It's a bit of a long one so I do apologise in advance x
Yesterday I had a combined Appointment with the E.N.T doctor & my specialist prof Lorraine Harper.
I had a nasal endoscopy which showed my right nasal passage was very narrow
but my CT scan results of my sinus revealed no infection, which was expected as I didn't have an infection at the time- so I received the all clear. Which is good but still doesn't explain my symptoms.
I wanted to mentioned quickly that I've had many reoccurring sinus infections, foul smells up inside my nose, nose bleeds, crusting, & constant dripping when I bent forward, and Also dripping that went down my throat. I was given so many different antibiotics to cure the relentless infections over the last 5 years+
I mentioned to the ENT doctor I had a stubborn dental abscess throughout 2016. A whole year I spent struggling with pain, swelling added on to that i still had the same horrific sinus pressure headache constant pain but multiplied by an abscess. Which was the icing on the cake!
I endured Multiple drains on the same tooth for an entire year, each month I would continue the root canal treatment have a period of 3 week rest to help the healing process & then continue again until it was complete
I had a few x rays which showed that the abscess began pushing on my sinus nerve & the bone on the tip of the canal had begun to slowly disintegrate & it was possible the poison had leaked out that's why I could smell something rancid. Underneath my right eye it would swell & look like id been punched but take the abscess out of it years of sinusitis is terrible but add the Abscess on top & it's unreal !
My dentist wrote to my doctor insisting I saw someone about my sinusitis, she was disgusted with how I just kept being given antibiotics that were not working, & just making me sicker, she has known me for a long time & even said to a oral facial surgeon that I have been suffering terribly with sinusitis for years & this one abscess has caused more problems for me, I had to cancel a few appointments with her due to sinus problems I couldn't sit through my treatment with terrible headaches, After many root canals deep restoration work the abscess cleared. Finally !!
I felt like I needed to explain myself that I was & am actually suffering with sinusitis.. but
She insisted I was in the all clear. & nothing was or has been wrong with my sinuses.
I will honestly admit I didn't feel like either of them were very responsive, I felt like I was being rushed through the appointment. I was in & out within 10 mins... which was quite shocking
My lesion Biopsy revealed inflammation but nothing else was said.
Prof Lorraine Harper said my bloods came back normal.
So she's convinced I don't have Vasculitis & there is no need for me to see her anymore.
I did ask why I hadn't had the other tests like kidney Biopsies & lung tests due to my asthma & Multiple lung granulomas. And I was promised more cardiac investigations too.. I also wanted to know my blood results but she said she would send a copy to me with all my results & one to my GP.
She did mention due to some of the blood results positive ANA positive ANTI DsDNA & Anticardiolipin positive it indicates that I have SLE - Lupus.
Lorraine said I can start treatment as soon as my GP sees me. Which is
& my doctor can arrange a gastroscopy under general anaesthetic.
I don't feel as if I've had all the invasive tests that everyone else has had for there diagnosis but I guess it is what it is. & due to not being ANCA positive anymore & my blood levels have become normal I don't fit the criteria for Vasculitis.
Of course It's not a bad thing it's a good thing but when you've been told you have one disease your guided through the process & expect the same treatment as everyone else who is being investigated for it & then somewhere down the line my bloods changed & my specialists attitude went with it., and now I don't have Vasculitis I'm palmed off without much of an explanation, I'm confused as I don't know all the details. I wasn't informed of my previous blood tests & all the other tests were denied...
What if: they did a biopsy on either my lung or kidney.,
Why: was I once ANCA positive & now I'm negative
Isn't ANCA a antibody that shouldn't be in your bloodstream? So why was it there ? Will it come back ? What if it returns ? Which diseases apart from ANCA Vasculitis does ANCA positive fit with?
I received a bill of Silence....
Anyway guys & girls
I just want to say a HUGE thank you, to all of you that have taken the time to message me, all of your advice love & support have been heaven sent, you've all been so wonderful & I appreciate every one of you. You've kept me strong & kept me smiling, & most of all your beautiful words of encouragement & sincere care towards my health is something I will never forget. You guys have been there for me more than the people that are close to me. Your all angels & I feel blessed to have connected with you all. As I don't have Vasculitis I guess have to say goodbye but I hope life goes gentle on all of you & I'll be thinking of you always.
Please feel free to message me I would love to stay in touch, & please keep me posted on your progress. As I care very much. 😰😊 again thank you for everything I couldn't of got to this point without V.UK what a beautiful community you are. Miss you already x