please advise

[Svete]

Hello lovely people,

I wonder if I can ask for your opinions about my situation as the doctors seems to be confused.However, it doesn't help as I haven't been feeling well for 9 months so far.

My problem began in March this year, I started to feel generally unwell and symptoms was a sharp pain in my right wrist plus low-grade fever.

then gradually within two weeks, I started to feel pain in my left wrist and both knees.

so I went to a rheumatologist (was referred quickly)after a number of tests which all came back negative I stated on painkillers, felt better but couldn't work for 5 months.

so at following up an appointment with my reuma he ordered for more blood test and MRI for the left knee (it was in worst pain than other joints).

all blood tests were fine again, MRI shows no inflammation ether but some mechanical issue.

I have been back to my GP numerous times and finally, i asked her about the blood test for autoimmune diseases, apparently, I had these done and my ANA test is positive 320 speckled pattern, I have never heard about it from my reuma...(all the other were negative).

so far I still don't have definite diagnose-my symptoms recently have been changed, not much pain around but fever still here up to 37.7 sometimes, most days around 37.3-37.4(which my doctors count as normal) generally feeling very unwell like i have a tropical disease or worst flu ever.

I cant work much: constantly on/off at work, and I 've noticed 2 months ago that I have more neurological symptoms in my wrist: numbness and pain at fingertips, day and nite, weird sensation around nails.

i don't know where to go else; i cant work, live a normal life.

in my opinion, it is a beginning of the autoimmune process but why is not so obvious for the doctors?my reuma has mentioned once Plaquenil if i don't get better...but i see him in 2 months time.

please let me know your opinions,

many thanks in advance

Sveta

[LalSD]

Sveta, our doctor put us on plaqunil to try if it would help begore diognosis. it saved mine and my daughters life. i use castor oil externally for joint pain. i have SLE, so is my daughter. Plaqunil takes about 2 months to start being effective.I would try to see your doctor again and request to start if they think it would help based on your pain level and other related issues. hope you get better.

[favour6]

Hi Svete, sorry to hear you are feeling so well. I agreed with LalSD, n what she said about telling your GP to prescribe Plaqunil to start with. I wish I had someone to tell me this when mine started several years ago when I started running high temperature and with all the tests done, they were inconclusive. I got better from fever and kept with one complaint or the other and carried on with my life with no specific treatment for lupus until my body gave up 2 years ago when it norw has affected several of my organs internally and externally including my kidney. That's when the tests were obvious and I put on correct medication but then the damage has been done and even lost my job.

Try and pursue this, don't take the fact where they tell you they can't find anything, that you are complicated. Obviously, help yourself by keeping active and living healthy health style.

Try some Tumeric for your joint problems. It might help.

Hope these help. Take care.

[Svete in reply to favour6]

thank you for your replies, how sad favour6 that such things have happened to you as well!

it is scary that we have to diagnose ourselves, going to forums, read all possible information about our problems.

I'm sorry to ask if you don't mind to tell what was your initial symptoms when you decided to see your doctor?

I cant image to go on 2 years without a proper treatment for autoimmune disease. you were really strong to survive at all...

I went to London yesterday for a second opinion, I'm afraid I can't leave things away while I'm so unwell and asked my GP for another referral.

the London consultant also checked me well and left puzzled what to do next, as there no painful joints, only slightly ones, more neurological issues, she suggested to see a neurologist, she also ordered more blood test so shall we see the results soon.

be well.

Svete

[milkwoman]

It took me 2 1/2 years to get diagnosed. I thought I was going crazy since every doctor/specialist kept telling me I was "fine" when I knew I was not. I felt like I was 80 years old - lots of joint pain, overwhelming fatigue, muscle soreness, heat/cold intolerance, I was sick all the time, etc.

On a fluke, a hematologist did an ANA test and it came back positive (with no details). When I asked the Heme about it, he said not to worry that it meant nothing. Right. So, I went back to my GP and asked him to repeat the test since it was the ONLY thing so far that gave any indication of what might be wrong with me. He repeated the test and it came back Positive. That was enough to send me to a Rheumatologist who did a full blood workup on me along with a physical examination and urinalysis.

10 days later I got the diagnosis of Lupus and a few months after that, an additional diagnosis of Sjogren's. My ANA from the Rheumatologist was 1:640/speckled pattern, which is indicative of Lupus. I also tested positive for Anti-dsDNA (27 IU/ml, >10 is Positive), SS-A(Ro) AB (>8.0, <1.0 is Negative), C3c (73 mg/dL, (below normal range), C4c (10 mg/dL, below normal range), CH50 (20 U/mL, below normal range), B2 glycoprotein 1 Ab, IgM (12.6 U/mL, above normal range).

I was started on 300 mg Plaquenil (hydroxychloroquine), split dose, 200 mg taken in am; 100 mg taken in late afternoon. It took about 6 months for me to start feeling the benefits of the Plaquenil. I was also diagnosed with Hypothryroidism (has your thyroid been tested?) and the thyroid meds really helped me (and still do) to alleviate my symptoms.

You said you have seen a rheumatologist - did they do a full panel of tests on you? Not everyone tests positive as antibody numbers can fluctuate. Doctors need to go on symptoms as well.

Keep pursuing and testing. You know something is wrong. Just need to find out what. Your positive ANA, though only slightly positive, does indicate disease activity. If you can catch lupus early, the better treatment you will have. Diet, supplements and lifestyle changes can even put you in "remission".

Take care.

[Svete in reply to milkwoman]

Hi, milkwoman,

thank you for sharing your experience, i really appreciate your advices either.

i had had twice tested for all kind of antibodies since it all started in March.

once i had all test in August and then 10 days ago, the results were similar so far.

it is a slightly weird story about ANA results, as i have never been a perfectly healthy person especially after childbirth, i was tested for ANA in 2014 (negative), 2016 (320), 2017 spring(160) and now 320.

i wanted to say that in 2016 i was perfectly healthy to compare with my recent health problems!, i dont know how to interpret such things..

maybe the antibodies have been in my blood for few years and now starting to show up?

the worst thing i have never been told in past years about such positive ANA result...

I was diagnosed with Hashimoto(underactive thyroid) in 2009.

since started on thyroxine my life has changed dramatically. to a better way of course.

I have a feeling if i don't try Plaquenil i don't know if is autoimmune things. i agree to do anything really,

funny enough if i take antibiotics its helps, maybe because this drugs also suppress my immune system who knows..good nite

Svete