More and more testing :-(

[dwsurquhart]

Just got the results from my neurology appointment.

ECG of heart is normal. This is a good thing. Most of the 16 vial blood work came back as normal, slight variations in the carnitines and severly low vitamin D. White cell count quite low and lymphocyte count quite low. I am only on Tocilizumab. All the autoimmune tests came back as negative. So I guess now will be a viral specialist. Still not sure after 3 years why I lost 52# of muscles mass in 7 weeks and all the cartilage in my knees has mostly dissolved.

In my frustration I baked a lot of short bread cookies, decorated them and took them to the wonderful ladies who work at my hospital lab. I have gotten to know them quite well over the last 3 years as I am there every 3 weeks. This actually made me feel quite a bit better and more cheerful by doing something nice for the people who are trying to help me.

Easiest way to get a quick appointment with a specialist, take some nice homemade cookies or coffee to the specialsts nurse or receptionist (whoever does the patient booking). They usually get yelled at by frustrated patients and are very rarely thanked for making the appointments for people.

This year the lab staff, Rheumatologist and staff, GP and staff all got cookies from me.

Merry Christmas everyone and here is to hoping and wishing for an actual diagnosis and treatment plan. I am tired of the "I don't know, you are kind of a puzzle, maybe this other specialist might know, try this drug it may work.

Good night everyone.

Scott

[oldtimer]

I assume you are doing something about the low Vitamin D? That seems to be the only really abnormal finding so far. Quite a puzzle for everyone - especially for you!

[dwsurquhart in reply to oldtimer]

Thank you oldtimer and merry Christmas. Yes, i have started to take 2000iu of vit D daily now. Will have blood checked again mid January to see if vit D is actually working. I have noticed already that i seem to be processing food better since starting the vitamin, so that is good.

Scott

[Ruth12345]

Very kind to make things for people. I gave bought biscuits for the receptionists at our gp a couple of months ago as I was there so much this year. Been with that practice for 30 years and its only this year they know my name without asking .... shows im there too much. So felt the same as you as when there are problems the receptionists are the ones trying to sort it out. Difficult for them and so frustrating for us. Must be waring for you. Hope you feel you have had a lovely festive couple of days.

[dwsurquhart]

Thank you for the wonderful reply Ruth. I hope you have a wonderful holiday time as well.

Scott