LUPUS UK
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Peutz–Jeghers syndrome

Hello guys & girls.

I’ve attempted to update you all a few times last week. But so much has happened & I thought I would wait for a quite moment to message without any disturbances.

So.. 28th Appointment With Gastroenterologist was a complete flop.

I didn’t see Dr shaw, I saw professor ***** who was one nasty piece of work. I won’t go into too much detail

I’m used to be treated like a joke but it’s the first time that I’ve walked into a doctors office and I was introduced by ***** saying “well from what I’ve read here... your the silly girl who couldn’t withstand a simple Gastroscopy under sedation, you had to be the 1 in a 999,999 who needed a GA, stupid !!” I said a hello would of been just fine ?!

he had no knowledge as to why I was there or who had sent me. I was laughed at & mocked, & felt like a clown. I mentioned Dr Shaw- Private - Winfield Hospital.. he didn’t believe me until I showed him my report letter.

He couldn’t access my recent results & just made assumptions that my CT appeared normal, my bloods appeared normal. Explained that I’ve had far to many CT scans in my lifetime & (most) of them have been clear.

As he continued to laugh at me, i asked the nurse in the room how I go about making a formal complaint. I walked out & she handed me a tissue. & said she’s never seen anything like that before & felt very upset for me.

Anyway..

29th November my Gp called to say that my Serum Folate was 2.1 & B12 borderline I have anaemia. (Pernicious).

Put on folic acid & will be having injections next week for a stronger amount. My CRP levels are High not sure what the levels were

ESR elevated.

I’m still waiting for more blood results.

Dentist appointment 30th November.

My dentist is one of the most Loveliest lady you could ever wish to meet.

She’s been so supportive over the last year & half & is supporting me still.

Due to a soft tissue test I now have abnormal discoloration of oral mucous membrane: lips, floor of the mouth, under my tongue.

She mentioned the rare disease called

Peutz–Jeghers syndrome.

She’s referred me to a different Oral and Maxillofacial Surgeon.

Who will be investigating these findings. My dentist said it’s very rare & she noticed the abnormal discolouration 4 months ago & contacted them & they’re opinions & concerns were to investigate my case ASAP. So I have an appointment on the 12/12/17. Its now spread on to the inside of my lips, I also have more growths on my hard pallet. Plus after researching the disease online it fits with all my problems. Pancreas colon bowel etc..

it’s uncanny.

5/12/17 tomorrow, I have an appointment for my agonising Theoretic Back pain. I’m having a X-ray. It’s been identified that it’s my T7 Vertebrae. No injury.

I’ve had some episodes of numbness, on my sternum, belly button & private area. Continuous itching & deep bone pain in the middle of my back.

Also Pins & needles & erratic spasms in my groin & top of my thigh. You can see it pulsing through the skin.

I’m due to see mr shaw 2/2/18 trying to get a private appointment so I can be seen quicker. Colonoscopy to be arranged.

Eating is still a bitch & anything solid is a nightmare, I enjoyed a tiny bowl of stew at the weekend I struggled, So I removed all veg & just had the gravy stock. Was yummy. Nice change to shakes. & bland build up soups..

Slowly but surely my taste buds are coming back. I still have no appetite & declining daily. But thanks to my dentist she’s put the spark of hope back in my bones!

My son has been in bed all week with the flu & I think it’s hit me.. so I’m off to bed. Sharing is caring..

I’m glad that my dentist has been thorough, & getting me in to see a specialist for this rare disease investigation. Although every person is different & has different symptoms mine is very similar. I have no pigmentation on the outside of my mouth, it’s only on the inside. But I feel like I’m on a new path..

Hopefully my Christmas wish will come true.

Goodnight xx

12 Replies
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What an awful journey you’re on to get answers LauraMK. I really hope you do complain about the obnoxious idiot gastro you saw! I’m to see s gastro at the end of this month for much less severe problems than yours. I do hope they (it’s a she) are a hell of a lot more professional. And if you do have Peutz–Jeghers syndrome.then this makes the gastro’s treatment of you doubly shocking doesn’t it??! I mean this is or should be every clinicians dread - that they fail to identify anything rare but potentially serious.

So please make that letter absolutely as ruthless and as withering as you can to give the man a taste of his own medicine!! And copy in PALS to.

Xx

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I can't believe the rude arrogance of that consultant. How dare he talk to you like that Laura. Definitely make a complaint and ask for an apology at the very least. I would like to give him a gastroscopy! I doubt very much what it's like to have one.

Thank goodness for your dentist. I really hope this leads somewhere. As much as you don't want PJ it's important to have a diagnosis and a relief to know what's been going on. So I wish you luck with that.

Hoping the news has put a sparkle back into your life.

Merry Christmas - hope you manage to eat some of your Christmas dinner.

Look forward to hearing an update.

Best wishes, Ludo x

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Hey Ludo,

It was one of the worst experiences. I made a formal complaint & I was besides myself. My dad & I assumed it was my NHS appointment with Doctor Shaw, but turned out to be a complete mistake. My GP didn’t refer me either so it’s a mystery. Someone got there wires crossed, but I took the brunt. that’s the last time I will let anyone speak to me like that.

Everyone is different, each have there own strengths & weaknesses, I struggle greatly with anything in my mouth, that’s why I attend a phobic patient Dental clinic.

I’m very grateful that I was put under general Anaesthetic. Safer for me & for them 🧐🤮

it’s about the comfort of the patient. It’s better to be relaxed than anxious & scared helps to get the job done.

Anyway yes, my dentist Shona is someone I trust. & after the countless poison apples (consultants/doctors) that I’ve seen she is by far the only one who cares. As much as I don’t want PJS, I know I’m in good hands. I have many tests ahead, it’s gunna be a little bit scary but I’m ready for it.. im gunna be ok in the end.

Merry Christmas to you too Ludo, I hope you & your family have a wonderful one.

We’ve booked in for a meal this year, & it’s a 4 Course dinner!!

I can always mash it 🤗.

Much love & hugs

X

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What a moron! You absolutely MUST complain. And while not wishing this PJS on you, one can't but think that if you WERE to be found to have it, that he really would have egg on his face wouldn't he?! 🤔😊

I would demand a formal apology from him.

I hope you find answers soon, let us know how the appointment goes, and how the complaint ends up. Xx

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Absolutely disgraceful handling by the gastroenterologist. Please do make a formal complaint. If you can find the name of the nurse she may be willing to witness, but that may well come up when you give the time and date of your appointment and the complaint is investigated.

I hope all goes well on your future journey x

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Thanks Lupiknits,

The Nurse was present when I made the complaint.

It was her first week in his gastro clinic & she said “ supporting my complaint was worth loosing her job over”

I was very humbled.

I wonder to myself sometimes that some doctors should remind themselves the reason why they decided to become a doctor/specialist. & if there love for helping people has declined they should consider choosing another field.

If I was a doctor no matter the pressure I would always remind myself the reason I chose to be a doctor id show empathy & care to a stranger, whether they deserved it or not, a patient is a person with a beating heart & we all deserve to be treated with grace. I’m vulnerable & weary & I looked to him for help, & the least he could of done was apologise for his actions but instead he chose to click his pen & laugh, tap away at the computer & play with my life.

& the worst thing about it was, when I got up to leave he said “Laura I could do a colonoscopy but don’t think for a second that you will be eligible for a GA as it will be denied” & giggles

I just left. There is no way in hell I would let that horror of human being perform a Colonoscopy on me.

I’d rather suffer.

Thank you for your reply it means a lot x

I hope you have a lovely Christmas x

1 like
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Good work by that dentist! So great when you feel like someone is looking out for you. Onwards and upwards! X

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She’s a rare gem ! Yes the only way is up :)

Thanks 🙏🏼 x

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She’s a rare gem ! Yes the only way is up :)

Thanks 🙏🏼 x

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Please file a complaint via PALS and take it all the way you can - that is utterly unacceptable and must not be left. Totally non-professional. If you don't then he will continue to do it to other people who don't have the back-up you obviously now have.

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Good heavens what an absolute terrible excuse for a human being. How dare he!! He should be struck off. Please please do complain. If you start with pals they will send your complaint to the relevant people and start the ball rolling. Apart from making sure he doesn't do this again it'll also make you feel a whole lot better knowing he hasn't got away with it. All the very best of luck and please do keep us posted.

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Hi Laura. Such a shocking way to be treated that I agree with the others that he should be struck off for his attitude!.

I've learnt the hard way with nasty consultants ( not as bad as that) to stick to nice ones like glue. Even to point of ringing their secretary first to make sure I was going to see the one I wanted in clinic that day!. I t looks like you need to do the same to ensure you see Dr Shaw. Hope you see him soon.

Hurrah for your dentist being so supportive and clever picking up this rare illness!. Amazing that it includes bowel problems. It does offer you that ray of hope which is so important to keep you going!. Keep us posted how it all goes and know that we're with you 100% in your complaint !. No- one should be treated as you were by a medic!.

Hope you haven't got flu and you feel better soon. Go Laura go!. X

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