| Pat |
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Reply with quote | #1 |
Hello everyone! I was diagnosed with Sarcoidosis this spring after months of getting tireder and tired and tireder. My primary doctor did some blood tests and routine check up. I suggested we do a chest xray since I'm a smoker and my husband passed away from cancer 6 months after a physical which DID NOT INCLUDE A CHEST XRay (HMO said it wasn't necessary) He showed me the xray and pointed to a line which I said had been diagnosed a few years ago as a fractured rib following a fall but then I saw a couple of circular spots I had never seen before so he sent it to the radiologist. Radiologist sent back a note to check it again in 3 months. Needless to say, I didn't want to wait so he sent me for an enhanced CT Scan. A day later I was in his office and he said I had Metastic Cancer in my lung to which I said if it's Matastic that means it came from somewhere so lets go find it. To make a long story short, a month later and enough radioactive tests to light the city, followed with a needle biopsy I was diagnosed with Sarcoidosis. I was put on Prednisone (made me feel great for a while). They did the step down thereapy. 2 weeks later I broke out in a rash on my legs which turned into welts, then my arms, my chest, and my back. I was then told to not use Prednisone (which is fine/don't like the long term ramifications anyway) and use Ibuprofen for any "flares". I worked from June till the end of September when I started getting horrendous back aches and headaches. A massage therapist got rid of the back ache but the headaches were crippling. I had lost my insurance so kept taking Excedrin and aspirin and then Ibuprofen and finally my specialist (who I told I couldn't pay to see) referred me to an Insurance from the state. I now have it on my brain; I now can either sleep or not sleep....no happy medium...and it will be the 4th of Dec before I can get the test to tell the scope of the new "invasion". The new doc said keep taking the Ibuprofen. It does help. Anyone have any of the same stuff (I/ve
just given you the "highlights) Please email me at pat@pjeller.com.
Thanks. I need advice and information and facts. Does having it in your brain mean I can potentially loose my mind?
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| Laronda |
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Reply with quote | #2 |
Hi Pat,
I'm very sorry to hear about your husband...but I'm very surprise that your doctor did not do a chest xray every year since you are a smoker. When it come to our health we can not let the insurance company tell us what test are need or not...you know you body, you have to be proactive.
I know from experience...that if you sleep on a memory form mattress instead of springs mattress, some of you pain will go away.
As for your medicine.. get your doctor to write the prescriptions out and email or mail the Pharmaceutical company out your situation and they will help you with the cost.
I hope that your appointment on Dec 4 turned out okay...
Laronda
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| Pat |
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Reply with quote | #3 |
Thanks Laronda. Will get the results from the tests Friday and go from there. I may have found what triggered the Sarcoidosis but I can't post about it yet. You can bet that once I'm able to tell the rest of my story I will! All I can say is that I am staying with friends right now and feeling a lot better........Hopefully I will be able to get some work done from now thru the 23rd of this month! (How novel to feel good enough to even entertain such a thought)
Thanks for your input. What led to your diagnosis? Did you have extreme fatigue? Where was your main pain? How long since you were diagnosed?
Pat
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| jae | |
| Pat |
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Reply with quote | #5 |
Thanks for the link! I continue to improve. I have been out of my apartment since December 2nd. The "situation" I referred to was found in my apartment;Mold. I ran a test, it came back with 3 different "uncommon" molds and the doctor ordered that I leave the apartment immediately. I am now waiting on the complex's "official" mold test results which they had done
10 days ago; the results of "their" test should be interesting. My fatigue has dimenished expotentially, my headaches have diminished as well even though I have been diagnosed with new findings of spots in the "white matter" of my brain. I have blood in my urine and am in the process of having a cystoscopy being performed on the 26th of this month. I am hoping that the blood is just a temporary after effect from the ibuprophen that I had to take to eleviate the horrendous headaches. I will keep you posted. Thanks again for the link.
Please fill me in on your situation.
Pat
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| Pat |
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Reply with quote | #6 |
Hi Everyone! Update: I was admitted thru E.R. to the hospital the end of February and woke up 2 weeks later. I was on a ventilator and my family was told I only had a 30% chance of making it. They did a huge lung biopsy, testing and retested for T.B. which cam e back negative........they knew I was diagnosed with Sarcoidosis. They NEVER DID FIGURE OUT WHAT CAUSED MY COLLAPSE! I was severely DEHYDRATED! To all of you out there, be very very vigilant about your water intake!
Good news, after 2 1/2 months in the hospital and a couple of months recuperating at my daughter's home, I'm back on my feet and trying to put my life back together.
Interesting note: I started getting neck pain and headaches about a week ago and after a prescription of antibiotic it went away (neck pain and headaches is how this all started in a mold ridden apartment) I AM CONVINCED that Mold was the catalyst. Anyone who has had a similar experience (Mold & Sarcoidosis) please let me know.
Thank you God!
Now everyone go drink a big glass of H2O.
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