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...

that was a bit long.

OYBBK, I'm so pleased that you now probably have a diagnosis. Even better that it's one which is not life threatening. Yes, it will need constant management, and there isn't a an easy cure, but the fact that you now know what's wrong with you is brilliant .

Roll on the TTT. Will it show up the POTS if the medication is effective at controlling your symptoms?

OYBBK - DD2 has PoTS (part of her Ehlers Danlos) - have you found [www.stars.org.uk STARS]] yet? Their conference last year was brilliant, and this year's one has more sessions on PoTS as well.

When DD had her tilt test, she had to stop all medication for 7 days beforehand (she's on fludrocortisone, was recommended ivabradine after the test (but the doctor wouldn't let her have it as her ecg - done while lying down - was normal - well duh!), ad may have midrodine as well/instead), umm that was too many brackets...

Anyway, you have to stop medication before the tilt test, otherwise it will affect the results.

Have you also had the increase salt, drink more water advice? Also DD was told by the tilt test nurse to tense her bum and thigh muscles and hold for 5 seconds as often as she could. Keeping calf muscles as toned as possible is also good (as the calf muscles help constrict the veins, and keep the blood moving), so lots of walking, dancing, that kind of thing.

I'll have to come off the meds for the TTT, but I forgot to ask how long for! I was so pleased to have someone who was willing to give treating me another go that I was a bit flummoxed. I have had a couple of different diagnosis on route to this probable one, but this one just makes so much sense. If the TTT def confirms it (and probably even if it doesnt) I'm going to ask for a referral to a POTs specialist.

x-post with ISWM :)

Its interesting that you say about ED, I dont have that, but i am according to my rheumy and a couple of physios, I am hypermobile.

I've been reading up on the STARS website. Its great. Useful to know about how long to stop the meds for. How has your dd found the fludrocortisone? Has she started the midrodine?

I've been doing the water and salt thing, but I think I could increase them even more. Fortunately I crave salty food and have done for years. Its a bit ironic that after I went into hosp I really cut down my salt intake as I thought that would be good for me until a gp spotted the low blood pressure. Those bum excercises sound useful. I've been told to try and increase my excercise but stop as soon as my hr rises too much, which was pretty much as soon as I started anything. Hopefully the ivabradine will help.

How is your dd doing now?

This is going to sound really stupid, but a couple of hours after I've taken the ivabradine, my head feels clearer - less dopey.

DDs appointment letter told her when to stop taking the meds.

Where are you based? If in the SE, then the person you want to be referred to is Professor Matthias at the National Hospital for Neurology and Neurosurgery/ St Marys - he has a stupidly long waiting list (10 months or so for NHS, 6 months or so for private), but his clinic is apparently brilliant. Look at www.hypermobility.org in their discussion forums for a really really long thread about him and his clinic. People are travelling from NE Scotland to see him! They do a three day stay for incredibly thorough tests (put you up in a hotel for the nights), then send you back to your local doctors with instructions for treatment. Depednign on how things go with DD over the next few years, I'm hoping to time a referral to him to coincide with her 18th birthday .

DD was diagnosed with EDS because of the PoTS and being hypermobile, her consultant reckons that hypermobility becomes EDS when you have problems with it (generally joint pain, but in her case the PoTS), but lots of other rheumies don't agree that EDS=JHS. The fludrocortisone stops her feeling quite so dizzy, but she faints maybe once a week on average, more when she gets stressed, but not all the faints are PoTS ones, she also has problems with her brain misreading signals from the body, so can faint at sudden noises without a drop in BP/rise in HR -at Christmas she sneezed and shocked herself into a faint which was quite amusing at the time. It's been really hard though, particularly as school get a bit lot panicky about her (lots of stone corridors and stairs, metal lockers, very big campus), and we've had to fight quite hard for her to be allowed to do things (like DofE). Plus she gets really cross about being ill, and that combined with teen grumpiness and angst is hard work at home.

interesting about the less dopey - DD suffers a lot with "brain fog", also being very very tired, but yet unable to get a full nights sleep. She never wakes up refreshed. Ivabradine isn't licensed for children, so we'll have too see what her new doctor says when we see her in a fortnight.

It must be really hard for your dd to try and lead a normal teen life with such severe symptoms. Poor love. I can imagine it must be very hard on you all too, teens are very hard work without added chronic illness.

I'll have a look at that thread. I'm only an hour out of London and he sounds like just the ticket!

You know, I've always put my extreme tiredness down to just being a moaner and generally considered myself pathetic - that perhaps everyone is this tired. (and also put some of it down to the psoriatic arthritis, which I refuse to let interfere with my life) so I've forced myself to carry on even when I've literally had to crawl up the stairs.

Whenever I've been for days out I wondered why everyone else is up and around and admiring museum exhibits when I just have to cruise from bench to bench because standing is so tiring and yet I can walk long distances at a gentle pace. Perhaps its not down to an overactive case of patheticness?! Blimey. I might have to be nice to myself a bit.

read somewhere that with PoTS your body is working 10 times harder than everyone else's just to stay upright, so yes, you do need to be kind to yourself .

no wonder I'm so skinny

maybe I'll suggest to DD we share her PoTS, then I can manage to lose some weight (bloody PCOS makes that hard enough).

kitten That's really encouraging news, especially as so much within cardiology is so potentially life-threatening and POTS, whilst chronic and hard-to-manage, isn't. As a diagnosis it makes a lot of sense too given the association with hypermobility... aren't autoimmune forms of athritis sort on of the same continuum as EDS?

ISWM Again, encouraging news. Glad the echo went well...

Reeny lots of unMNlike hugs. Why is it that you keep, keep getting these infections? Is there anything that can do investigated/done to ensure that you don't get any following the spinal op?

I had a phone call from the hospital-from-which-I-have-just-been-discharged today. Apparently I was right that yes, a letter I had been promised has gone missing again and no, I didn't fabricate/imagine it and yes, the letter will now be written and sent.

I have a house currently full of family and in-laws and what seems like hundreds of children... I'll be back properly when the laminate is less sticky...

That's sort of progress BM. I had wondered where you were :) hope the visitors aren't being too wearing.

From what I've read pots can be associated with auto immune conditions too though PsA isn't specifically mentioned. I'm off on my hols tomorrow, which should give me a bit of time to digest the info. I've packed salt and isotonic drinks to try and help.

Sounds like good timing for the holiday. You're going somewhere with some quite nice food, too, if I remember? I really hope, though, that you'll be OK to get around and enjoy the sun and countryside and do some sightseeing.

BM - Enjoy your chaotic full house. It will be very quiet once they have all gone, and all you will have is the mess and sticky fingerprints, although I'm sure your own dc can add plenty of that themselves.

I'm glad that your previous hospital have fessed up their mistake, everyone loves being proven right, and knowing that they aren't going crazy. Hopefully the next hospital shall be a lot more organised, and you will only need to pop in for a check once a year. You seem pretty healthy at the moment, so that doesn't seem an unreasonable aspiration.

OYBBK, enjoy your holiday. Have lots of lovely food, a little , plenty of water and just relax in the sun while we enjoy the lovely British weather. Very for you.

hey everyone
reeny hope you are feeling better and have started to recover from your horrendous infections. what a horrible time you have had

ISWM glad you have been give the all clear re your heart. as already said by others, it is not great that you still don't have a diagnosis but one thing is ruled out at least. Are you feeling any better at all and able to enjoy some of your summer with the children? (i say summer in the loosest possible terms!)

OYBBK blimey! so is this POTS connected to everything else? or is it completely seperate?

BM how is your eating lots of donuts/chocolate cake going? i have not noticed any recent glad they finally confirmed you are nog going mad and admit their error.

Sorry if I have left anyone out.

I am in a LOT of pain. Had physio. proper physio. saw different person this time, the woman I saw was out of her depth really, so she asked her colleague to see me. Turns out it was him who advised spinal pathway referral, and signed off the physio completing once my GP agreed to support it. He said that had this not already been done he would certainly be doing it today after seeing/assessing me more fully. He was much more to the point than the other, very confident in what he was doing, no messing. He said i am in pain anyway, so i need to just be aggressive with the physio, and ignore the last exercises, they are not direct enough. He pushed really really hard on my lower spine/into the nerve cavity area, and made me do pressups while he did it . he told me it would hurt afterwards, and i would be cursing him and I bloody well am! I cannot walk well now. He said I have to get myself back into standing position, no matter how much it hurts/how hard i have to work to do it, as if I don't, all the drugs/injections/surgery will not work. I have to do 10 pressups 4 x a day . He thinks assessment next week will likely include requesting further MRI. He also told me there were lots of things to consider yet, this is not the end of the road, i have a good healthy spine other than the disc/dehydration/bulges in that I don't have stenosis/arthritis/severe bulges so in terms of a starting point, i am in a better place than many. Also told me he would not expect me to be feeling any different in terms of struggling to walk/pain at this stage as the acute phases can take 4-6 months to come out the other side of it has been 2 months since this new acute phase . He said he will be seeing me again, but to see the other physio for the next few sessions and we will meet up again after my assessment and plan has been decided, which makes me think he is a senior physio? do you get hierarchy in physio?

Sorry long post.

oh and DH came back from swimming with turtles and kayaking down rivers in hawaii to the real world with a bump on wed evening - rain, kids going wild and me hobbling/shuffling, but we survived without him reasonably ok, just glad i did not have this type of physio until today, could not cope like this on my own today.

Pavlov - I'm glad your dh is home from his holiday/working trip. Swimming with turtles - . We haven't had much rain here, it's been blisteringly hot, and I'm cowering indoors like a pale thing.

Your physio sounds tough! I wonder if he has a military background . All credit to you for doing to press ups, while he was pushing down on your back. I would have turned into a lump of jelly quivering on the floor. Now you have to do 4x10 reps per day, so you must be very fit.

All the best for Tuesday. I hope you get to see some people that help you make sense of the pain, and even better have an idea of how to treat it .

My good news for the day is that I have finally stopped bleeding!

ouch, physio sounds HARD .

In news. my "urgent" cardio appointment date has come through - for four months after referral . I know it's probably not needed, but they don't know that. Anyway, I'm back to the GP next week sometime to check what he wants me to do re the appointment (now that he's seen the echo results), and get him to chase the chest clinic appointment - hopefully that's not going to be four months from referral as well - I can't manage for that length of time being unable to walk any distance.

ISWM my good friend who is a nurse, she says we are called 'patients' for a reason, because that is what we are! very at 4 months being 'urgent'!

teamgb press-ups in the loosest possible terms! i have to press my legs/hips to floor and lift on elbows to start, then when I am able, on hands, my top half so my arms are stretched. I was a quivering wreck when I did them at physio, my arms have turned to jelly since I stopped the gym! He has assured me that while it will hurt, it will help. He said basically, I am going to hurt. But, as I am hurting anyway i need to accept some pain, better pain with a purpose than without. I get that.

Woohoo for the break, how long til its due again...this week?! make sure you keep up your iron intake if you are not going to have a bit break, as it has been constant it will be draining on your iron levels I would think.

Well this is my first MN post from a surgery lavatory. I knew that finally getting a smartphone could be a very bad idea for this very reason. And I know that last sentence was semantically dismal and I. Sorry if my rantings are worrying anyone. I'm OK. I just wish I could go to sleep and wake up never needing to set foot in a hospital ever ever again. I just wish that SOMEONE in the medical profession would believe me...

What's up BM?

I didn't see your last post but .

Are you at thehospitalthatterrifiesyou?

I know what you mean about wishing never to set foot in a hospital again. I'm at hospitals tomorrow and next week for dd1. Although both appointments are routine follow up, it's still possible that things you don't want to hear will be heard.