I am a 49 year female yet unable to get out of bed or get dressed due to pain and fatigue/exhaustion. I have seen various GPs, Endos, two ENTs, an Eye specialist and a local Rheumatologist but not yet received a definitive diagnosis or successful treatment. I am very concerned that my vision and health has worsened over the last few weeks and that my current (private) Rheumatologist is not helpful at all. He referred to me as an “Interesting case” but unable to provide a diagnosis.
In summary, symptoms include; Blurred vision within last 6 weeks, Pain in and around eyes within last 6 weeks, Dry eyes within last 4 weeks, Jaw ache/pain. Feeling worse when eating, Tinnitus (severe and continuous for last 4 weeks), Pain at back of both ears, Chronic Fatigue - Bed ridden for last 6 weeks (and not left the house accept for hospital visits), Chronic pain in back of head >3 years, Fever at night time, Hotness around front and back of neck and forehead, Breathlessness, Insomnia, Chronic dry clough >3 years, No appetite for last 6 weeks – not able to eat more than a can of soup per day, Rapid Loss of weight >14 lbs possibly a lot more, High pulse rate up to 140 bpm at rest (now reduced on Bisoprolol).
I also have two other autoimmune illnesses; Vitiligo (from 5 years of age) and Hashimoto’s Thyroiditis (from 40 years of age). Over the last 4-6 weeks my remaining skin pigmentation has all but gone. The Rheumatologist said that the anti-body test was negative!
I was originally diagnosed with Giant Cell Arteritis and was initially prescribed 60 mg Prednisolone for 7 days followed by 40mg for 7 further days. I had a Temporal Artery Biopsy however this was negative (not surprising after 2 weeks on Prednisolone!).
The Rheumatologist is now saying it is not Giant Cell Arteritis due to my age and that he would have treated me if I was older!! He is now aggressively reducing the Prednisolone by 10mg every 2 days which I am concerned about. I also had an MRI in December and now awaiting the results. I was taken to the local A&E on two occasions over Christmas with breathing difficulties due to the rapid withdrawal. There were no Rheumatologist’s available so I was sent home even though I had vision problems.
I am now on 20mg Prednisolone only and seriously concerned as I’m still waiting for a referral to another Rheumatologist.
I have been shocked at the lack of awareness in the medical profession through my own personal experience and from those on this forum.
I wish everyone well.