Beginning Diagnosis, Long time Symptom suffer
Posted , 9 users are following.
Hello,
I have been going through symptom after symptom for the past 5 years, not realizing they are all related. Only a couple of months ago did my ENT put it on paper. Swollen lymph glands are what brought me to the ENT, a needle biopsy was done (5 years ago) nothing, had another needle biopsy very recently, nothing but the gland has grown from a dime to a half dollar, meanwhile progressive symptoms...face swelling, loss of taste, loss of smell, fatigue, rashes, swollen eyelids, vision blurry. Shortness of breath (but I am asthmatic too, so I attributed that to my Asthma. Now they suggest a Parotidectomy to remove the lymph node and do a biopsy on it to see what it contains. Should I have this done, ENT said it could still come back negative... I have had a CT Scan w and w/o contrast no chest Xrays. ENT ran a basic autoimmune panel (nothing twice).I have also been referred to a rheumatologist as well. I am confused and frustrated, I would appreciate any feedback that can assist helping me navigate. Thank You.
0 likes, 20 replies
zss LeShawn
Posted
LeShawn, you are the only other person I know (beside myself) that has asthma and sarcoidosis.
There is no information anywhere I can see, that caters for sufferers of both conditions. I have looked on both sarcoid and asthma sites and have come up with nothing.
Have you had any luck?
LeShawn zss
Posted
zss LeShawn
Posted
If there is no general practitioner that is familiar with sarcoidosis that is near you, then the only option is to find one that you can trust and you are confident of their ability.
Explain your complex condition and that you want them to be your treating doctor to manage your health and become familiar with sarcoid. They should also be your single point of contact for specialists you will require. This way, correspondence is all in one place.
Do you have many practices around to choose from?
LeShawn zss
Posted
My ENT referred me to a Rheumatologist, but as of this month, she won't have any open appointments until Jan/Feb 2017
! I have even put feelers out in the forum for my area. My ENT is "aight" but he seems, kinda indifferent. He is doing my biopsy because it's his field...pass that I don't know.
zss LeShawn
Posted
Hello LeShawn, I see your dilema. Our terminology is differant. A General Practitioner or GP as we call them in Australia, is our first point of contact other than an emergency department in a hospital.
He or in my case, she, is my "local doctor" and primary medical carer. All visits requiring a specialist is referred first by my GP.
I have had the same GP for 12 years in the same practice. Trust and familiarity is everything.
There are plenty of GP's and their practices to choose from where I live. Fortunately I didn't have to find another GP.
Are you not able to find a surgery or practice with doctors more able to take more of an interest in your requirements?