Hello. I'm new here.
I'm am currently under the observation of a rheumatologist, immunologist and awaiting a referal to neurology.
But would appreciate any insight into a possible diagnosis. I feel like I'm going mad!
So, where to start...
Recently (12 weeks ago) I had a baby. Towards the end of my pregnancy I became very unwell. Symptoms included flushing of my face neck and chest which developed into a thick purple rash, headaches,flashing sparkly lights, tightness in my chest and throat and breathlessness, flushed shoulder with red tracking down my left arm, "lymph nodes" in my left armpit left side of chest and left breast, nocturnal diarrhoea and loose stools.
I had an ultra sound that ruled out pulmonary embolism, blood pressure fine ruled out preeclampsia, no sign of stroke or heart attack.
Post partum the rash and breathlessness cleared up. But 2 days after giving birth, my right foot big toe joint swelled up. Blood tests showed raised uric acid and I was diagnosed with gout.
Around the same time I started getting joint pain in my hands and wrists, worse first thing on waking, then would dissappear by midday.
Sent to immunologist who ran blood tests and I did a 24hr urine collection for carcinoid cells. This was negative. Lupus bloods negative but had raised ESR and raised IGA ( I don't have coeliacs) which she said combined with normal liver function can suggest mucosal inflammation or infection or can beassociated with certain rheumatoid conditions.
Since then, the joint pain is constant and agony. On most days it's about a 7. And is now in my wrists, hands, knees. I have raynauds in my right foot which has led to chilblains on my toes.
My left arm keeps swelling up, and at times is around 4cm larger than my right.
I had breast exam which was all fine and the consultant said I appear to have severe muscle pain.
I now have bad upper body muscle pain and weakness, numbness and tingling in my arms and hands. And leg muscles if I squat or kneel. At times the my upper body feels like it's tremor-ing if I stretch my arms out infront of me to pick something up. I also am experiencing reduced fine motor movement in my fingers.
I also have increasingly poor night vision and blurred vision if going from a dimly lit room to a bright room.
In addition tot his I have an underactive thyroid (I take 75mcg levothyroxine daily) with high TPO antibodies and suspected hashimotos. My levels have always been stable. I have sporadic boughts of severe coccyx pain which has been ongoing since 2010 with no known cause, and prepregnancy was temporarily "cured" with amatriptylin.
I have family history of SLE, RA, idiopathic fine motor neuropathy, and thyroid conditions.
Any suggestions as to what is going on would be greatly recieved. Any ideas where else I should post this?
Many thanks x