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
0 likes, 49 replies
balia9595
Posted
Yeah, but it's very persistent, no remissions of any kind
margaret22116 balia9595
Posted
I didn't have any remissions for years.
Brittcrisp balia9595
Posted
Brittcrisp
Posted
margaret22116 Brittcrisp
Posted
Brittcrisp margaret22116
Posted
I have been to the rheum 2 times and had tests over the summer. I been feeling better since august but i still feel like something is lingering and getting worse so im going back to the rheum on friday
he will think im crazy bust i dont care!
margaret22116 Brittcrisp
Posted
Yes they can be hit and miss. I was finally diagnosed by an immunologist.
I never have positive blood tests just raised inflammatory markers esr and crp. I did see a rheumatologist at one time but he wasn't much good to me either. Maybe see a different specialist.
lilian05079 margaret22116
Posted
A definitive test for lupus is a dsDNA test have you had this test? I had this test because my ESR showed borderline lupus..but the dsDNA test was negative and i was diagnosed with polymyalgia rheumatica...if the dsDNA comes back positive then lupus is diagnosed by the rheumatologist.
After being diagnosed with PMR it was also discovered i had B12 deficiency...i had 6 loading B12 injections and have 1 every three months now...my ESR levels are now normal i have no more pain and i feel really good...i am convinced that B12 supports our immune system......and the B12 deficiency caused my immune system to malfunction and thus caused the pain i had which was diagnosed as Polymyalgia Rheumatica......
margaret22116 lilian05079
Posted
Hi Lilian. I don't have Lupus but Behcet's diagnosed 13 years ago. I have only recently developed b12 problem which may be result of a drug I was prescribed for Behcet's.
lilian05079 margaret22116
Posted
Hi margaret22116
Yes, some medication can stop B12 absorbing through the stomach and the ilium. Also, the protein 'Intrinsic Factor' which is used in the stomach to help absorb B12 declines as we get older and our B12 is not absorbed as it should be thus we become B12 deficient. Also, not eating foods containing B12 such as meats. eggs, dairy product regularly. It is not found in veg and fruit. However, there are B12 patches that you can buy online which are very good. B12 and other B vitamins are vital for our wellbing I don't think many people realise this. I think docotors should test their patients B12 levels when patients go to them with symptoms of weakness, poor balance, memory loss and loss of brain clarity to name but a few symptoms of B12 deficiency. It would save the NHS money because most of the time they send patients for this test that scan which costs the NHS a lot of money. Carrying out a serum B12 blood test and having to perhaps give the patient 6 loading shots and then 1 every three months would be far far cheaper. A B12 shot costs 55p x 4 per annum = £2.20p. 6 loading shots 6 x 55p = £3.30p + £2.20p all told £5.50p. B12 is essential for the immune system to do its job....
hope I haven't blinded you with science..lol....best wishes..
Brittcrisp lilian05079
Posted
I am not sure exactly if my rheumatologist did a dsdna test. All i lnow is he did a ton of blood work and when i got the phone call they said i do not have lupus. My symptoms are more of a weak exhausting fever like type of a thing rather than pain. But i am going back friday and will have lots of new questions for him thanks to you guys
balia9595 Brittcrisp
Posted
Hey Brittcrisp, I am so sorry you had to go through this, I feel like my body is shuttng down on me too, it's been over a year now and I don't get any better. I also had to go to ER several times because I felt like I was dying.I feel soooo ill all the time with very scary attacks that feel like dying. Yours sounds like a typical autoimmune tho.You had a flare, got better,now happening again,really sounds like autoimmune. Sometimes it takes time for the autoantibodies to show in the blood work. Mine,unfortunately, is not in flares.It's 24/7 for a year now. Don't have social life anymore cuz I can't even breathe.
Today I went to iridologist (because I lost faith in the medical system). She told me that I have a collapsed immune system and I am on the verge of lupus. She said I alreasy have lupus-related changes in my skin. Also, that my athritis is not RA but is reactive.But who knows... I don;t know anymore.I can;t breathe because of that stupid tightness in my stomach, she said it's muscle spasms,something like locked muscles and it's because of my nervous system but I don't know if I buy it. Everywhere I go, every doctor medical or naturopath says that I am fine but I am not. INo healthy person has fevers and can hardly walk.
Keep taking blood tests for ANA,if it is autoimmune it should pop up at some point.I do have a positive ANA but it took 6 months to show in my blood work.
balia9595 lilian05079
Posted
hey Lilian, 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.
margaret22116 lilian05079
Posted
I think this area is overlooked in general. I have suffered from low potassium and vit d in the past and these deficiencies have major impact so I understand where you are coming from. Thanks for your input.
lilian05079 balia9595
Posted
My Rheumatologost diagnosed PMR by my blood tests and what symptoms I presented with:
My ESR was high and ANA was positive
My symptoms were:
Pain in neck , shoulders, upper arms, hips, buttocks and thighs all on both sides. All muscular pain. Severe pain at night in bed when turning over on either side. On getting up the morning the pain was very intense and lasted for 3/4 hr to 1 hr after that the intenseness would subside. The pain would remain niggling all day. Along with it I was weak with extreme fatigue, lightheadedness, brain fog and vety bad memory. The intense pain would then return at night and every morning for 3/4 hr to an 1hr every day.
These symptoms along with my blood tests brought my rheumatoligist to the conclusion that I had Polymyalgia Rheumatica...I was then treated with prednisolone because as you know if not treated PMR can lead to Temporal Arteritis. At present I am almost off the Preds and the symptoms have not returned. I feel good and after having had my B12 brought to normal levels for me... im now living a normal life......hope this helps..best wishes...
lilian05079
Posted
Also balia the dsDNA test was negative. This test was carried out because my ESR test showed borderline lupus......as ive already mention dsDNA is a definitive test for lupus.....
balia9595 lilian05079
Posted
I also have positive ANA, high ESR ( but not dangerously high) and negative dsDNA. ESR shows inflammation, it does not provide any information on lupus,it just means you are inflamed ( can be autoimmune,can be a virus/bacteria,anything basically). My skin biopsy for lupus was inconclusive,so I might have it,or at least I am headed towards it. May be I don't have Polymyalgia Rheumatica because I have a lot of other symptoms besides the muscle pain. But I do have muscle pain, not that intense anymore. In the beginning of m illness it was like yours, very very severe muscle pain and stiffness but now it's here and there and not that bad,but everything else remains. These autoimmune conditions are sooooo complicated, you can never know which one you have for sure
I really hope on my appointment on 27th that the rheumy gives me steroids,I have never taken in my life but I really want to try to see if that helps because I have no life whatsoever. In the beginning I was diagnosed with reactive athritis due to staph infection in throat, i guess it developed into lupus or something..
lilian05079 balia9595
Posted
Hi balia9595
I developed strepp throat just after my diagnosis for PMR. Steroids certainly do take the pain away but they don't come without their own side effects which not everyone taking them has. I was started on 15mg and went down to 10mg now I have tapered down to 3mg. I have been on them since last May and back in October when I was on 10mg my rheumy told me to taper 1mg every three weeks it was every four weeks to begin with. As previously mentioned the PMR symptoms have not returned as yet and i feel ok, but once I am off the preds completely my rheumy says it could come back and it may not come back at all so we'll see....i sincerely hope your rheumy gives you some answers when you see him/her..best wishes and let us know the outcome....