Length of time to get tests done

[Kat13]

After posting picture of my livedo ridicularis in early June, and listening to Mary's excellent advice about getting the testing for Hughes done, I had the tests as well as many others for vasculitis, thyroid etc done in early June. They have all come back negative except for one of the Hughes tests which was sent to the wrong lab. My rheum has said I will now have to wait until I see him in August when we review MRI results to have that test done (previously had cerebral vasculitis). This will mean a three month wait for all the tests results. This waiting is just getting to me. Any thoughts or comments?

[bowler]

I know just how you feel re "Waiting for tests to be done, and results ", I have been having tests and waiting for results since last Sept., for suspected W G, some results I now have, which are negative, however my last test was 4 weeks a go [ nasal biopsy ] and still waiting for results, maybe they are negative but it would be nice to know, I am sure I have W G and as I already take Steroids for GCA I feel I have come through it and in remission? even though I haven't been diagnosed, because some of my symptoms have eased, perhaps if I had had the tests done quickly I may have got a diagnosis, if that makes sense

[Kat13 in reply to bowler]

Hi there. Yes it makes sense! I think it's much better to know all that we are dealing with. Then when new symptoms pop up, we have a better understanding of what's happening. Thanks!

[orsen-trapp]

I don't know if it's any help but over the last 2 years I've learned to forget I'm waiting for test results/tests/appointments rather than counting the days. Early on I found I was not making the most of the days in between and in a sense I 'lost' those days. Just had another round of tests/appointments recently and they really are just another date in the diary along with things like 'make muffins for Monday'. Hope this helps.

[bowler]

Yes I agree to some extent, BUT with some forms of vascuilitis, or any other illness come to that which may need urgent treatment and is often delayed due to the waiting game/diagnosis, Several times this year my husband and I have decided we needed a break away for a few days, and guess what ? the long awaited hospital appointment/test has come for the same dates, do we cancel the appointment and wait another age for another, ??????? hope yo enjoy your muffins, I made choc. cake today

[AndrewT]

Dear Kat13,

Yes it CAN be annoying/irritating waiting for results but, and it IS a big but, if there was a serious problem they would contact you! I have had a Kidney Transplant, two years ago now, and when I changed hospitals-in December last year-my new consultant wanted me to have a scan. This was only done after he personally intervened, in the 'booking process': fortunately all was well. I have to say that this is, far from, the first time that I have had to wait for results.

Talking of appointments, that arrive, at just the 'wrong' moment....I, after some time in rehearsals, have to 'pull out', of A Christmas Play-in December 2014. 'They' did keep in, the re-write, that I suggested and also used the mask I supplied; so not all lost then. So, you see, you are not the only one Kat, far from.

What I'm really trying to say is-Try not to worry, too much, hard as it may be. Keep smiling (grimacing?) and walk tall-you have already beaten the 'odds' (we all have). We are all still ALIVE, how long were you 'given' to live? Hours, weeks, months I doubt years-how long ago? I'll bet years, even decades-in my case eighteen years.

So, as I often say, Chin Up Kat.

Love, and best wishes.

AndrewT

[bowler in reply to AndrewT]

I agree that if there was a serious problem, they should inform us, but that's not always the case, stuff gets missed, however they should also inform us if there wasn't a problem, the unknown/waiting is the worse.

[AndrewT in reply to bowler]

Dear bowler,

Yes, in an ideal world bowler, I quite agree-without being, in any way, 'funny' with-we don't live in one. I still maintain, that in my (and others) experience, if there IS a MAJOR problem the 'they' WILL contact you. Maybe I am an optimist, maybe-but I've every right to be. I'm still ALIVE, all thanks to my Doctors/Consultants, whose great dedication, knowledge, and care have saved my life! Do 'things' go wrong-yes of cause they do-does it happen often, NO IT DOSN'T.

Sorry if this sounds cruel/uncaring but....If you do have to wait, for results, or treatment, then wait-I do- we all do! I really don't mean this in a nasty way but, putting 'things' into context- certain, as I am, that 'everyone' IS doing their level best, please give them a chance chum!!!!!

Hoping that I haven't 'upset' you too much.

AndrewT

[bowler in reply to AndrewT]

No you haven't upset me AT ALL

I'm not knocking the care I have had from Addenbrooks, far from it, these postings were just about the waiting for results, that's all.

[Rachelle_Labelle]

I can relate to that. It is one of the reasons I wrote my books. From the doctor's office to surgery to drug therapy, there are too many instances of delays until the condition is so far along that it is much more difficult (at time too far along) to treat. It's mentioned in everything I write.

They ignore me, but I noticed since the since the early 1990, that some health care decision-makers have acknowledged the problem and some doctors will push and get tests and results through faster. Some decision-makers are streamlining their processes. Despite that, all too often the human element of incredulity, ignoring the patient's observations, limited training and mistakes still delay and impede good health care. Personally, I have become a squeaky wheel; annoying but gets results. They don't have to like me; they have to make be well.

Rachelle

[Kat13 in reply to Rachelle_Labelle]

Hi Rachelle. Thank you for your response. I would be very interested in getting your book. Could you send me title and publisher. Thanks

Kat

[Rachelle_Labelle in reply to Kat13]

All my books are available online at rachellelabellesbooks.com.

This includes "Microscopic Polyangiitis. We're Not Lazy. We're in Agony!!"

At the reasonable price of $5.00 Canadian.

Thank you for your support.

Rachelle

[AndrewT]

Dear Kat13,

One thing you could try-it must be worth a 'shout' anyway-is to tell your consultant how worried you are. Really, really lay it 'on thick' (you can do it-tears work a treat). Hopefully your consultant will lean on the right people and, not to suggest that they can move mountains, suddenly the results are in!

In any event, I-all of us-wish you luck.

AndrewT