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.
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
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
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..
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.