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Posted By : Milenita - 12/5/2016 8:41 AM
Hello guys, I want to apologize in advance for the long post but I would really appreciate some insight and help, I am struggling really badly.
I am a 26 year old European woman and have been very sick for a year now. It all started last November after my gynecologist gave me a shot of progesterone ( due to high prolactin levels and my period disappearing). The very next day I woke up in panic,covered in sweat,felt like my head and body were on fire and with extreme nausea. I brushed it off to an allergic reaction. But then I got sick with what I thought was the flu-sore throat, sinus pain and chills. These 'heat attacks' continued almost every night ( still some nights i have them) and all day long I would feel as if I had the flu.I had staph bacteria in throat and nose and was put on antibiotics,they did nothing, changed a lot of antibiotics,nothing changed,but the cultures became negative.After a month feeling like this I developed joint pain in almost every joint in my body,BONE pain in my arms and legs,sometimes in ribs, low grade fever, stiff and achy muscles,still had the sore throat. I became bedridden because I was very very weak,fatigued, in pain. Visited a lot of specialists, nothing was ever found except slightly raised ESR levels, ANA, Anti CCP, RA factor were negative at that point. My health continued to decline,I got weird looking acne all over my back and face but doctors brushed it off to hormonal imbalance. For 2 weeks straight I had a sunburn redness on my face but my ANA was negative so doctors assumed rosacea. And actually I did put a rosacea cream on my face and it worked as long as I was putting it on. Still bedridden, my whole body hurt,even my veins all over my body became prominent and hurt,my joints started cracking with every move. I have so many symptoms that most doctors will say to me 'Go visit a psychiatrist,there is no illness with so many symptoms" . After 6 months of feeling very sick and so many new symptoms ( hair loss, poor circulation,muscle twitching and weakness, internal tremors,had painful lymph nodes under armipts without them being swollen but gone now, constant flu like feeling, low grade fever, chills,joint pain, vein swelling,sore throat, extreme weakness,dizziness, blurry vision, brain fog, insomnia, burning palms and feet, rashes on my hands that will come and go withing 2 hours time,mainly on my knuckles and sometimes on my arms) I also started getting blue nails and numbness in my fingers. Had all kinds of neurological tests, MRIs, blood vessels imaging ,heart,lungs checked..everything fine. Till I decided to do my own testing again and that time my ANA was positive:1:320. Anti CCP positive too ( for rheumatoid arthritis) so I was hospitalized in the rheumatology department to get a diagnosis. At that point my anti ccp was borderline and ANA was negative, they did capillaroscopy and diagnosed me with just Raynaud's . I had a skin biopsy,also called here 'lupus band test' and it was inconclusive, as they said:'' A little immunofluorescence here and there but not convincing enough for a diagnosis.''Also, my kidney creatinine in 24 hour urine was low, so my kidneys are not functioning very well, and blood creatinine is on the upper limit. But it wasnt't 'bad enough' to be taken seriously.
For the last 6 months I developed a very bizzare and scary symptom. I can't breathe because I feel as if I have an 'internal corset' around my ribs. This is a 24/7 feeling, I have shortness of breath, extreme weakness in my upper body muscles from that, bloated belly,extreme sweating. Also from that thightness in my stomach I developed daily diarrhea and acid reflux to the point I can't eat anything without having the nausea, diarrhea and 24/7 struggle to breathe. Had lungs checked with an x-ray and spirometry, everything is fine there and my diaphragm is not paralyzed thankfully( because it feels that way and it was a struggle finding a doctor who would not laugh at me and actually check my diaphragm with ultrasound). I also had a CT scan of abdomen with contrast,ultrasound and barium swallow x-ray which revealed only GERD. It continues to get worse, as if my internal organs are swollen, can barely breathe, even when not moving still can't breathe cause something is pressuring on my diaphragm, still have daily WC problems and constant nausea.It also started I guess pressing on my heart cuz I started getting heart palpitations that go up to 160 bpm.And my heart rate is always raised since I got ill last year. My resting heart rate now is 80-90,when I get up on my feet it goes up to 130. Another new symptom is for the last month and a half I have constant headache,which started with severe vertigo but the vertigo went away,now just have the constant headache,again MRI was done-nothing there, just found the vestibular system was affected a little.Things like ibuprofen do nothing for the headache. I keep getting worse but my ANA is now 1:100, other immune tests like DS DNA, anti Ro, anti Smith and etc. are negative, C3 and C4 withing normal ranges, CRP normal, slightly raised leukocytes and raised ESR, normal liver functions,blood sugar and no infections found. I am sorry for the very long rambling and excuse me if my english is not perfect, I am from Bulgaria, but I do feel like I am dying. I wanted to ask you a few things. Firstly, can it really be Lupus because I have a lot of text book like symptoms, but for me it is not in flares. Some symtoms are in flares, like the low grade fever, I can have it for 2 months, then not for the next month, and burning sensation and rashes are in flares but everything else is a constant thing.Also, for me it wasn't gradual like for people with lupus,having joint pain for a year then something else, for me it all just crashed on me and made me very sick. And I keep getting worse, I read people with lupus have flares and once the flare is gone they feel better,I don't get that. I feel awful all the time, I can't function or walk my dog, not due to the pain ( the pain is bearable) but due to the very sick feeling,breathlessness and weakness. Are there people with lupus that have similar symptoms that are constant? And do any of you have the weird breathing/thight feeling around ribs and what can it be?-that is the most frustrating symptoms I have and I am very scared. I really hope someone will read all of this. I am sure I forgot a lot of symptoms. The progesterone shot was the trigger for my unknown illness and from what I read, lupus is involved with hormonal/metabolic processes because it's no coincidence that mainly women in childbearing age get it and it gets worse after giving birth. That is the main reason I think I might have it. Btw, I forgot, my prolactin levels have been within the normal ranges for the last 8 months but still not regular menstrual cycles.I even had several blood cultures,so many tests for all kinds of viruses,parasites,tropical illnesses,all is negative. I just feel as if I am poisoned and overall very toxic ( I know I am not poisoned,just feels that way)
Thank you in advance

Posted By : couchtater - 12/7/2016 12:28 AM
Your English was very good.

You sound like you have been through a hard time. In USA we have a list of 11 indicators of Lupus that our rheumatologist go by to diagnose lupus. You must have atleast 4 of the 11 to be diagnosed. Positive ANA is only one of the 11, because the number rises and falls.

If your doctor is only going by your blood work then he's not doing right. He needs to look at the whole picture and check off the list. If he won't then find a different doctor.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

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