Jeez where do I start... hmm
I've never joined a group before & I am at my wits end.. I have felt so unwell & even that doesn't give justice to how I really feel. I have always suffered with different infections kidney, respiratory, chest infection bladder Inflammatory & UTI & horrendous sinusitis, 7 years to this day I was sat at home feeling worse for wear. My skin became sore & inflamed a few hours later these lesions appeared on my lower limbs & then a few days after my arms. They became gaping holes & I suffered swelling/rashes/chronic pain/ I noticed my skin prior to the outbreak & it was glistening, small round circles all over my legs & I had no idea what they were, i thought I had an allergic reaction to an insect bite but it felt more than that, it was a deep burn under my skin, was unbearable I went to my gp & they looked confused & said I'm not sure what they are but here's some antibiotics come back in a week if it's not any better, i felt extremely tired no appetite just ate soup as it was easy to consume . I lost so much weight & look pale & gawnt. My parents became concerned & went back to the gp with me, they didn't seem concerned & didn't really help to diagnose anything & I felt like they were very judgemental but I went with it as I just wanted some help. I guess I didn't have the Energy to argue.
Weeks, months went by, no referrals no blood tests for almost 4 months after, a full blood count was taken my WBC was very low but this time no infection, antibiotic resistant.. & literally lifeless.. I begged to see someone else.. someone with some sort of compassion. The lesions become ulcers & the muscles in my legs hurt so much I struggled to walk. Bathing was a nightmare, if I got them wet they would sting like hot oil, and after when I was dry the skin would stretch & become raw & reopen so I was literally in tears, no help no creams no idea of what I could do to help myself as no one seemed to want to help me, It took almost a year to get some kind of acknowledgement, id been screaming for help & I was finally heard. I was Admitted to hospital on occasions had tests of every kind, I was told by a doctor I had a connective tissue disease..also inflammation in my bladder & lungs, I also came down with flu like symptoms, with a vile cough, & night sweats. no treatment no discussions.. I was told a letter would be in the post to see a rheumatologist I received nothing, i was at a dead end & I felt like I was dying.. In the end I was given morphine & salphodol for pain, but no adequate medication.. I thought to myself it must of been a extremely bad virus or something.. a bad bout of poor health & somehow it just went away.. it took a long while to get over it, but I did it as I had no other choice, my lesions healed somewhat but have left some awful scarring. I'm really self conscious about them now.
But 7 years on and right at this very moment its raised its ugly head & I feel terrible, this time it seems different to before. I've gone downhill quickly, I've lost a stone & im only petite anyway. I'm living off soups & build up shakes to be honest I'm not hungry at all, I'm sleeping the days away & im up all night with pain in my legs, my lesions are back & worse then ever, I have many more & my skin is glistening & sore, my arms are completely covered in tiny purple dots, & my poor legs have swelled with visible veins & a bluish tinge, I visited my GP this time with my dad, he had emailed & written to them without my knowing, & had been concerned with my health of late as I had quickly detiorated this time round, my dad mentioned a auto immune disease & they blankly agreed they checked me over & I explained the heavy feeling in my leg, and pain in my calf, I had been breathless for a few days & every time I took a breath in I had extreme pain, I was sat at home with my boyfriend when I had felt a pressure feeling in my chest, it felt like I was being crushed. I couldn't take a breath in & my jaw was killing me, it lasted for 3 mins but felt like forever. I was direct & felt some sort of control as I know my own body, I know in my heart there is something wrong, I got the same attitude the same look, but my dad pushed & pushed finally they said they would do a D-DIMER blood test, she said "its very unlikely you have a blood clot if that's what your worried about" but obviously we need to check, it's probably nothing, I was given a prescription of rivaroxaban 20mg, I was told I couldn't take them until I got a call from the hospital, it was Valentine's Day 14th Feb 2017 at 8.30pm. A consultant from the out of hours called me to say I had a blood clot my levels were high & needed to make my way to the hospital ASAP. I went with my dad as he's amazing.. direct & powerful in his daily work life so his help was most appreciated at all times, I was taken to a room had bloods, ECG, x ray for a PE. X-ray was clear, but my anticardiolipin ab's lgG 15.8 moderate positive. I had a long talk with the doctors there & I have to say I felt like I was being taken seriously this time, some compassion was there & I broke down in tears because it's taken so long just to be heard. I was told to take one pill a day, & in the morning of the 15th Feb 2017 I was taken to AEC - Ambulatory Emergency Care Unit. Wow they were amazing & such beautiful people! I had a CTPA scan. Which revealed tiny multiple granulomas & a leg Doppler scan was negative for blood clot. First degree heart block, & an episode of AF, I saw a dermatologist & straight away he said my skin lesions were a form of vasculitis, I zoned out because I was just thrilled that there could be end to all this suffering! It's been years & no one not any doctor has given me an idea of what it could be.. the word eureka!! Repeated over in my head... 🙏🏼 I met a wonderful doctor called Moses. Heaven sent ! He wrote a letter to my doctor asking for a urgent referral to haematology & demanded I see a Rheumatologist at the same time. His words were, THIS 30/yo, is waiting for a O/P rheum history of multiple joint pains, increased tiredness, paid for her own extensive blood tests -WHY? POSITIVE ANCA IMMUNOFLUORESCENCE POSITIVE ANA -speckled pattern 1:80 TITRE, ANTI Ds DNA POSTIVE & ANTICARDIOLIPIN - MODERATE POSITIVE. SPHENOID SINISITUS, URINE DIP BLOOD & PROTEIN. IMFLAMMATION KIDNEY NODULES GRANULOMAS - calcified - NEGETIVE. & TINY MULTIPLE LUNG GRANULOMAS NODULES WBC 3.9 4.0 - 10.0 NEUTROPHILS - 47.2% 1.84 RESULTS INDICATE MODERATE NEUTROPENIA SERUM FOLATE 2.0 ANEMIA. Needs Urgent appointment & review.
I was asked why my GP hadn't referred me for any tests & was outraged that I paid for my own blood tests £500 , he wanted to know why nothing had been done to speed up a diagnosis. Negligence.. & so much more at the hands of my GP. I was under his care & he's put a rush on everything! How kind!
I felt a little odd at 2am 15th February 2017 I had some deep pains in my chest that woke me, my leg was very heavy & I just felt strange. The only way I could describe it as something was moving up my neck.. & then I lost my superior vision in my right eye. Felt like a shade had be pulled down over my eye I couldn't see all I had was a small faint line of washed out view. It was so scary, no pain just loss of sight. I went to see my optician who did a few tests.
His words : reading from a letter
Single episode of loss of superior vision, sudden onset, with deep chest pain, needs monitoring no episode since.
Investigations for vascultis needs urgent attention
Benign hypermobility syndrome possible Vascular EDS??
Hx of Migraine & raynauds & Vascular Dysregulation, check endothelin levels?? Suspected TIA
I have had a recent consultation at the stroke clinic, classed it as a suspected TIA & to continue with my blood thinners.
I've been given folic acid for my anemia which doesn't seem to be helping referred to ENT For sphenoid Sinisitus, & I have recently been for a oral cancer check with my dentist & I have 1 benign tumour & 2 abnormal that need a biopsy.
Recourring mouth ulcers & abcesses.
Seeing the rheumatologist on the 11th April 2017.. first inital app but I've waited years ! I have so much Love & appreciation to AEC they have done more for me in the last 3 weeks then my doctor has done in 7 years! I feel lucky.. it's taken it's toll on my whole body from my eyes, throat lungs heart bladder kidney limbs, I'm now suffering with the migraines but I feel like things will be ok from here.. I've suffered in silence for a very long time & I feel glad that I'm being recognised & treated like a human being. If anyone out there knows of what I am going through please please reply, my family & partner & son are very supportive but it would be a blessing to hear from a soul like mine. Thank you for taking the time to read all of this it means More to me than you know. X