Hello everyone
I too want to give you all a group hug for all your support. I've had really good news this week, wound been signed off as healed after four months and arteries given clean bill of health from vascular medicine!. Huge relief and I thought it's nice to share good news for a change!.
Hope your all as well as possible and liking our spring weather.
Thanks again for your help, much appreciated. MistyX
Wonderful news Misty re vascular medicine and also your shin wound healing at last.
I think all those daffodils Coco has been sending us all are bringing lots of luck too! xx
Great news Misty14 xx
Thank you hollydebs. How are you getting on?. X
Getting there. Still on Hydroxy as Aziathroprine badly affected, side effect wise so hospital are now 3 monthly monitoring to keep an eye. Not confident re trying something else in case same reaction.
Memory getting really bad & am finding I'm getting clumsy, keep knocking into things & losing balance. Do you ever get that?
Hi hollydebs
Glad hospital is monitoring Aza closely because of side effects, sorry it's needed. Don't be put off trying other drugs because Aza is well known to be difficult with blood counts. It was the reason I had to stop it twice!. I do lose balance because of neuropathy. Have you talked to your Rheumy about those symptoms?. You might need to see a neurologist and have nerve conduction studies. Do hope you improve, not nice coping with these extras. X
That's excellent, misty, and well deserved . Onwards and upwards! x
That's wonderful Helen, it's really great to hear good news. I'm so pleased for you, you must feel much relieved now😀
Big hugs
Diane🌺xx
Hi Diane
I certainly do, been a long stressful haul. Would you believe today my GP admitted that they had a machine that the hospital used on Tuesday to test my pulses but it had broken and they hadn't replaced it!. He said good idea if they do as could have saved me going to hospital!. Shocking waste of resources really!. How are you?. Are you seeing a Gastro soon?. Good luck if you are and have a good weekend. X💐
Great news 🌻
Oh dear honestly well perhaps they'll replace it now, might have saved you a lot of angst and worry 😫!
I'm just plodding along thanks Helen, had a neuro appt on Tuesday and saw gastro yesterday so now waiting for a date to have a gastroscopy and colonoscopy, he thinks it could be IBD or diverticulitis, maybe Lupus related, although it's a lot better than it was, the discomfort is still there and gets worse from time to time so still on a bland diet, he said it'll be a 3 or 4 week wait and very kindly gave me the box of picolax and instructions ready, I am dreading the bowel prep more than the actual procedures😱
Ah well it has to be done, I need to know what's going on as long as I'm out of it while they do it!
You have a good weekend too 😘🌺xx
Hi Diane
Good luck for those tests, not nice to have to go thru the prep but you need answers now!. Fingers tightly crossed you don't wait too long and don't have IBD or diverticulitis!. Not easy conditions to live with!. How did your neuro appointment go?. Hope you have as good a weekend as you can. Big hugs💐😊 Helen
Hi Helen, thank you hopefully it'll be early April...watch this space!
As for Neuro I wasn't too happy with the outcome as the rheumatologist wanted a second opinion on my multiple white matter lesions in my brain and wondered if the biggest one could be causing my symptoms and if I needed stronger immunosuppressants but all he could focus on was my memory and concentration and put it all down to fatigue and now I've got to have a 3 hour cognitive test! He didn't think there was a link with SLE which I find odd because there's lots of info and research on SLE and small vessel disease in the brain and this awful sensation I have I believe is separate to fatigue so I'm going to discuss this further with my rheumatologist who I'm seeing on 21st March? I may not need stronger drugs at this point but I would've liked neuro to have acknowledged that there can be a connection instead of dismissing it! So again watch this space...my list of questions is getting longer by the day😫.
Big hugs 😘🌺
Hi Diane Consultants can be a law onto themselves sadly!. That sounds like such a worry for you that your right to take it up with Rheumy again!. He won't be pleased with neuro's attitude either!. Keep me posted and your so right to keep fighting but it's tough and wearing!. Fingers tightly crossed for you. X💐😊
Thanks Helen I hope he'll see my side of it, it'll be interesting to see what the neurologist has written in his letter back to the rheumatologist , hope he sends me a copy.
Take care and hope you're able to have a decent weekend.
Hugs 🌺🤗😘xx
Hi Diane
You can ask the neuro secretaryfor a copy of the clinic letter. At clinics you can ask to be copied in as a general rule and they put it on your notes. I've had some long overdue retail therapy today and loved it!. Hope your enjoying your weekend. X😊💐
Good idea I'll call the secretary if I don't receive one, thanks Helen👍🏼
That sounds lovely, I'm so pleased you have enjoyed some retail therapy, I do most of mine online these days but every now and again I get into town....it's good for the soul 😀
Enjoy the rest of your weekend, take care.
X💐Xxx🌺
Yippee! Positive news! It is really important to share our highs and our lows. It all helps us, shares our knowledge and experience, gives us hope. Brilliant Misty14. So pleased for you. Have a lovely weekend.
Thank you for your lovely reply Wendy I so agree and it was Barnclown's post that inspired me!. It's also important I feel to thank forum for support as they helped me thru!. Fingers tightly crossed you get your good result and you'll be spreading positivity too very soon. Good luck and have a good weekend too. X
🌟🌟🌟🌟👏👏👏👏 🎉🎊🎈🎼🥂
YAYAYAYAYAY MISTY!!!!!!! 💃💃💃💃
Enjoy the weekend, Well Done You 😆
🍀😘🍀😘🍀😘
Thank you Barnclown, it was your lovely post that inspired me to do group hug too!. Forum had helped me so much and it's nice to say thank you. Also feels good to have warmer Spring like weather doesn't it?. Your daffodils are beautiful.
Good luck with your last minute prep for Monday pm. Not an easy time of day to have such an important consultation but you'll be GREAT. Fingers tightly crossed you get the help you need. Look forward to your update , let's keep the positivity going!. Have a good weekend. X🌟🌟👏🏻👏🏻💐💃🏿💃🏿💚💚👌🏻👌🏻X
🤗 Yes: this spring weather is grrrrreat medicine 👍👍👍👍
I hope we'll have lots of Group Hugs ongoing here 👭👫👭👬👫
Thanks so much for EVERYTHING dear 🦉🌟misty ❤
Fantastic news Misty!
Soooo pleased for you. 😊
It's really great to hear some positive news. I'm really pleased for you.
That is fab news! So nice to hear positive news, gives us all hope.
💕🤗💫🌈
Was delighted by this news as you know! 💃🏻💃🏻💃🏻👌🏾X
That's FAB news Misty!!!
SO pleased for you. Thanks for sharing your positive news.
Big hugs.
Joy x
Hi Joy
Thanks for your lovely reply. I thought we could all do with some good news for a nice change!. Hope your coping with your steroid taper.x
More good news
Finally good news and sending all good vibes!
Good news about DLA !
Good News ? Bad News ?
