Please help. Suspected long term lupus CNS vasculitis. In a really bad way

nh_user_1306177
Wed, 08 Apr 2020 04:49:54 +0000
Allergies, blood and immune system

Hi,
i can’t express my thoughts well so please excuse this not sounding planned. I’m trying to be as accurate as i can despite pain I’m in

I’ve had symptoms for a long time, i was referred to a neurologist about 2 years ago, they did a physical check & mri was clear, gave me pregabalin and told me i might suffer with a continual migraine and migraine aura, its likely not ms, and sent me on my way
i moved house and due to distance and feeling exasperated and exhausted i gave up visiting the neuro, i felt fobbed off, yet could barely see, lost vision and have become depressed. Couldnt walk far i always felt fragile, every day malaise, off feeling, physically cannot continue I’m in continual pain, and i can’t think. Cant express my thoughts or emotions well (started with flares of severe brain fog about 10 years ago)

i havent improved. i am right now in a terrible way.

I have tried phoning the gp (requested a blood test however due to the coronovirus outbreak i cannot get an appointment, just one telephone consultation after my blood test results are back and being told i need an eye test first ( i had one last year at they couldn’t find a problem, were blase to say the least and the dr said it was unlikely I’ll go blind as these “symptoms have been persistent for a long time”)

i keep slurring my words and waking up not knowing where i am, who i am, everything is barely recognizable i feel totally disoriented day to day, as well as drowsy and just not with it and fully alert its like i cant wake up. The problems worsened, where I’m honestly not functioning at all now, can barely move i crawl out of bed. Cannot eat very much, and have stopped for days at a time due to plain exhaustion these symptoms are causing. I need post it notes to remember what i last did or said, sometimes i forget mid sentence and the problems been worsening. I have searing pain in my limbs all the time and fatigue which doesn’t help

When I’m out, my vision blurs worse, I’m starting to miss the the pavement and fall off the curb when I’m walking, seeing stars, thousands of eye floaters now can’t see cars well crossing roads, and my cognitive problems worsen i can’t think for the life of me, cant speak without sounding drunk and come home with red, inflamed and swelling, hands and feet, searing pain and crushing sensations, my co ordination gets affected, clumsy and cant feel my limbs, i don’t feel fully awake and alert, my visions all dark, lack of visual acuity my eyes are inflamed now daily, all i know is i have an overwhelming headache. I feel terrible and its been worsening over the years

The continual headache has been continually worsening for the part of 10 years now, my hearing is muffled which is I’m having problems explaining to the gp over the phone because if my thinking problems. I have severe personality, cognitive changes all the time, mood swings, rage even & mild psychotic symptoms. I get very irritable and its so unlike me. I find it unbearable i don’t feel right at all If the headache even eases off slightly the described - lessens. There’s some clarity
When i come home the problem id be physically shaking with a tremor in the face, entire body, hands and my lower arms it used to ease up after up to 5 hours, or several days being bed bound from fatigue after my body was unable to take a walk, heat used to make it worse

Yesterday i had to walk to my drs to collect a blood test form. I picked up a sandwich from the shop, came back home. The tremor in my lower arms was so severe (felt like a vice) i couldn’t hold the food to my mouth to eat it, i am extremely frustrated by it

i have an all over fine shaking, more noticable in flares

I’ve had chronic fatigue, and flares of a racing heart often when i sleep. So 155bpm on waking this used to happen in my late teens, had another bout in my mid twenties for no reason. At 30 i have mild episodes, i occasionally wake up with a racing heart and often dismissed it

I’ve had daily night sweats for at least 5 years where its profuse, and severe hives episodes lasting weeks at a time. My skin hasn’t stopped crawling all over for this period of time. Reduced me to tears and I’ve tried everything from changing my washing powder, changing my diet, skin care products to no success, over the counter antihistamines (provided short lasting relief but they only sell tiny tubes and its been affecting my entire body including face)

This is only one skin issue. I’ve suffered swelling in my hands and feet & burning sensations from my mid teens (visibly red) a very long time, people used to comment on this. And searing pain is only how i can describe it. Often upon exercise, sometimes doing nothing at all. it’s sporadic. But the pain has worsened and the frequency recently. I am now waking with a numb face (can’t always speak and get my words out) numb hands, lower arms and feet. it doesn’t subside but the symptoms seem to flare at night or when I’ve been asleep. The numbness seems to affect my taste and smell where its lessened I wake up with flares with painful lungs when i inhale it feels like severe dryness that’s causing the pain, sometimes coughing, and my throat is so dry i have voice changes that’s extremely noticeable to me, a hoarseness

In 2015 i became ill with what i thought was a virus. Fever & chills, swollen lymph nodes on my neck, vomiting, nausea, a blotchy bright red rash that started on my face and neck and worked it way onto my arms, legs, hands, and an unbelievable headache and the worst muscle pain and aches for about 6 weeks. The rash didn’t start to disappear until 3 months later and i still had flares for about 2 years. The fatigue was knockout as if i had been hit by a train. The itching has never stopped, nor have the night sweats

I’ve also lost weight not intentionally i have dropped 4 dress sizes in 1 and a half years. Sometimes on waking up I’ve felt nauseous and headachey, eyes inflamed. I’ve noticed in the mirror with my terrible vision where i can barely see myself in the mirror, for several years on and off an intense pink rash. On my face, notably around my cheeks and nose. It looks like sun burn. Sometimes my heart would be racing as most mornings. i can hear my heart pounding, daylight sensitive and find mornings unbearable.
I suffer with dry mouth, subsequent teeth decay, brittle thinning hair that’s falling out, it looks fuzzy and like cotton candy, a good volume has fallen out over the years throughout my twenties
Dry skin. The odd mouth ulcer.

I’ve checked myself for lyme disease recently (negative) blood sugar is normal. Even tested myself for HIV (negative) as i was at my wits end with these symptoms that have ruined my life and had little input from the drs the odd time that I’ve made an appointment

I had my bloods done last year for a general check. Apparently CR P was fine, so apparently this means there’s no inflammation. Kidney function fine, and the only issue was mild anaemia. (resolved after treatment)

Tests done several years ago were slightly abnormal apparently this was nothing to worry about. Low WBC, on two consecutive tests but apparently this is common place if someone’s a bit run down?

I’ve included photos of my hands and how they look on a day to day basis, the rash and redness is more intense in person!
Please excuse the swollen hands

I’ve not gotten photos of the other rash I’ve sufferer that looked like red blotches

I’m sorry about my grammar due to not feeling well

After walking 4 miles after being told by tge DR they could do a blood test at the clinic, come straight in. The receptionist was difficult and said i could have the form ( lockdown at the clinic) they told me they could no longer do bloods, and the hospital 8 mile walk away were nor taking general blood tests because of the coronovirus. The receptionist didn’t listen, i insisted i couldn’t wait several months seeing as I’ve lost a lot of my vision and in a really bad way, they said ring the hospital to get bloods booked. They’ve missed an ANCA test off the list so i asked them to change it if i am asking to be tested for lupus or vascular issues. The DR changed the form.

I am facing a 4 mile walk back to get the replacement form again from the gp with all these symptoms Then bloods at hospital if i can even book that, i feel too ill to do this walk. i don’t drive, have no one to help

I feel like im on deaths door if I’m straight. I can’t get a taxi due to the coronovirus outbreak

How do i go about this? Sorry this is long not organized. I’m hoping someone reads this message x thank you

2 posts - 1 participant