Little to No progress made

[LauraMk30]

Hey everyone, I hope your doing as well as you can be.

No cardiology

No Dietitian

No colonoscopy

As I’ve written above no progress has been made since my last post 2 months ago.

Chest pain : I had my first episode on Tuesday 24th April at 1am in the morning. I Was awoken with a hard thud in my chest & strong palpitations, ripping upper back pain, chest pain, that radiate into my neck, jaw & left arm. Cold sweat, dizziness, retching nausea. I know I should of called an ambulance then, but I tried to play doctor myself & see it through without making a scene in the early hours. It lasted for around 5 mins which felt like forever. After an hour or 2 I was left with a dull aching jaw, & upper back pain.

Next day I felt wiped out, physically exhausted, & just making the bed over was tiring, I slept most of the day away and the next, Friday early hours 3am I awoke with a bang on the chest by my partner he’d accidentally thudded me during a nightmare, as he rolled over to go back to sleep i was winded & in shock, tender on the chest & breast as you’d expect, after an hour of getting back to normal I nodded off to wake up again at 5 with crushing pain, this time I couldn’t catch my breath, started to panic which made it worse, each breath tore my back, my heart rate was 150bpm I had to take my clothes off as I was sweating so much, moved to a different position to see if it would ease pain & nothing worked, my jaw felt like it was weighted down, along with my neck, I couldn’t talk as it felt quite constricted, chest pain was deeper this time round & painkillers didn’t touch the pain, it lasted almost 15 minuets & I couldn’t get back to sleep, I couldn’t shake off the feeling this time round & it just lingered with a deep pressure around chest upper back & shoulder. I went for a asthma review on the morning of Friday 27th, my peak flow was 250, & I couldn’t give a proper deep breath. Nurse said my symptoms were not due to my asthma. And to get it checked by the doctor. I made an emergency triage appointment & as I rang to confirm the time of 4pm, the GP that was due to see me had already left.. so I stayed in bed & my parents came up to check on me & said that I looked grey in Parlour. So they called an ambulance. I said I was feeling ok, & felt like after resting a bit more that my heart felt normal again, but they insisted.

Paramedic checked me over, heart rate was 98bpm which is quite low for me, slight postural hypertension, ECG’s were normal. Everything went back to being umm normal..

I didn’t want to go to hospital as I knew that I wasn’t experiencing an episode, & I just needed to rest. Paramedic said a check over would be good so I agreed and went to hospital.

X-ray was requested for pneumothorax

Clear

Bloods : normal.

Doctor said that I am fine, & nothing is abnormal today, they were not aware of my “COMPLEX” health issues at present, paramedic said he’s “never met such a young patient with so many Complex issues yet no progress of diagnosis” I felt quite embarrassed.

recently had a blood result back showed that I have serum folate deficiency anemia low Levels at 2.2 I’m waiting AGAIN, i was told due to having the folic acid supplement prior it really wasn’t beneficial so I’m allowed injections instead.

Hair is still thinning shedding & I now have alopecia.

I’ve been struggling with infection after infection, prone to it more than before.

Oral side of things, my wisdom teeth removal healing process has been brilliant, but recently noticed a few red spots on the roof of my mouth. In regards to this I’ve got one swollen gland on the right side of my neck that hasn’t subsided, it’s quite visible through the skin. Like a little ball lump. Stiff neck goes along side.

Had results for oral lesion biopsies: benign Melanotic macule.

The hyper-pigmentation under my tongue & floor of mouth is benign also, but dentist & oral max fax team want to keep a close eye on it for any abnormal changes etc. Good news

All in all my long winded post is basically a confusing update as I’ve not seen any consultant specialist since my last post, the balls stopped rolling & im no where better off,

Mental health side of things have been taken seriously. I’ve been diagnosed with C-PTSD, and been referred by a 2gether mental health team called the trauma clinic. I’ve been receiving online 1-1 CBT psychotherapy, my therapist has made me aware that I need 1 year in half intensive stabilisation treatment & therapy. So the trauma clinic is my next avenue. My new GP has agreed & written to them too.

Somethings I’ve made progress with but the main important priorities haven’t been met.

Excuse the long winded update, but just letting you all know that I’ve gone right back to the drawing board.

I know it’s a slow process but the doctors I’m dealing with seem to have SLOTH MODE on permanently.

I don’t want to be labelled complex, I just need a bit of compassion & understanding. A little time spent goes along a way for someone like me. I’m getting to the point where paying for private health care is the only way I will get a diagnosis...