Hi everyone, I am new here..
Last year on Oct 29 I woke up with both knees and both hands "arthritic", swollen, red and incredibly painful. Thought it was strange (I have over many years had either sore knees or wrists/fingers.. becoming more often approx 6 months prior to this day), but began my day as usual. Within hours I was unable to walk without excrutiating pain. Not only every joint in my body hurt, but I had incredibly muscle pain.
I went to the Dr's as was so frightened. Prior to this, I had been there due to a strange illness lasting a few weeks (swollen glands, general and severe feeling of being unwell) as well as having a sudden bladder infection (which I never get). I had also suffered intense headaches and migraines daily for 2 weeks.
They took blood tests for RA which came back fairly normal. For the next 2 weeks I did not improve and suffered terribly. I was given very powerful pain relief but nothing helped. They then sent me to hospital to undergo further testing (neurological, I had problems with my eye functioning correctly, as well as numbness down one side of the body for months, and tingling/pins& needles sensations in arms and legs, as well as incredible hot flushes that made me feel like I was burning up inside, and suddenly breaking out in sweats, saturating my clothing or bedding, INCREDIBLE exhaustion that literally stopped me in my tracks after only being up for around 5 hrs - this had started approx 4 or 5 months earlier).
The hospital ran every test possible (suspecting MS) and apart from a few "uncertain" results, an ANA of 1:2560, and some other not-so-important-blood test results being irregular, nothing showed. SLE was negative as were most tests.
An internist came to see me at the hospital and due to my symptoms which also included white fingers & hands at times, swollen, red & painful joints, hair loss (to date I have lost more than half my hair), severe photosensitivity, very dry eyes, diagnosed me with Mixed Cconnective Tissue Disease.
I was put immediately on cortisone 35mg, and voltaren 150mg. Within one day I was finally pain free, however then the problems with my heart started. I was having major heart palpitations, profuse sweating and breathing problems so they had to lower the dose until i was down to 10mg. As the dosage got lower the symptoms started to flare once again.
I was unhappy with this Dr as always left his office feeling confused, so saught a second opinion from a well respected and known Prof. After numerous testing etc, he was unsure why my diagnosis of MCTD was given, as the only positive test results he could see was the ANA (which he retested after I had been on Cotisone consistently for 3 months) which came back at 1:320.
Due to my incredible frustration of still feeling so incredibly unwell (my glands are almost permanently swollen), the exhaustion, hair loss, the pain in my joints and muscles (which btw I have lost, I can barely walk up one flight of stairs - going from super athletic to super-weak), I am about to go to the German Diagnostic Clinic in Frankfurt which is apparently THE place to go when you cannot get a correct diagnosis.
Is there anyone else out there with similar symptoms, yet not showing positive results on blood tests?? i am so frustrated!
My medical history is: severe endometriosis, Polycystic ovaries, early stage cervical cancer, MTHFR (genetic mutation), 3 miscarriages (took 5 IVF's to finally get my miracle son in 2003)..
I have probably left out many things as my memory is also terribly affected now.
THANKYOU for any input, greatly appreciated.
Melissa :worried:
Last year on Oct 29 I woke up with both knees and both hands "arthritic", swollen, red and incredibly painful. Thought it was strange (I have over many years had either sore knees or wrists/fingers.. becoming more often approx 6 months prior to this day), but began my day as usual. Within hours I was unable to walk without excrutiating pain. Not only every joint in my body hurt, but I had incredibly muscle pain.
I went to the Dr's as was so frightened. Prior to this, I had been there due to a strange illness lasting a few weeks (swollen glands, general and severe feeling of being unwell) as well as having a sudden bladder infection (which I never get). I had also suffered intense headaches and migraines daily for 2 weeks.
They took blood tests for RA which came back fairly normal. For the next 2 weeks I did not improve and suffered terribly. I was given very powerful pain relief but nothing helped. They then sent me to hospital to undergo further testing (neurological, I had problems with my eye functioning correctly, as well as numbness down one side of the body for months, and tingling/pins& needles sensations in arms and legs, as well as incredible hot flushes that made me feel like I was burning up inside, and suddenly breaking out in sweats, saturating my clothing or bedding, INCREDIBLE exhaustion that literally stopped me in my tracks after only being up for around 5 hrs - this had started approx 4 or 5 months earlier).
The hospital ran every test possible (suspecting MS) and apart from a few "uncertain" results, an ANA of 1:2560, and some other not-so-important-blood test results being irregular, nothing showed. SLE was negative as were most tests.
An internist came to see me at the hospital and due to my symptoms which also included white fingers & hands at times, swollen, red & painful joints, hair loss (to date I have lost more than half my hair), severe photosensitivity, very dry eyes, diagnosed me with Mixed Cconnective Tissue Disease.
I was put immediately on cortisone 35mg, and voltaren 150mg. Within one day I was finally pain free, however then the problems with my heart started. I was having major heart palpitations, profuse sweating and breathing problems so they had to lower the dose until i was down to 10mg. As the dosage got lower the symptoms started to flare once again.
I was unhappy with this Dr as always left his office feeling confused, so saught a second opinion from a well respected and known Prof. After numerous testing etc, he was unsure why my diagnosis of MCTD was given, as the only positive test results he could see was the ANA (which he retested after I had been on Cotisone consistently for 3 months) which came back at 1:320.
Due to my incredible frustration of still feeling so incredibly unwell (my glands are almost permanently swollen), the exhaustion, hair loss, the pain in my joints and muscles (which btw I have lost, I can barely walk up one flight of stairs - going from super athletic to super-weak), I am about to go to the German Diagnostic Clinic in Frankfurt which is apparently THE place to go when you cannot get a correct diagnosis.
Is there anyone else out there with similar symptoms, yet not showing positive results on blood tests?? i am so frustrated!
My medical history is: severe endometriosis, Polycystic ovaries, early stage cervical cancer, MTHFR (genetic mutation), 3 miscarriages (took 5 IVF's to finally get my miracle son in 2003)..
I have probably left out many things as my memory is also terribly affected now.
THANKYOU for any input, greatly appreciated.
Melissa :worried:
