Re: Waiting.....

[Guest guest]

Thanks this made my night , and smile also Tim in north florida

 

Tim,

I agree with you.  I live in a mountain community with a population of 18,000.  We're only 30 miles above Chico CA where there is about 200,000 people, but even so, the medical care there is basic.  I have to travel to Sacramento-- 120 miles away to see a Rheumatologist that has experience with autoimmune diseases and treatment with BRM's.  No one in Chico will even prescribe them.  Up here, they are great with the heart attacks and strokes- as it is a retirement community turned bedroom community.  So those of us that are not retiree age, and not heart or stroke patients, have to travel to get speciality care.  It sucks.

Even with Sacramento and UC Medical School -- they don't have any specialists for sarcoidosis. The closest is in LA-- 12 hrs away.  So moving to a " city " isn't necessarily the answer. 

What does work is to take the info you find at this site and www.sarcoidosissharma.com and print it out, take it with you to your appt, and make the doc talk it over with you.  You can request that your MD consult with a specialist - sometimes they will do it via the internet.  Your MD can fax or email your medical records (you'd have to contact the specialist to see if they are willing to do a consult this way, first) and that way you may be able to get some guidance in how to treat your sarc. 

Most of the docs are still totally convinced that pred is the only answer.  They also are usually not aware that once they put you on pred, that when they wean you off- it's only a matter of time before the sarc is back, and generally more than a single system involvement. 

So many of us have severe arthritis issues-- and sarcoidosis-induced arthitis is very common.  The crazy part is that your ESR (erythocyte sedimention rate) will be in the normal range.  Your CRP rate may be only slightly elevated, and your ACE will be very high.  These are all blood tests to check the body for systemic inflammation.  NONE are specific for sarcoidosis, and all just say you have inflammation-- somewhere. 

Once you are on prednisone or some other anti-inflammatory, you may get a false low blood count, but take them away, and it's back to square one.  So the docs don't want to start treatment until all the tests are in from all the specialists so that whatever is going on is not masked by drugs. 

So much of the time, the docs want to find another reason that you are having shortness of breath (asthma), exercise intolerance (sedentary life style and obesity), high blood sugar (same as last one), high cholestrol..  you get the picture. 

To tie it all together with the side effects of treatment, the multi-systemic effects of sarcoidosis, (they think it's " only " a lung disease) and the constant fatigue and pain-- and there must be another issue besides sarc..  So we do the " dance. "   And we wait.  

Personally, I like to remind myself of the " neurosarcoidosis " exam.  The neurologist has you close your eyes, touch his finger with your finger, then touch your nose.  We had a theme song long ago, of touch your nose, grab a booger, touch his finger-- second verse-- same as the first..

What can I say, I'm a sarcoidian..

Tracie

NS Co-owner/moderator

To: neurosarcoidosis <neurosarcoidosis >

Sent: Thu, January 21, 2010 5:48:00 PMSubject: Time to vent i guess or do they call It depression??

 

At times you go from one Dr,s appointment to the other and then wait , well lets try this or let me send you over to someone else , sometimes i wished i lived in a big city , and not in a rural area , somedays you just feel like screaming i guess , But you feel like an experiment not knowing whats next , no definite answers on anything i guess the rain here in Florida made me write this tonight , but we keep the faith that somewhere out there theres a break through with this but all keep praying.

-- Crenshaw

-- Crenshaw