Re: Seeking Guidance when dealing with multiple doctors and Nobody seems to have Ans

[Guest guest]

It's hard to get the docs to coordinate care, they always seem to be so

busy, I always ask them to send reports to each other, but when you go

in, they haven't even read the other report. I try to keep it to as

few docs as possible but then again I am not as sick as your husband,

so that is hard to do. One thing I know that really improved my lungs

is Plaquanil, and it was prescribed for a whole body rash from the

sarc. but took care of the lungs too.. just a thought. I am sorry he

is going through so much, I will keep you both in my prayers.

Marla

Originally posted message below but didn't get any responses. I looking for some guidance as to the best route to take when dealing with multiple doctors. My husband's primary doctor is a pulmonologist but we frequently visit the neurologist and endocrinologist. His lab work always seems good but his physical being is not so good. His doctor has increased his dosage of lasix but the legs are still swollen. I am going to call his eye doctor as his eye is red and swollen. His vision is already poor. Symptoms seem to continue coming up, but none of the doctors seem to be able to tell us what to expect. Looking for answers to what to expect next. My husband was diagnosed

with sarcoidosis in 1990 when a tumor was removed from salivary gland.

He had no symptoms until in 1998 he developed hydrocephalus (water on

the brain) which led to shunt being inserted and discovering sarcoid

lesions in the bain. Since this time, he has various neurological

issues -- leg tremors, unsteady gait, hands shake, confusion, muscle

and joint weakness, etc. He also has developed severe sleep apnea,

bradycardia (resulted in pacemaker implant) bilateral hearing loss,

vision impairment due to keratoconus, diabetes, hypertension and poor

performing pituitary gland (male hormone replacement and thyroid

medication). Fell and developed a blood clot in leg but doctors are

reluctant to treat with thinner due to medical risks. Recently legs

and feet were severely swollen so doctor prescribed water pills and

increased airflow volume on CPAC. Also on nebulizer 5 times a day

using Albuterol and Pulmocort. Legs continue to swell are extremely

hard and red. Hate going to the doctor because it only seems that

another medication gets prescribed on top of long list already being

taken. Wanted to discuss with doctors possibility of decreasing some

of the meds. Have any of you experienced these symptoms and what

actions have you taken?

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