Sarcoidosis with Pulmonary Hypertension anyone??

Question

I am a 34 year old female with this condition & everything that my doctor has tried has failed in getting it under control. Currently I am on oxygen 24/7 and I have a CPAP machine with oxygen at night due to sleep apnea. Unfortunately, I also have seizures, fibromyalgia, rheumatiod arthritis, lupus, depression, panic/anxiety disorder, I also have 4 spots on the front of my brain which my doctor does not know what it is. I know that sarcoids can spread to other organs but doctor says that it generally stays in place?? However, I have been having vision loss in my right eye, my pcp checked my eyes and I could only read one letter on the 2nd line. Can sarcoids be affecting my eyes now. I am scared. My lung doctor has dismissed me as a patient due to the this statement: I don't know if I can help you, more than likely you have had this disease for over 10 years and the other doctors just let it go. So in other words he didn't want to be stuck in the middle. Waiting on disability court date

My apologies for not listing my meds.
Tylox for pain
Demerol for pain
Duragesic patch for pain
Keppra for seizures
Flexiril for Fibromyalgia
Zanaflex for Fibromyalgia
Prednisone for Sarcoidosis & Lupus
Phenegran for nausea
Celexa for Depression
xanax for panic/anxiety disorder
methotrexate for Sarcoidosis & Lupus
CPAP w/oxygen for sleep apnea
oxygen for Sarcoidosis & P. Hypertention
And I am currently on a heart & diabetes diet. And I don't have diabetes (unless they just have told me yet) "sigh"

Carla, thanks for all the websites, they will be helpful & I will email you because I have questions that you may be able to help me with.

Canajoh, my husband & I feel the same way. We are questioning the sarcoids. I have already had a 2nd opinion which came back inconclusive for sarcoids but they still said it was sarcoids. This is my health they are playing with. By the way, my doctor is making arrangements for me to go to the Barnes-Jewish Hospital in St. Louis, MO. but they have been booked up. Sad to say.

Thanks to all for your support.

Answer 1

whoa! reading your question, i can almost feel the pain -- that's tough. all i know is the reason why you're having pulmonary hypertension is because you're having lung problems that's why you're on oxygen and cpap. but the rest? not really in my area of expertise but looks like your problems stems from neuromuscular disorders. and now they found spots in your brain to which your doctor would not do anything? try seeking second opinion -- to tell you the truth, if i were the doctor and you have all of these conditions -- it IS tough and i wouldn't know where to start.

i think they should have tests done to you to see where the root of all problems originates and try to fix that and slowly working outwards to other problem areas as well. the most important thing is to find out where it all originated and treat that. because im guessing the symptoms you're getting right now are side effects of that "root problem"

Answer 2

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Answer 3

I can sympathize with you. After a lung biopsy at Mount Sinai in NYC, the diagnosis was Sarcoidosis. Yes, it can affect any organ, but usually settles in the lungs. I was on oxygen all the time, also Prednisone that has many bad side affects: cataracts, thin skin, bone loss, accelerates aging, and more. A year later I went to Yale Medical to see if maybe I had pulmonary fibrosis. They said no fibrosis, and no Sarcoid either, and that the biopsy slides were insufficiently varied. A year later Mayo Clinic said the same thing, plus that my heart valve condition from rheumatic fever was severe, not mild as my local Cardiologist was telling me for many years. Also pressure on my lungs was high. Both Yale and Mayo said I probably have Bronchiolitis. The same by NY Presbyterian where I went for transplant evaluation. Sarcoid and R. arthritis both are autoimmune diseases, I think Lupus and Fibromyalgia are too. I really can understand your depression and anxiety. Some of your lung problem can be because of your heart. My valve was widened with balloon angiogram, and I have improved noticeably in two years. My point is, have any of your doctors evaluated your heart? An Echocardiogram shows much about its function and valves. You might even want to consider the Mayo Clinic. When I went in July 2004 the cost including test procedures was $7,300 and my insurance paid most for 2nd. second opinion. Plus there is the hotel and car rental. The best hospital for lungs is Denver Jewish. I wish you well. Please keep fighting!

Answer 4

Deeply sorrowfull for your troubles. You did not mention any medications prescribed, are you taking prednisone? The symptoms you describe sound like perhaps your medicines may be working at cross ends, you need to be very clear with your docs about every chemical you ingest. They won't call the cops on you, but if you smoke a doobie to quell your nausea, it will affect the steroids prescribed for lupus. You must approach every Dr. with a complete picture, but then let them put the pieces together. Then go to another Dr, and let him do the same damn thing. They are people too, with varying levels of competency and motivations. This is your life we're discussing, so you should fight for it. Have you sought additional information from the AMA for your prescribed conditions? Have you thouroughly researched all your meds? Last but not least, do not forget the importance of diet. Eating for health is an excellent resource for lupus and sarcoidosis, as it lists the various vitamins that both help and aggravate your various conditions. And that last statement doesn't sound like a dismissal, it sounds like you just need to keep pushing for solutions. No one will try to make your life healthier but you, and like everything else in this big old world, sadly, you have to fight for it.

Answer 5

Hi Patty,
Please contact the AMA and get a referral to a great physician who deals with the multiple conditions you have. I know it's hard for you not having a support system and a physician to speak to regarding all the multiple symptoms you are experiencing.

http://www.healthgrades.com/consumer/index.cfm?fuseaction=homepage&tv_eng=Overture&tv_kw=doctorfinder

http://www.ama-assn.org/

You truly need a wonderful, competent physician that cares about you as a patient. This sources will help you find one. If you still are not satisfied with their referrals, call the County medical society in your town to get a wondeful referral based on your needs.

I would recommend you do the following to try to decrease the sleep apnea effects on your health. Lose weight (if you can) even as little as 5-10 lbs can greatly improve sleep apnea. Try to exercise alittle every day. Even if it means joining the mall walkers and being with others a few hours a day. You need people around you who care and also have health problems that can be a support system for you. Of course, consult your physician before beginning any diet or exercise program!!

For information read these:
http://www.clevelandclinic.org/health/health-info/docs/0600/0622.asp?index=6530
http://www.americanheart.org/presenter.jhtml?identifier=4752

Join a support group at your local hospital (call the Respiratory Department or the Local Red Cross or American Heart Association) they will have lists and people to call to get some support and guidance through your time of need.

You can call any local optomitrist and have an eye exam. When you call tell them your concerns and many do free exam screenings. That can greatly assist you of the concerns you have regarding your eye sight. Make sure to take a list of all your medical conditions and precriptions to allow them to genuinely help you. You should always carry such a list on you, in the event of an emergency. Allergies, medications and disagnosis (date) and amount of medications daily should be included in the list.

I know this hasn't been everything I wish I could do, but I do help it helps you.

Email me if you just want someone to talk to :))

Answer 6

Hi
thank you for your suggestion to try the aloa vera jell, at this point i'll try anything, I also have major depression for which i take prozac, I take oxycodone and tramadol for pain, zanaflex for muscle spasms, I take Remaron for sleep(doesn't work very well) , I also have panic disorder for which i take Ativan. Does the Demerol work well for you? I know someone else who uses it for pain and it seems to work well for him. Thats one of the few pain killers I haven't tried. So far the oxycodone has been the best.

Answer 7

Hi have you been to a PULMONARY HYPERTENSION specialist.
My mother-in-law has PH and is on Flonan check out the PPH foundation website http://www.pphcure.org It has good info

Answer 8

i am so sorry