the sort of person who goes to pieces over a bit of toast falling butter side down on the floor, but calmly deals with major crises (what is the plural of crisis?!).

That was long as well - I seriously think someone else needs to join in today, I can type for England if not stopped! So - how are you today Pavlov, and what sort of day are you having?

Madsometimes Sun 17-Jun-12 18:08:27

Hi Burning, and welcome from lurking. You must be having such a stressful time, so I'm really pleased that you do not have a long wait until your bone scan. I think that doctors tend to move fast at the slightest suggestion of cancer, which should explain your quick referral. I'm glad that you now are under a doctor that understands your condition, and hopefully you will not be kept waiting long for the results. I'm quite shock that your symptoms were initially dismissed as a weight problem, and love the moving fat. I wish my belly flab would move upwards to my boobs wink.

GP's are interesting. Mine is very good, but they are not created equally. When I moved into my street, I asked the lady next door if she could recommend a GP surgery, knowing that her dh was a GP (not local). Her recommendation was not to go to the nearest one, but another one. She knew her stuff, and I haven't looked back.

Ohyoubadbadkitten Sun 17-Jun-12 20:26:27

You've had a real battle to come this far with your diagnosis. It is good that you are feeling calm, at the moment, it is still just a thought in the consultants head and because he is considering it as an option he does need to speed everything through. However, he may well be wrong.

I'm sorry to hear about your dds diagnosis, but it sounds like she has the right Mum for the job!

gingerwine Mon 18-Jun-12 21:01:57

Evening ladies.

Welcome from lurking Burning. What a long time you have had to wait to get to this point. You do sound quite calm even if you don't feel it all the time. As Mad says any referral to do with cancer is dealt with quickly and rightly so. It doesn't mean of course that all of these end up with that diagnosis. Also agree that GPs are very variable. The practice I go to has a large number of drs so I tend to choose different ones for different things as they all have their strengths. My parents in law's GP on the other hand works in a single handed practice and should probably have retired about 10 years ago. The things he says and neglects to do make me furious! I can't see him carrying on for much longer as the annual appraisal system and new revalidation system are pretty stringent in terms of the amount of ongoing training Drs have to do these days. Yours do seem to have gone on one too many healthy weight and diet courses though. Moving fat!!!!?

I wouldn't worry about long posts, mine can be quite lengthy! Have a wine, even though it's only Monday!

I have been to the cardiologist today and was sent off for a very detailed echo beforehand. The device is sitting where it should apparently and is stable. All looked ok. I can't say I am any happier about having it there but I think that will take me quite a while. There really should be some sort of counselling for people who have things put in their heart. It is very disconcerting. Anyway they are happy that it looks ok but of course that doesn't explain why I have odd pains in my chest and between my shoulders. Cardiologists advice was pretty sensible though - if it is nothing it will go away, if it persists for more than a few weeks we should do a TOE. I am now really hoping it will all settle down!

Hope everyone else is doing ok and has found the new thread.

BreastmilkDoesAFabLatte Mon 18-Jun-12 21:54:45

Hi Burning... good to meet a lurker, but sorry you need to be here. Crises is the plural of crisis, and I'm really sorry you're in one. But as others have said, everyone presenting any suspicion of cancer is fast-tracked through: you may not have cancer.

ginger It's great that the device is OK but I think I maybe understand how you feel... being told everything is OK doesn't take away the feelings which come from having had something done to your heart. Now that the Prozac seems to have taken away some of the chest pain I'd been having in the weeks following my surgery, I'm coming to believe there is a psychological element to the pain.

I agree with what everyone has been saying about the value of a good GP. I saw my fantastic one for the last time last week, and I'm still really gutted to have lost her. Really, though, I'm feeling better than I have in several years. But I've been on enough forms of medication in my life to know that it is early, early days with the Prozac, and that the chickens I've been counting have perhaps yet to hatch...

How's everyone else?

gingerwine Mon 18-Jun-12 22:10:03

Ooh yes BM, sorry I forgot to ask about the Prozac. I'm so glad it seems to be working. They should really put that stuff in the water supply. I have also wondered about psychological element. I wonder if I should wean myself off the amitriptyline (as it's not really sorting nerve pain anyway) and ask for some Prozac and something else for nerve pain. Does anyone take pregabalin and if so what are the side effects and does it take a while to get used to?

PavlovtheCat Mon 18-Jun-12 22:36:24

ginger just been prescribed pregabins sister drug gabapentin for nerve pain, as an alternative to amytriptiline. Only on day 3 and titratingmthemdose upwards so hard to say if working, still have seem nerve pain, told it would take a few days to make a difference, but side effects are quite strong for me - groggy, slurring/slowing of speech, cloudy brain. But I have been promised this will stop or reduce as my body gets used to it.

I think sometimes with medication, you need to change it from time to time as your body builds a tolerance/resistance to it.

Sorry, for not posting been lurking, but not much energy to type. Will do so tomorrow x

Madsometimes Tue 19-Jun-12 11:58:57

Ginger I'm really pleased that your echo yesterday showed that your device is behaving and sitting nicely where it was put. I know it means no answers about your pains. I'm with you on not liking artificial implants in the heart. Who needs to be rational when we are human smile.

BM, I'm so happy that things are turning a corner for you. The Prozac does seem to have upped your energy levels.

Mharhi, hoping your op goes well today. I think Reeny is also in today, so best wishes to you.

I'm doing fine, apart from my INR taking a cheeky dip to 2.0 (should be 2.5-3.5). Below 2.0 and I would be on clexane injections which sting, so I'm pleased to have avoided them. My INR often dips just before my period, I don't know if that is a known thing or just me.

Ohyoubadbadkitten Tue 19-Jun-12 15:01:58

Ginger, that is good news, though of course i'm sure you would rather have been given completely the all clear. But it sounds like yo have a sensible cardio.

BM, I'm glad the chest pain is settling - the mind is incredibly powerful, but I think that prozac can also help with neuropathic pain.

Naughty INR Mad - hope it picks up again.

Pavlov - dont apologise! I'm impressed with your power to carry on as much as you are doing. Lots of rest for you while you get used to the new meds!

Saw lovely gp who was a great listener. Shes given me a fitness to work note - stating I am fit to work (yay!) but need to not stand up for prolonged periods or do anything vigorous.. Question is - do I hand it in while I'm waiting for my contract? I'm seeing it as a positive note, cos I know that I can still do a good job albeit doing it while sitting down, but work may not see it so positively. What do you reckon?
Theres not much more I can do to help myself in the meantime, but she reckons I ought to make sure that when I go away I can get to a hospital easily and have a phone on me at all times.
Funny, I didnt really learn anything new at all, but it was really reassuring to talk to someone professional about it, so I feel much better.

BreastmilkDoesAFabLatte Wed 20-Jun-12 19:18:55

Whether that note would improve your chances... I could see it both ways. On the one hand, yes, some workplaces can be shockingly unthoughtful towards those with physical limitations, but on the other hand, some workplaces would be glad to know so clearly what a valued employee can do... I suppose it depends upon the people involved and the relationship you have with them.

The GP sounds really good, though. Those who possess the ability to listen have a very special skill...

Ohyoubadbadkitten Wed 20-Jun-12 19:51:08

I handed it in. I figured that if I didn't I would be doing them a disservice. If I did keel over completely it would have been very unfair for me to have withheld information. Also, I took it as proof that I am perfectly capable of going to work.

gingerwine Wed 20-Jun-12 21:45:02

I think that was the right thing to do OYBBK. As you say it is a fitness to work note not a sick note. I think they would have to be very careful about not renewing your contract unless they had other genuine reasons. I also have a fitness to work note which states altered hours as I am still very tired at times post stroke and my achey leg and arm are worse when tired. I do feel guilty when I am at work as I know that some of my work is having to be covered by others but I am sticking to it for now. I only work a little in school holidays so I am hoping by September I will be feeling up to trying my normal hours again. Otherwise I will have to alter my contract if work agree. Problem with that would be it might be difficult to get those hours back later so best to hang on as we are for the time being. I really hope you find out about your contract soon. Any idea when you will know?

Sorry to hear about your INR Mad. I wonder if that is your body trying to minimise blood loss each month.

Pavlov - hope the gabapentin is going ok. I'm still a bit undecided. Might go to GP next week maybe. I think I can manage a week of feeling drowsy etc, if I planned it right. But am a bit worried it might go on for weeks. Ultimately I suppose I also resent the fact I might need any medication.

I have done some exercise!!! I think seeing my heart functioning ok on Monday has relieved my anxieties about exercising and I went off for a gentle swim. Feel very proud of myself as not really been for ages and used to swim regularly.

Hope everyone is ok and those who've had ops this week are doing alright. I think of you all quite a lot. I know it's been said before but thank you everyone for such a supportive thread.

PavlovtheCat Thu 21-Jun-12 10:42:59

oybbk I agree that you did the right thing, as you say, you are completely honest and if something happened they have all the information.

ginger I have titrated my dose to 300, for one day only, and the drowsiness is easing slightly already. I have spent several days mostly asleep shock but yesterday and today I feel ok, little tired but ok in terms of the drug at least, my sciatic pain has eased a lot, so think this might be the drug starting to work? it might be that this phase is easing anyway, really not sure, but time will tell. All in all the side effects seem ok, but its only been just under a week so we will see, but I would say if you can get over the tiredness then give it a try.

mad sorry to be blush but what is INR?\

I am off to see the osteo today, with an arm full of questions, on tues I was in a LOT of pain and asked to see him, he could not fit me in early, and said there was no point as if in so much pain it would make it worse to get to him and there was little he could do right then to ease, that I needed to rest and maybe use an ice pack. Typically today, when I finally get to see him, i am feeling an awful lot better than I have been and can almost stand up straight. But I am worried that this is due to the amount of painkillers I am on, and that he will therefore dismiss it as all ok now, this acute episode is improving, rather than it is all being masked.

Madsometimes Thu 21-Jun-12 11:37:15

Pavlov, you really have been though it with the pain. I have lurked but not posted on your other thread, and you are having a bad time of it. I hope the you get some joy today. Are the osteopaths that you see also doctors, or have I completely misunderstood?

INR is a measure of how quickly your blood clots, compared to an average. A normal result is about 1. A result of 2.0 means that my blood takes twice as long as average to clot. I take warfarin because my mechanical heart valve increases the chances of clots forming on it, which could lead to a stroke. The target range for my valve is 2.5-3.5, preferably around 3.0, so when my INR dips my risk of stroke is slightly increased. Warfarin is a Vitamin K antagonist, so diet can mess with INR, medicines - both prescribed and OTC, alcohol, but so do random things like activity levels because the drug is cleared by the liver.

Tomorrow is the date that I declined for my ablation. My period started today, so very pleased that I got that right. Tomorrow I will be changing my mooncup hourly.

OYBBK, I also think that your fitness to work certificate should be seen as a positive thing. It says that you can do your job, and in my view that is key. I just hope your work hurries up and renews your contract.

PavlovtheCat Thu 21-Jun-12 12:22:33

hey mad i see about the INR, so 2 is not great, has it gone up again now? that must be quite frightening and difficult, to manage your every move/diet etc to ensure it stays at the right level.

the osteo is where i was referred as the 'pain clinic', but, funnily enough they cannot adjust my meds, only my gp can do that, so they say. He is an osteopath, that is his profession and also acupuncturist, his title is Dr, so guess that makes him one. His boss, who deals the MRI referral and administering of injections etc, he is a GP too. I think, but will seek claification today, that when my GP referred me to these, he did it to the pain clinic, which is based at another GP surgery, but that I am seeing them as part of the pain clinic. I do not really understand, thought I did, but now not sure, why I was referred to osteo as part of it, seeing as NHS seem to see osteopathy as complimentary alongside other medical practices. I need to discuss with my gp really, who is on leave.

I have very little idea really who I am seeing or why. If I am completely honest. I personally suspect I was referred to this person as he is a friend of my Gp as he refers to him by first name.

Madsometimes Thu 21-Jun-12 13:05:33

That is really confusing, Pavlov. I am in favour of osteopathy, and my husband sees a chiropractor for shoulder problems, so I have no problems with complementary therapies. However, if I was referred by GP, I would want to know if I was seeing a medical doctor or not, just because I always want to know everything. A normal osteopath would not be able to prescribe, but I suppose could be titled Dr if he had a PhD. Actually great that the NHS can refer to osteopaths, but you should be told.

Warfarin takes a few days to get into the system, so I will test again next Monday. I'm not too worried, because it had only dipped for a few days. It's more of an issue if it dips for weeks at a time.

Madsometimes Thu 21-Jun-12 13:09:07

Of course, there's nothing to stop a medical doctor from becoming an osteopath...
A friend of my mum's is a GP and acupuncturist, but osteopathy is a 3 year ft course AFAIK.

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