Update as promised

Hi everyone. Hope all is well with you all. I recently posted, received a number of supportive and helpful replies and promised I would update you after Die been to the doctors about my low platelets. Went to doctors and discussed my dropping platelets and now have a diagnosis of Thrombocytopenia. The treatment he wants to give me is weekly self injections until reading goes up to normal range, but before he proceeds he has written to my hepatologist for his approval. I asked for a referral to a neurologist for the issue of bells palsy and left side weakness.

Can I ask you to wish me luck for Thursday for endoscopy and possible banding as I hate it

Love to you all

Julie xx

31 Replies

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  • hi julie ,,its good to hear from you again and it looks like your ontop of things ,,great ,,,,the bells is still with you ,im sorry to hear that it does take time to sort itself and i hope your Neurologist can help,,,Endoscopy ive had before the once ,,dont remember much about it now ,,be brave with yours ,,,,and im hoping no banding has to occur,,,,,been thinkin of you this week ,,regs your health and you giving me the meds i need to try for my neuropathology ,,tuesday cant come any sooner for the doc as its driving me nuts lol,,,, ive decided ill take anything as long as it eases the symptoms,,,have a good wknd Matt

  • Hi Matt, thanks for that x are you going to ask for pregablin? The other name for it is Lyrica tablets. Had 6 varicies banded last year, 4 then 2. Different hospital this time that works under Cardiff so long journey. Going on my own with patient transport. I'll be chatty all the way there and silent, clutching my stomach all the way home. Hope you get sorted on Tuesday.I tried morphine for the neuropathy pain and even that didn't work yet the tablet I'm on now kills the pain in 10 to 15 minutes. Let me know how you get on

    Julie xx

  • Hi Julie, yes of course, good luck with the endoscopy, and totally agree they are not nice at all. Will they let you have some sedation to make it a bit easier? I know it is not always possible but I found it a massive help on the occasions I had it done.

    All the best, Chris.

  • Thanks Chris, have alternated between sedation and throat spray and its going to be sedation this time. Have arranged for someone to stay here the night like the hospital tell you to as I live alone. Hope no banding but they always find some!

    Hope your ok and thanks again

    Julie x

  • Hi Julie how low was your platelet count...in the last year my count has gone up from under 50 to the most recent of 106 without any medication..no-one seems to be doing anything other than my acohol free regime...good luck on Thurs..hope all goes well for you...best wishes Rob xx

  • Hi, mine has been dropping on each test. It was 60 4 weeks ago and 50 4 weeks later. It started going down 2 years ago approx, but I have the classic symptoms of Thrombocytopenia which are low platelets, bone probs, blood pin pricks on legs, my hepatologist is doing my endoscopy but because it's not a discussion appointment I can't ask him anything which is frustrating until my next out patient appt although my gp has written to him.

    Take care

    Julie x

  • Spelling bad, tablet turned ide into die. Predictive text!,

  • Best of luck. I hope this time it goes so smoothly you are all smiles afterwards. I had that happen once. Sending love.

  • Hi, thanks for your supportive message, Very much appreciated.

    Take care

    Julie x

  • Hi jules just wanted to wish you all the best with the endoscopy .

    Regards Jane xx

  • Thankyou xx

  • Good luck !!!!

  • Good luck~~~~~

  • Thankyou xx

  • Hi Julie. Sending you lots of love and luck for Thursday ❤️🍀❤️🍀❤️🍀

  • Uurgh, the thought of it makes me queasy. Thanks for your kind words xx

  • Hi Julie I hope all goes well for you and I wish you good luck and love and peace today and everyday. Xx

  • Lovely message, thank you so much. May I wish the same to you xx

  • I wish you luck with endoscopy, not my favourite intervention either, better once its over! keep strong. Charlie.

  • Hi Charlie, thank you. Why does a 10 minute endoscopy feel like an hour?Love julie xxi

  • if you get enough sedative, it feels like 5 mins! that is key!

  • Ha ha, I will ask! Xx

  • The right amount of sedation - feels like it never happened !

  • The very best of luck to you - I'm sure you'll be OK.xx

  • Hi, like Charlie said, I'll have sedation. Thanks for your support xx

  • Good luck, endoscopies are yuk yuk yuk but over quickly thankfully, all our good wishes will carry you through! Sedation all the way and go to another place in your head. 😑 Hugs x

  • Hiya, thanks for that. It doesn't matter how many times you have it done, you never get used to it. I will go for max sedation I've decided. Best wishes.

    Julie xx

  • Lovely name for an upcoming lecture at the Royal Free by a professor Epstein, gastroenterologist. He is pioneering patient friendly endoscopies. The title of the lecture ?

    The tunnel at the end of the light !

    Jim

  • How interesting and a great title, ha ha.

    Hope he hurriesup with his project in time for my next one

    Julie xx

  • Best wishes for your endoscopy Julie - a wee hint from hubby who you'll no doubt remember has rather been through the mill with endoscopy and 42 bands - hold your breath whilst the throat spray gets skooshed and in that way it won't trigger your gag reflex & definitely take the sedation - you shouldn't be very aware at all of the procedure.

    Hubby never realises how short a time he is away and doens't remember anything afterwards - yep he still dreads it when he knows an endoscopy is coming up but he now tolerates them far better & hasn't had a failed one for over 2 years.

    Rooting for you.

    Katie x

  • Hi Katie, yes, your husband's 42 bands was in my mind recently. He certainly has great experience of this dreadful procedure. Ì am grateful foŕ your advice. You are very generous with helping others with various problems as well as dealing with your own. How are things with your husband? I'm quite shocked that my hepaþologist is doing it and not a gastro I've never met as before.

    Thanks Katie

    Love julie xx

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