First Rheumatologist Appointment - Looking for a Diagnosis
My 23 year old daughter has been waiting for almost 6 months (even though her GP asked for an emergency appointment) for her first rheumatology appointment which is this Tuesday.
We were worried that it would be cancelled altogether because of the coronavirus. However, she was called last week and told that the consultant will call her on the phone instead of a face to face appointment.
She is desperate for a diagnosis, with the hope that she can start the correct treatment. She is prepared for the prospect that she may not be cured.
Has anyone got any advice about preparing for the consultation? Should she be asking for specific tests?
She has waited so long for the appointment that she feels that her quality of life really depends on the outcome of a 10 minute telephone conversation.
She is a professional netball coach and a very keen player, so her whole life will be turned upside down if her symptoms get progressively worse due to a lack of the correct diagnosis.
Her symptoms are;
Unable to take a full breath of air without pain (not coronavirus - she's had this for about 6 months)
Sporadic racing heart rate - at rest her heart rate will just jump to 160plus
Excruciating pain in her upper right side (been to A&E 3 times over last 6 months - nothing found)
Extreme Fatigue (she can fall a sleep in a chair as soon as she sits in it - fights to stay awake)
Bone growths on the end and middle joints of fingers 9progressing down to her knuckles now)
Painful crushing feeling in hands
Hot painful wrists
Hot painful knees (very painful to walk up stairs)
Itchy Rash (seems like it is caused by sun - but not sure)
Hair falling out (thinning - rather than bald patches)
Sporadic ringing in her ear
Coiled rash (just once about 18 months ago)
The above symptoms gradually started when she left university 2/3 years ago
Always been a well child.
Vegetarian (since the age of 7) - recently diagnosed B12 deficient and vitamin D insufficient (just start supplementing).
Her Dad's Thyroid stopped working in his early 20s (don't know why - he takes levothyroxine). Also in his twenties he had a blood clot in his portal vein (which was stented) and a few years later he had multiple Pulmonary Embolisms (reason for clotting not known). He has arthritis in his big toe, which he has just had a cheilectomy done - he hasn't had any other arthritis diagnosed.
Her grandad has coeliac decease, which he was diagnosed for 2 years ago (spent months in hospital very poorly - but now recovering with a gluten free diet). He also has gout.
Any advice would be very much appreciated - do you think it is worth my daughter mentioning the family history?
Does anyone know if the consultant will look for any underlying causes other than arthritis that may be causing the above? We are hoping that they will find she has something that can be treated and that the above symptoms disappear! Or will the consultant just medicate her for arthritis?
We are totally new and green to this - and my daughter's biggest concern and worry is that this is just going to get worse 🙁, as her symptoms are definitely becoming more painful and severe.
Sorry for the long post.
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