very sick,not diagnosed,looking for insight

Posted , 12 users are following.

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. Overall I feel very toxic and poisoned ( I know I am not poisoned just feels that way)

Thank you in advance 

 

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  • Posted

    Hi balia9595

    Have you had your serum B12 checked if not get it checked if you have B12 deficiency it will make you extremely ill with many of the symptoms you describe.....best wishes keep us posted....

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    • Posted

      Sorry, I should add, that is if you have Lupus....I cannot diagnose something like that of course. And lots of auto immune diseases have these symptoms.

      You need to see someone who can properly diagnose you. A specialist. Maybe a rheumatologist. 

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    • Posted

      hey Margaret, is there a test to diagnose polymyalgia rheumatica? I am a little scared because i do have the symptoms plus more, but what scares me is that I developed a pain in my skull abut month and a half ago. Witha that pain I als have eyesight disturbances.I am very scared of giant cell arteritis, it tends to go hand in hand with polymyalgia rheumatica. I know this disease mainly affects people over 50 and I am only 26 but there have been cases with young people having it. I went to an eye doctor, he checked my eyes and said that my eye vessels are okey and not to worry. ( because GCA causes blindness), I had MRI on my brain and brain vessels but that doesn't rule out GCA. Doctors laugh at me when I mention it, they say that I am too young and it's nearly impossible to have it. My headache is 24/7, sometimes better,sometimes worse. 

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    • Posted

      Hi balia...I used to think I had gca but my specialist has said no. Several times we had that discussion. The problem is gca is a form of vasculitis as is Lupus as is Behcet's as is Sjogren's and more. They can all have cns involvement and cause the kind of migraine syndrome you describe. My feeling is it is not gca but ...as my symptoms did....it mimics that. With Lupus and Behcet's they both 'mimic' the symptoms of other diseases.

      You almost certainly don't have Behcet's because that comes with specific ulceration. Makes it easier to diagnose. With the others like Lupus less easy to pin down and pr too. Blood work is helpful but sadly not definitive in this area. This is why they are currently trying to develop a blood test in Cambridge for diagnosing these conditions.

      You need a good specialist. Where are you based?? Are you in the UK?

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  • Posted

    hi for sure yes you could have Lupus. 

    I have Behcet's which is very similar but not identical. They are both forms of vasculitis with a lot of overlapping symptoms. Mine were constant really. So yes it is misleading in a way to say they come in flares. They can do. And they can get worse or get better. 

    The pain in your chest and difficulty breathing are symptoms a lot of us get. It is usually due to one of two things. Either costochondritis or peridarditis. 

    It is very difficult to get these illnesses diagnosed to be honest. I struggled for years to be diagnosed. 

    Everyone says there is nothing which causes all of those symptoms. Well there is. Have a look at my profile, my symptoms are on there. 

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    • Posted

      I am very sorry you struggle with an autoimmune disease too and thank you for replying. My brethlessness comes from a tightness in my stomach area,near diaphragm, I can feel it is not related to my lungs,I also had my lungs and heart checked and they are ok thankfully. It feels as if my abdominal organs are swollen and are pressing into my diaphragm and stomach. I will insist on gastroscopy because I can't deal with this thing pushing my organs.It might be some sort of an stomach issue but I don't have pain,but nauea,diarehea,constants shortness of breath and elevated heart rate. Blood pressure is normal at least for now.

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    • Posted

      I also think my illness is in the vasulitis type, because of all the prominent swollen veins and ateries in my whole body. Even my palms look like vampire's palms,full with visible blue arteries,it's scary looking but doctors brush it off. They say that a otlot pf people have pale skin,but I didn't have visible veins until I got severely ill.

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  • Posted

    have you been checked for Vasculitis?

    Vasculitis, Raynaud's and HRA or Lupus is quite common trio...

    Can you travel to another country for diagnosis...

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    • Posted

      I had the ANCA test but it was 6 months ago it was negative, ANA is positive but not enough for Lupus, I have Raynaud's. As for the vasculitis, I had MRI of my blood vessels in my brain for systemic vasculitis and it was negative too. Also had CT scan of abdomen with contrast-nothing there.

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    • Posted

      So how is vasculitis diagnosed,if a CT scan and MRI can't show it? i don;t know what to do anymore. Doctors won;t diagnose me with lupus either, cause I don't have the criteria ;/

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    • Posted

      I also don't have a history of symptoms prior to last Noveber when I got very sick all of a sudden. Not a gradual set ot symptoms like most people with lupus, it all came all at once.

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    • Posted

      Well that in itself is part of the history of your illness. Lupus is a form of vasculitis.

      It took me a year of seeing an immunologist to be diagnose. Symptoms are observed and logged with blood test results. It is a complicated illness. You need to see a specialist in that area to diagnose you properly.

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