New Member needs Advice

[Guest guest]

Hello,

I was recently diagnosed with Sarcoidosis and could use some advice on how to

determine I am getting the correct treatment. My recent history included a

severe bout with the flu in November followed by vague symptoms of not feeling

well, muscle aches and cramping, waking up feeling like I'm suffocating, then

achilles tendon stiffness, burning sensation in my feet/ankles which then

developed into a hugely swollen right ankle, followed by the left and then

aching elbows and erythma nodosum lesions on my arms...which is what led to my

diagnosis via a chest Xray. My long term history (12+ years) includes elevated

liver enzymes (currently slightly elevated again), kidney stones, rash-type

reaction to the sun, a blocked salivary gland, severe headaches (enough to make

me go to the After Hours clinic, which they diagnosed...after a negative CT

Scan...as Hypertension) with neck pain, blurry vision, change in sleep habits,

chest (including occasional fluttering feeling) and right upper quadrant pain.

All of this was spread out over the years,and came and went, so honestly I just

accepted the aches and pains as part of getting older until the last month or

so.

I can not fault my doctor, in that they reached a diagnosis in something under 2

weeks. However, I was sent home with a 6 day course of prednisone, which almost

immediately cleared up the joint pain and shortness of breath, literally making

me feel 20 years younger...until I was off it for about 3-4 days. : (

My problem and concern is that they have left me somewhat adrift. When I called

to indicated that my ankles and feet were starting to hurt and swell again, I

was told they were able to get an appointment with a Rheumatologist for later

next month. At this point I am on no medications...well, except for Friday

night, when I took a 8mgs of prednisone that was prescribed for my husband

because I had been practically bedridden for the two prior days. Again, the

prednisone was like a miracle. Yesterday I felt very good, today I am starting

to feel the chest and joint pain coming back. I know that I can not last until

next month for someone to develop a treatment plan for me. I do have an

appointment on Tuesday for a " routine physical " with my regular doctor and I

have made a 3 page summary of what I have learned so far about my

condition..including links to the ACCESS study, helpful resource sites, dietary

information from the Life Extension site and a list of doctors. I am somewhat

disappointed that I needed to do this...in my mind I feel it is the doctor that

should be giving me this information.

So Tuesday, besides discussing my current issues (chest pain, shortness of

breath, weight loss and joint pain), I am also going to insist that she do a

consult with one of the Sarc specialists on my list and develop a treatment

plan, or get me in immediately with a doctor that has at least had some

experience treating the disease.

Between being treated for gout and cellulitis, my Office Visits alone for the

past two weeks have been upwards of $500 and I have yet to see the bill for all

of the tests, ultrasound and Xray. I'm bracing myself for the " sticker shock " to

come!

Am I over-reacting or expecting too much from a General Practitioner? My

referral is to a Rheumatologist, I suppose because of my joint involvement, but

should I be seeing a Pulmonary specialist instead? How do I ensure that the

" specialist " I'm sent to is actually able to monitor and treat my condition?

What tests should I expect to be run? Has anyone had any success dealing with

this disease with dietary changes and supplements? How concerned should I be

about this, given the numerous symptoms I've had over the years?

Thanks for any advice you can give...and for giving me the opportunity to vent a

little. : )

Deb Z.

Michigan