Hello all , it's my first time posting..
I have been having investigations for ANCA Vasculitis for the past 7 months, but been having ongoing health problems for the past 10 + years. (Untreated)
I was referred by my GP to a Vasculitis Specialist in Birmingham Queen Elizabeth hospital but yesterday's diagnosis of SLE was quite a shock.
My symptom list is exhaustive, & most of it tied in with Vasculitis, but what confuses me the most is I was tested for lupus to begin with. & all of my results were overlooked.
I paid for my extensive blood tests privately as my GP was neglectful, I was denied the lupus screening tests & decided to go ahead by myself. As I was sick & tired of feeling so poorly
I've had a positive ANA for 10 years & my doctor said it was nothing to worry about. My WBC has always been extremely low
Recent bloods from Feb 2017 were ANA Positive with speckled pattern titre 1.80
Positive Anti Ds DNA
I will share my first post that I put on on Vasculitis UK as I think some of you will understand my results more than I do.
So now I have SLE I'm due to see my GP on Monday the 5th August.
the Vasculitis specialist yesterday suggested that I should start treatment of Hydroxychloroquine.
Through out my whole ordeal with procedures & tests I've had no treatment. Just got by with paracetamol & GORD PPI's.
it's been an exhausting journey but I feel lucky to have a diagnosis its been a very long journey for me.. despite the 10 years of constant battles with my GP demanding for blood tests, being ignored & screaming to be heard, being denied of any help what so ever I spent the best years of my life suffering. No medication, no referrals to a rheumatologist, no scans, x rays. Just antibiotics.. that had no effect apart from hurting my tummy more
I had a gastroscopy on the 2nd August for GORD & excessive Gastric reflux, Stomach & intestinal issues also issues with my large bowel & unable to eat solid food without vomiting. Even drinking water hurt, So I am on a liquid diet as I am struggling with eating. I became full after a few bites & couldn't stomach anymore, I have lost so much weight & in a lot of pain when it comes to eating. It radiates from under my left rib cage and around to my back & had a dull ache in my left shoulder, I also get spasms in my stomach, really loud gurgling sounds & my stools have been different, orange with stringy mucus.
(Sorry it's disgusting)
I'm waking up at night chocking & unable to swallow, I've had GORD for 14 years was left untreated for many years & for the last 2 years I've been taking lansoprazol 30mg. Now 60mg due to the amount of acid. Feels like I have a lump in my throat, it's very distressing & painful I've had Dental issues with entire tooth erosion, restoration work to build up my teeth, TMD, multiple tooth abscesses. Erupted Wisdom teeth, throat lesions & now recently I have a large brown pigmentation patch on the surface of my mouth just where the main vein is under my tongue.
I'm waiting to hear from the oral facial surgeon for skin Biopsy.
I couldn't go through with the gastroscopy in the end, I had a terrible panic attack I was standardly sedated & had throat spray but I didn't react well & I just kept gagging, I was held down but I kept pulling the tube out, it took 6 goes before the endoscopist abandoned the procedure due to the safety of myself & the staff.. it was a terrible experience.
I was due to have Biopsies taken, but now my GP has to book it in at my hospital in Cheltenham & I need to be put under General anaesthetic as it will not go ahead again with just sedation & throat spray.
Skin rashes, multiple lesions on limbs
Lesion Ulceration on arms & legs
Joint AGONY knees hips shoulders & now elbows
I also have hyper-mobility in all of my joints.
Feel sick all the time
Tiny Multiple lung granulomas
Protein in urine
Night sweats very bad
Swollen legs & pain when walking eases with rest
DVT Doppler test result 860! Couldn't find the clot, but ended up having a suspected TIA.
Cardiac first degree heart block, episodes of AF resting heart rate is always above 120.. rapid heart palpations
Numbness in hands & feet big toe completely numb now
hair Loss & thinning doesn't grow
Metallic taste in my mouth like I've been sucking on a 2pence piece.
Weak tired & just not feeling human anymore.
Reoccurring infections in my left kidney bronchitis & respiratory breathing problems
High blood pressure but always used to be low
The list in endless guys, but I hope when I start my treatment I can have a better quality of life.. because I've just been existing,
& hopefully I can have a better understanding now I know the name of my disease & I can educate myself & adapt to living with it.
Thank you for taking the time to read my post. Im sorry if I've rambled on to much, but it would be amazing to hear back from some of you who can relate to what I'm going through, it's a very scary place to be.. I'm in the unknown.. eeek ☹️❤️