Auto immune diagnosis journey over a year later...
Posted , 3 users are following.
Hi I am a 26 year old female, slightly low BMI (typical as tall skinnyness runs in the family) and I have been having paticular symtoms for 2 years now.
It started with night sweats, I am generally a cold person, waking up soaking wet with sweat, I am incredibly tired all the time, and get very aggressive (Apparently) when woken up, along with this I suffer with palpitations, high anxiety levels, Bruising ridiculously easily, constant cold hands and feet, aching joints, my ankles crack to the point where sometimes it aches so bad I cannot bear weight until it cracks, hips pop out sometimes, bad mouth ulcers, breathlessness, occasional chest pains (cant breath in all the way until it subsides) and had one out burst of what looked like eczema on the palms of my hands - was blistering and bleeding for around a month.
I started having blood tests last year at my old doctor, they said it was anxiety - I do suffer with this but I don't have anything on my mind that would make me ill to this extent, they made me have blood tests and said I had high blood pressure too, which i was given beta blockers and sedatives (I never took the sedatives as I don't think i need them? sleeping isnt the issue) my blood tests came back with a really low white blood cell count, these tests were repeated for a year and I didn't get anywhere, when the rash on my hands started and I was told to basically just put up with it I changed doctors. having never suffered with it before I know in myself it wasn't normal nor an allergic reaction as nothing had changed.
At my new doctors I have undergone a 24 hour heart monitor - this came back ok I think I am back in 2 months for the results (I dont get palpitations all the time so I wasn't worried) and the bloods I had done when I changed he said came back ok but my B12 and Vitamin D levels were far too low and I am on high doses of these.
I also had a medical at work and they made me ring a nurse straight away as my kidney function was quite bad, I did another at the doctors and they said this was ok (over the phone - haven't seen him yet) But my period was 2 weeks late and have since been spotting (I have never suffered with this before either? I could even tell you to the date and time I have always been that regular previously)
So I am currently waiting to see him again - but I joined here to see what people thought as I am worried this doctor will do the same.
I am worried as because its a collection of symptoms that I seem to have got used to and sort of got used to putting up with them even though i know its not normal at 26 to feel like this when I eat pretty well and I exercise regularly. I feel like it must be something auto-immune as I have heard of similar symptoms
UPDATE!! 06/06 Right - a long time since I replied but here goes.
I have since gone Private, after the night sweats have increased, I get temperatures from month to month as high as 39, and can never get in at my doctors when I am at my worst.
I managed to 3 weeks ago, and the eyrithrimicin he prescribed me made me so sick I ended up in hospital on a drip.
I saw my GP as soon as I came out of hospital and asked for a private referral, he said a rheumatologist would be best and I am awaiting an extensive list of blood tests.
The main issue I am concerned with now is I have had this for 4 years, my symptoms "flare up" and i know if I have these bloods done tomorrow I feel ok at the minute so they won't be as bad as they previously have been, but when I have managed to get into my GP and have tests, and my ESR levels are high and kidney function is poor etc they just say it's a "viral infection" despite me telling them this happens on a monthly basis and it is getting worse.
I'm hoping the specialist I am seeing will recognise my genuine frustration with feeling 102 at 26 years old and help me finding something to help me. Especially since I'm pretty sure my hair is thinning in areas too now.
I guess I am just worried that the specialist will see my bloods and say it's a viral infection like all the others and I will be stuck feeling like no one believes how crappy I feel...?
0 likes, 3 replies
lilian05079 beaface89
Posted
I have recently been diagnosed with 'borderline' lupus and am waiting to see a Rhuematologist.
My symptoms are high ESR.....butterfly rash across nose and cheeks which flares up along with joint and muscle pain.....ulcers in nose and mouth...dry eyes....i have 9 of the 12 lupus symptoms (google12 lupus symptoms)..... i cannot say if i definitely have lupus until it is confirmed by the Rheumatologist who has a six month waiting list.
In the meantime my doc has put me on steriods to ease the muscle and joint pain but she is not happy doing this but cant treat me for lupus until my condition has been confirmed by the Rheumatologist........I hope you also get a true diagnosis soon so you can get treated for it....its no fun being in limbo not knowing what your health condition is.....best wishes...
lilian05079 beaface89
Posted
I have been diagnosed with 'borderline' lupus....my symptoms are..butterfly rash across nose and cheeks....painful joints and muscles.....ulcers in nose and mouth.....very dry eyes...i have 9 of the 12 symptoms of lupus...you can google '12 symptoms of lupus'.....I have to see a Rheumatologist to get it confirmed.
In the meantime my doc is treating me with steroids which she is not happy about she has reduced them from 15mg to 3mg....these are to reduce the pain in my joints and muscles..and they have..she cant treat me for lupus until its confirmed by the Rheumatologist who has a six month waiting list.
My immmune system is very low I pick up viruses from others but with me they turn into infections. I had one recently and am on tail end of taking antibiotics.
I hope you get a diagnosis soon as I hope to get my diagnosis soon..its no fun being in limbo not knowing what your health condition is....best wishes....
lilian05079 beaface89
Posted
Im sorry for the double answer!...first time there was a problem on the site and it appeared my reply didn't go through...so I tried again ..the answers are slightly different but with the same intention to make you aware you are not alone with this 'lupus' problem.........best wishes for a speedy diagnosis...