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  1. #321
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    Hi Tigerlilly, I think Dr M Check more things than your list above. I am glad you have better day today.

    Hi Jojo, I don't have gen match, so I don't know much about it. But I know it treatable by Dr M, just expensive. You may need more than lit treatment for it.

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    Jojosniss  (24-09-2015),tigerlilly9772  (24-09-2015)

  3. #322
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    Quote Originally Posted by tigerlilly9772 View Post
    Hi jojosniss, same here. New to all this and drowning in befuddlement. I've just ordered Alan Beers book as well, and hopefully it will come within the fortnight. I'm a patient of Dr Nicks associate at Monash. Had plans on switching to Dr Nick, but decided to stick with mine for now (he IS lovely) and consult Dr M in Sydney about the test results and see what he reckons. If my FS even bats an eye he will be told to get over himself, as he could have saved us 9 months and another round of heartache if he'd been more openminded last Dec when I asked about immune stuff being a problem!!!!! Doctors....ugh.

    Hi girls,
    I'm still in a deep blue (blue-black, really) funk, but am trying really hard to climb out.

    Can anyone recommend a good counsellor/therapist/psychologist/psychiatrist in the greater Melbourne area (I'm in So. Gippsland, 3.5 hours s/e of Melbs, so have to travel for everything anyway)? I'm hoping to see someone who's got some interest in coping with infertility failure and grief (but am open to someone who's at least empathetic). I'm having a lot of trouble coping......obviously......and I don't know if I need just some impartial talk therapy......or maybe something a bit more in depth......like maybe an antidepressant as well. I'll be honest, I've really been struggling the last couple of years with the grief and sadness from repeated failed treatments...... but apparently it's gotten chronic. My husband and mother "ganged up" on me last night after a fairly teary moment (moment out of nowhere, no identifiable triggers involved). In the meantime I'm trying to remember what I found interesting or fun before infertility and childlessness sucked out my will to live. I feel like it was another lifetime. I have found words with friends and you can play the computer and I won......so I'm obviously not as thick as I thought I was. There's that.

    Have spoken to Dr Ms office about the consult. Next consults were 15 Oct, day before my endo biopsy. Debbie(?) and I both agree it's best to wait until we've got all the results back from the tests my FS has organised, including the endo biopsy. she's sending me all the new patient forms to complete, and then they will get back to me with the next available date for phone consults. I'm assuming he does them maybe every couple of weeks....? I didn't think to ask, and I feel silly calling back. I'm assuming it's going to be around end of Oct.....? Trying not to get too ahead of myself.....but thinking there is no way I'm going to get back to Zlin in 2015, even if we do have a financial windfall.
    Initially had March 2016 pop in my head, so I guess that's probably about right. 6 months. Sigh.

    Speaking of tests.....below is the tests my FS ordered. Does that look about right for the first round??? I felt maybe there should have been a lot more.......perhaps I expect too much.

    Anyway, looking forward to the book. I'm hoping it will help me get some clarity on this new mess, and find some hope for the future. Xx
    @tigerlilly9772 I dont have anything eloquent to say but just know you are not alone... 8 year journey for us, my husband has been working away for the last 3 years to afford treatment, and it feels like we just keep getting stomped on over and over again... just keep talking to us, to your DP keep communicating xxx

    I have seen a lovely psychologist since my ectopic in 2010 her name is Judy Biro she works in Malvern, get a mental health plan from GP and you get sessions cheap xx
    http://www.glenferrieroadmalvern.com...php?shopID=320

    We got our PGD results back today, only 1 blast is normal.... Now to figure out whether we do a FET or maybe another EPU... im all confused with these NKC and protocols ... so much $$$... just wish the answers were easy and it didn't feel like we were gambling... I want to ask DR LB about intrapillids, find out what my scratch results were from July... but also keen to do FET sooner than later that way we can maximise treatments before the end of the year?! Hate that it comes down to money too... so frustrating.

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    tigerlilly9772  (24-09-2015)

  5. #323
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    Quote Originally Posted by Miss Sagi View Post
    PS. Bubbies are doing really well but will be in the special care unit for a few more weeks.
    Congratulations, so glad to hear bubbas are doing good

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    Miss Sagi  (24-09-2015)

  7. #324
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    HUGE congratulations Miss Sagi, how wonderful, very happy for you! xxx

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    Miss Sagi  (24-09-2015)

  9. #325
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    Quote Originally Posted by Littledragon 2013 View Post
    Hi Tigerlilly, I think Dr M Check more things than your list above. I am glad you have better day today.

    Hi Jojo, I don't have gen match, so I don't know much about it. But I know it treatable by Dr M, just expensive. You may need more than lit treatment for it.
    Thank you for your words Littledragon. We are seeing Dr Nick in Melbourne so fingers crossed
    ☺️

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    tigerlilly9772  (24-09-2015)

  11. #326
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    Hi ladies,

    thanks for the spirit boosts and the tips. I will look into Judy Biro, see if she can help me.

    Well.......I don't know if I'm in the right group (again) or not. I asked my FS to email me copies of my blood test results. All are back in.

    All are normal.
    No presence of antinuclear antibodies.
    Cardiolipins IgG and IGM both came back within normal range.
    No detection of celiac.
    HBA1C came back within optimal range.
    Thrombophilia screen all within normal ranges.
    Lupus anticoagulant not detected.
    Thyroid function test normal and thyroid antibodies well under the cut off point. Vit D levels at 88 (were 35 in July 2014).
    Factor C Leiden mutation not detected.
    Prothrombin G20210A mutation not detected (I assume that's the MTHFR?).

    I still ill have to have the endometrial biopsy, on 16 Oct. Is it possible to have NOTHING wrong except NKCs in your uterus?? Like not have them in your blood but in your uterus? Somehow I just don't think so, but I don't know. I hope so.....I'm hoping my uterus is riddled with the damn things. At least that would be something to treat. If there's nothing to treat.........sigh......

    Since he's not an immunology specialist, I don't really care what my FS has to say about the results. I have booked a phone consult with Dr M scheduled for late afternoon 15 October. I want to see what he has to say about these results, and see if he wants to send me for more/different bloods. I'll then have a follow up to discuss the findings of the biopsy and any other bloods he sends me for. I am really hoping that he looks at my results and sees something I don't.

    I wish I could say I'm surprised nothing came back......but I'm not......should have known it wouldn't be that "easy" (like any of this is easy, right?). I had hoped something would come back, because then there'd be something to treat. I've never wished to have a mutation or antibodies so hard in all my life. So, it's looking like I might just be one of those women who had nothing at all wrong with her, but never could have children. Clearly it's a punishment of some sorts.......I did something really wrong in a past life or something, paying for it in this one.

    Every time I think I'm as broke as I'm going to get, something else kicks me and another piece chips off......eventually there won't be anything left of me at all.

    Ok, ok, hope everyone else is making some headway, because I'm sure not. Xx

  12. #327
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    @tigerlilly9772 couldn't read and run so my reply is only short, yes you can have high nk cells in the uterus and not in the blood as I have this. No other tests show any abnormality like you except I do have a positive ana. Other than that nothing else is really wrong a little endometriosis that's minimal and mild PCO. Hope they can pin point the issue and I'm sure dr m can help. There are many things they cannot test for yet as science has only come so far, I do believe steroids are miracle workers and fix all sorts of things so perhaps that's all you need, wishing u the best of luck

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    tigerlilly9772  (24-09-2015)

  14. #328
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    I haven't followed the thread. But just read your last post quickly. It is POSSIBLE that there isn't anything wrong with you but the NK cell in the uterus. I have known a lady like that. You didn't have the NK cell blood done so can't comment on that. HLA match is pointless because you are using donor eggs. Have you been using the same donor? To avoid HLA match, DrM might suggest to just switch donor.

    Dr M's treatment (or any immune treatment) is also trial and error so be mindful that you might have to give it a few go to get it right. You can just get the kitchen sink approach if you want to give it a go regardless of you having any immune problem or not. All the best.

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  16. #329
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    Hi miissilina,

    ok, ok, well that is somewhat reassuring. I have PCOS (moderate), insulin resistance (use metformin and diet to control it). I'm discouraged but if it's possible to have NK cells in the uterus but nowhere else, then I'll hold off my crying fit until I get those results back. Really hoping Dr M can do something.

    Hi bbhope,

    I have read that that it can take a few rounds before they "get it eight". I'd like to say I'm prepared for that but I'm not. I've been trying for so long, 12 years. But I can't change the outcome, will just have to wait and see.

    Now, ow, I didn't realise he didn't send me for blood NK cells testing. I wasn't sure what was what.....I thought that's what ANA was.....NKCs. Agh. SEE? That's what I mean about him not being very aggressive!!! Damnit, I want testing on EVERYTHING. I'M paying for it, I'M the patient going through so much heartbreak.......I swear.......if I didn't possibly need him for possible treatment administration (like helping me organise intralipids if it came down to it) I'd fire his slack a***. Good thing I went ahead and hooked with Dr M when I did. Maybe I'm mistaking a great bedside manner for something else......

    ok, well......at least I know it's a POSSIBILITY I can be normal everywhere but the uterus. That's something to hang on to until 15/16 Oct. I can't wait to talk to Dr M......I hope he send me in for a whole battery of extra tests.....and I actually can't wait to have this biopsy so I can find out more about that. Then I just hope there is SOMETHING......something that can be treated. If not? I don't know what I'll do.

    Thanks girls, really appreciate the boosts! Xx

  17. #330
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    Tigerlily,
    Of all those tests you mentioned, mine all came back clear too (and a slew of different doctors kept ordering them so I had them repeatedly). It wasn't until I had the biopsy and some of dr m's extra tests that my issues were picked up.
    I hope they find something "wrong" with you (you know what I mean) - some answers would be nice!

  18. The Following User Says Thank You to BB77 For This Useful Post:

    tigerlilly9772  (24-09-2015)


 

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