Dermatology Update

[misty14]

Hello everyone

Just thought I would give an update on my leg lesion removal because I have had the best news. It is a benign one so no further treatment required. Feel so relieved, just need it to heal well as I'm going to the nurse twice a week for dressing change. It's making good progress but needs time as awkward spot shins for healing, never mind the steroids!.

Do also want to mention that the doctor who removed it knew what UCTD was and understood it as a proper diagnosis which pleased me greatly !. Gives us all heart when we come across good practice!.

Thank you for all your support , did appreciate it. Hope your all as well as possible.

Love MistyX

[Fennella02]

Hi Misty. I'm delighted to hear that you have been given the all-clear about your skin lesion, I can well imagine how relieved you must feel.

So many people view UCTD as a non-diagnosis or a 'holding' diagnosis but hopefully time and awareness will alter this ignorant attitude. Those that experience UCTD will all agree that there is nothing transient or mild about its manifestations. UCTD seems to command the right to do exactly what it wants, whenever it wants.

Enjoy the rest of your weekend - what an epic storm we experienced last night. The lightning was phenomenal xxxx

[misty14 in reply to Fennella02]

Hi Clareb, thank you for your lovely reply. Yes, I do feel very relieved, didn't want anything else to cope with!. You are so right about UCTD but it is more of a proper diagnosis having read about it recently. For years doctors led me to believe it wasn't anything much and it's thanks to this forum that I know differently now and it's given me much better self esteem!. How has it been for you?. I thought of you last night as suddenly I ached more, went hot, headachey and thought not over flu jab yet!. Feel lousy but didn't realise storm was so bad last night!. How are you feeling?. X

[whisperit]

Great, Misty,

Even a wet and windy day in late November feels bright when a weight like that has been lifted. Onward!

Mx

[misty14 in reply to whisperit]

Hi whisper it

Thanks for your lovely reply. That's why I posted, we can all do with good news from time to time!. Any news on your referral?. Hope you are coping. X

[whisperit in reply to misty14]

Hi misty, Good of you to ask, but no nothing yet. Funny enough, I've just had a really unpleasant episode of palpitations. Any more of that nonsense and I will be calling the out of hours doctor; otherwise, it's just the usual chase-up calls in the morning!

Mx

[misty14 in reply to whisperit]

Hi whisper it

How were you overnight?. Palpitations are horrible and worrying. Good luck with those calls. Isn't it wearing how we have to chase up so much. Bad enough being ill!. X

[whisperit in reply to misty14]

Absolutely! I had a rubbish night and was on the phone by 7.45 this morning! I saw my GP first thing; he'd had a note from the cardiologist, who said he thought it wasn't likely to be POTS (no idea why). However, neither did he want to see me about the echo. Result - he will refer me for tilt table tests elsewhere and see me after that. Since that means months of waiting, my GP was easily persuaded to start me on B blockers.

Its funny to think that a year ago, when I was just starting this journey, the prospect of ANY medication was really scary. This morning, I was virtually pleading for more!

Thanks for your thoughtfulness, misty. It really does make a difference to know that someone else has me in mind.

Have a good day!

x

[misty14 in reply to whisperit]

Hi whisper it

Cardiologists are tough and it's interesting that the guy still referred you for the tilt tests despite not thinking its Pots!. Your echo must have also been fine so ruled out the worrying things. I've had years of chest symptoms like you, pain and palpitations, loads of echos all clear, and other tests, now it's been diagnosed as serositis or inflammation of lining of heart and it responds to Colchicine an anti inflammatory given for gout!. I know from a fellow forum member how similar POTS sounded to Lupus so they're right to investigate. I have taken a beta blocker years ago that did help my symptoms so I hope it works for you. Sorry to go on but it helps to know we're not alone struggling with these illnesses doesn't it?. That what makes the forum so FAB!. Glad I've helped and keep us posted. X

[EOLHPC]

YAY 🌟🌟🌟🌟👍👍👍👍👏👏👏👏 you've made my day! Am so relieved & happy...thanks vvvvv much for letting us know 😆😆😆😆. And that's GRRRREAT your dermy acknowledges & respects the UCTD diagnosis 💪💪💪💪.

Hope the wound's healing process is complete before long...please let us know how this goes: YES, leg wounds, especially of the shin, can be extra tricky, and even more so for us with our connective tissue & immune dysfunction issues + on our meds. How are these nurse appts handled: do they seem to appreciate the complexities of your case? How are you coping at home, eg bathing? Are you advised to avoid anything, eg limit weight bearing?

🍀😘🍀😘 coco

[misty14 in reply to EOLHPC]

Hi Barnclown

Thank you for your lovely reply. It's lovely to be able to share good news. The nurse appointments are five minutes to change the dressing and put special cream I've got to aid healing. I can give you it's name if you would like?. They write up after each appt what they've done and how it is I guess on the computer and they know my medical history and what dose steroids I'm on!. The nurse on Friday said it can take weeks . It's so good that if there's a sudden change they will pick it up quickly!. So far all is going to plan. I was told to put leg up when sitting to aid healing and I still do and showering takes longer as I must keep it dry so I put a bin liner round my leg first and then use a special shower sleeve you can buy in Boots for £4. It's plastic with ties each end to put over legs, arms to keep wounds dry !. It really does work. I am finding these extras tiring but grateful for the care. I think you will understand!. Good luck tomorrow for your eye appointment. Let us know how you get on. Hope your not being bashed by stormy weather too much. We'll lose the lovely leaves!. X

[Hidden in reply to misty14]

So delighted for you Misty. I don't have lesions these days but know what a relief it is to find out that something possibly scary, is actually benign. It still sounds horrid for you though so rest up and fingers crossed it heals very well now.

I've got to thank you, Clare67 and others here for making me aware of UCTD as a fully fledged disease in itself. And I now know that, similarly to Sjogrens and MCTD, it's not just a Jack of all Trades as some assume about Sjogrens too. I'm able to relate to many of your symptoms myself as welI. I recall my friend telling me she has UCTD, and describing how was always being made to feel it was nothing much, where she's had periods of being wheelchair bound and heavy duty spinal surgery where her discs have fused. Now I'm able to reassure her that she's right to push for more rheumatology input and to get it taken seriously.

X

[misty14 in reply to Hidden]

Hi twitchy

Thank you for your lovely reply. I have been very worried and now so relieved I also don't have anything else to cope with!. We collect enough!. Will be glad when my leg has healed as it can be painful but not all the time!.

So pleased I've helped you and your friend realise UCTD is a proper disease in itself. It's thanks to this forum , Ann from New York posted a link to a good explanation that I learnt it was a better diagnosis than the doctors had led me believe! Boosted my confidence no end!. It's great that your urging your friend to seek specialist Rheumy help. Hope she gets what she needs, sounds like she's been through it!. Talking of specialists, I think we're both seeing our Rheumy's on the same day or certainly same week so I hope we bring each other luck. Mine is the 29 th Nov. I do hope you get the diagnosis and treatment you desperately need. Vindication for all your struggles!. Fingers tightly crossed for you. Good luck. X

[EOLHPC in reply to misty14]

Many thanks for all these details! Vvvv helpful & interesting...good to know the NHS is giving you this standard of care & attention.

Yes, I'd be v grateful for the name of the wound cream: do tell 🤗

The shower sleeve sounds grrrrreat!

Storm not too bad here...last thing I want is my eye clinic appt messed up by the weather 😏...

😘🍀😘🍀

[misty14 in reply to EOLHPC]

Hello Barnclown

Glad you found my answers helpful. The cream seems to be quite specialised as it doesn't really have a name!. It says on the tube, 15g of fluid donating hydrogel. Brand name mentioned is activheal. Hope this info might be helpful. I am very grateful for the care I'm getting, NHS at its best!.

There are so many helpful products on the market that help us cope with illness or disability, easing our day to day lives.

Best of luck today for eye clinic. Hope you can go. Devon has an amber weather warning out!. Fingers tightly crossed. X👌🏻👌🏻😊😊

[EOLHPC in reply to misty14]

🍀😘🍀😘👍👍👍👍

[Wendy39]

Misty, I'm so pleased to read your post today! Fantastic news and a huge relief for you. Thank you for sharing and making us all smile. X

[misty14 in reply to Wendy39]

Hi Wendy

Thank you for your lovely reply. That's why I did it, and have thought of you as you've had best care and knowledge from Dermatology rather than Rheumatology!. How did your appointment on Friday go?. Hope better than you thought. X