in june literally a month before my 27 birthday i became ill. i went from being a party fun loving mum of three, to being in a wheelchair.
i had full arthritis, myocarditis, mouth and genital ulcers. (my partner doesnt have herpes and has never had anything despite no protection- we have been together for many years)
the pain rotated around my joints for around 12 weeks. iv been on 1000mg naproxen. last fri i was swapped to 50mg diclofenic and have been walking again...yay.
They suspect either Bechets or AS (ankolysing spondylitis)
Iv had constant mouth ulcers since june, about 10-20 in my mouth at any point, along my lip, cheeks, tongue, throat. and monthly bouts of genital ulcers/warts? that are very painful.
I was admitted the second week in July at the royal with suspected Rhuematic Fever, they then decided that this was not the case. I informed them about relations that have AS and Behcets. (mat gdad AS, Mat Gmum BD).
I was taken to the infectious disease ward i was then discharged four days later as i didnt have a sore throat? i never went in with a sore throat i went in with ulcers on my throat and other symptoms.
i had a ref to a rhuematologist 8 weeks later.
My drs started me on Naproxen and omeprazole the day after i came out of the hosp so early july.
8 weeks came and i excitedly went the rhuemy at broadgreen hoping for some answers. It was his first day... sadly for me.... he felt my knees once. Said its not mainstream althragia, and that it should go by itself. i mentioned my other symptoms, headaches, sens eyes, ulcers psoriosis and he stated it would just be an over reaction on behalf of my body.
I mentioned my relations 1 mat gdad, four mat aunts and 3 mat cousins having AS and my pat nan having bechets. he stated women cant get it and their rhuematologists were mistaken. he discharged me with a prescription for 10mg Ametripteline for pain management.
I went back my own drs who re referred me to rhuematologist, but at Aintree as broadgreen and the royal are linked hospitals. my appt was for the 26th sept, they then sent a letter saying they had moved it to the 7th November. I had to wait that long!!!
Last weds i lost vision in my right eye for just over 5 minutes. (weds the 19th sept)
on the fri i went to my drs. he examined me. changed my meds from Naproxen to Diclofenic and told me to go to st pauls eye hosp.
I went the eye hosp and they said i needed an appointment as soon as possible (today- fri 21st sept). They examined my eyes and prescribed Asprin 75mg daily.
Monday17th sept i went tot he cardiologist. iv had a 24 hr tape and several ECgs as an inpatient and out since june. apparently my heart is beating faster and then goes slower and so on. dances to its own beat as he put it. he asked whether it was affecting me in anyway and obvs i didnt at the time think it was linked so said now. he did say i could have beta blockers however they have side effects and if it isnt debhilitating in any way then it was down to me. i declined as obvs i wasnt very aware tbh and he discharged me. he had aid the chest pain didnt sound worrying.
today came and i went the eye hosp in the royal liverpool hospital again. They did the fluoreceucin test (dye into blood) all the blood vessels behind my eyes were seeping and bursting. They immediately suspected a TIA. He telephoned every specialist that had seen me for a conference call then walked me round to the Acute Medical assess Unit.
I had a vascular scan of my throat done. Other blood tests. (6 diff needles). and the head Rhuemy from the hosp came down and has given me an appt for thurs. Im not under the AMU and the Rhuemy and the opthamology dept long term. i have to attend monthly and then they will see how my care goes.
I have been put on 300mg Asprin a day for 14 days then to go down to 75mg. 50mg a day predisone (steroid), 40 mg Omeprazole. and i am still on the Ametripteline 10mg a day with a view to increase. im really nervous now every time i get the chest pain that iv been having lol but i guess thats only natural tbh.
Does this sound similar to people here?
Iv had a hell of a time since June. I cant say its appeared from no where. iv had IBS style issues all my life, iv had the camera down n up more times than i can remember. I had a stomach ulcer at 14 yrs of age. my eyes are sore constantly and feel like pressure type headache behind them. iv had constant migraine, however iv suffered with migraine in the past and was on ametripteline then as i had it with aura (floater and swollen eyes then).
Iv obvs recently had heart probs for the first time. but iv always had sharp chest pains i put down to my asthma and ignored. Iv always had back and hip pain on a constant basis.
But iv also had periods of singular joint pain, like a sore kneee or wrist for no reason and they would just say swollen but must be a sprain and so on right the way through my childhood and teen years. iv had psoriosis in ears, brows and on scalp as long as i can remember. and iv always suffered from severe mouth ulcers, but this is like something diff, they will die down for a day and then flare up for a week die down for a day and flare up. They are so painful sometimes its all i can do to drink soup through a straw.
im just so tired now and really want some answers.
it was my dentist that suggested bechets as nan had never admitted to it until i mentioned it tbh. shed been too ashamed to say she had a disease.
if anyone could give me tips or any insight as to whether this sounds like bechets id appriciate. Im like a walking rattle... you hear me come before you see me!