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Is my doctor not knowledgeable? How do I find a doctor who knows Sarcoidosis?

Posted , 7 users are following.

karen04762
karen04762

I spent all of last year 2015 with breast cancer. Went through chemo and radiation, and surgeries.  I had over five months of weekly chemo AND prednizone IV drips. With my kind of chemo, I got painful, tingly neuropathy in my fingers, hands, arms, and toes, feet, lower legs. When chemo was done, and I was no longer getting the prednizone IVs each week, the neuropathy started to get a lot worse. I also hurt ALL over...every joint in my body hurt like I had been just hit by a truck. Walking, getting up from a chair or bed, typing, putting on a sock---you name it, I was in pain with it. My oncologist said that I wasn't "supposed" to be having this pain, and said she was not going to subscribe me oxycodone anymore (a medicine which did help a bit.)  I went to my primary care doctor who did set me up with pain meds, thankfully.

Last month, I had sudden, uncharacteristic swelling in my ankles, and difficulty getting a breath, so I went to the hospital E.R. Lung scans showed what they told me was probably metastasis in the lungs. Yikes! I called my oncologist who set me up with a lung specialist who did a lung biopsy. Thankfully--it was not cancer, but it was positive for sarcoidosis. I'd never heard of it. After reading a lot about it, much of my life's symptoms made sense. I had severe "arthritis" in many joints at age 28...weird, huh!  Through my 30s, I had several bouts of come-and-go arthritis in the joints. And now, I can't get a good breath, I have these weird sores on my leg that look like open wounds and they itch off and on.  I have continued periferal neuropathy and severe (like I literally cry!) joint pain all over my body.  

The Lung doc says the leg sores probably aren't sarcoidosis. When I asked why he thinks that, he said because the sarc. sores are sore, not itchy. Hmmm....Everything I've read says they itch, with sarc.

When I brought up the subject of my intense joint pain, he suggested that it's probably unrelated, and probably due to my age (51), and yes, it "can" be due to sarc., but it's very rare, so he doubts that it is. 

I'm sorry, but no. It is NOT normal that I cannot walk more than a few minutes at a time. It is NOT normal that I cannot get out of bed without help, or without yelling out in pain.This level of pain, all over my body--Is Not. Normal. I feel like my lung "specialist" does not know much about treating sarcoidosis.  I have NO clue how to find a doctor in my town, Reno, NV, who will listen to my symptoms and help me find relief.  Yesterday, I put myself on 800mg of Ibuprophen, because in the past, when I had arthritic bouts, my doctor would prescribe me this amount of ibuprohen and it actually helped. So, I thought, why not...upon taking the first dose, I felt some relief from pain. I called my Lung doc and left a msg saying I'm doing this, because the joint pain is so bad, and to call me if I shouldn't for some reason. I have not heard from him. I just feel like getting a doctor to address my issues is impossible!! 

HOW do you find a good doctor in your town that KNOWS about sarcoidosis????? 

0 likes, 13 replies

13 Replies

  • terry39293
    terry39293 karen04762

    Posted

    My, you have had it rough. I had sarcoidosis in my legs but had all the joint pain you described. In the end I couldn't put my feet on the ground. Luckily my doc had an idea that I had sarcoids although he didn't actually tell me till I had exhaustive tests. Big red lumps on the legs. The hospital photographed them as they had not seen them so bad. Certainly sounds like sarc to me. It is rare. I had a heavy dose of stearoids and all the associated pills but it worked brilliantly. I was up and about in days. I don't have chest issues thankfully. I have not relapsed fortunately but it is a cloud over me and can return at any time.

    Ta

    Terry

    • terry39293
      terry39293

      Posted

      Yep. I thought I'd try Borocca. My body didn't like that at all and I returned to normal when I stopped it. I got depressed in the early but came to terms with that. I do consider myself to be luckier than most that I made quite a good recovery. Defiantly slowed me down though. I had oodles of energy. I'm just a normal 55 year old now.
  • tyagi
    tyagi karen04762

    Posted

    Hi Karen. Sorry to hear you are having a tough time. You don't say whether your lung specialist has prescribed steroids. I find that they can knock back some of the symptoms. And you should be fine adding in Ibuprofen if you don't have stomach problems. Not sure what happens in the USA, but with the NHS you can change your GP fairly easily or ask for a second opinion from somebody who knows your condition.
  • magdafloasiu
    magdafloasiu karen04762

    Posted

    Hi Karen,

    I'm really sorry to hear how sick you were/are. I also had cancer (though, it was only thyroid cancer), so I know how difficult it is to deal with such a serious disease. Regarding finding a good specialist, I'm not sure but I think you have over there some organizations that specialize in sarcoidosis (maybe you can find some if you search online for sarcoidosis org or something like this). Contact them and maybe they can direct you towards the best specialists in your area. Also, you may want to check with the National Board of Physicians for a good doctor specializing in this condition. I don't have any other idea, and I'm not sure how your system works over there.

    In case that you can't find a doctor who knows everything about this perfidious disease, at least try to find a good doctor who is willing to do a lot of research. I also wasn't able to find a good specialist in sarcoidosis in my country, but I have two great pneumologists. One of them spends a lot of time researching the best treatments; She's very open-minded and I can call/email her every time my symptoms get worse and she always replies, telling me what to take, how to adjust my doses, etc. I usually see her twice a year for a complete checkup. You may also try to look online for other forums (maybe, US forums) or include formulas like "how to find a good specialist in sarcoidosis" or "how to find a good rheumatolog" in Google.

    I also had weird, red sores on my legs a few years back, but as far as I can remember, they were painful only when I touched them. Also, the condition haven't affected my joints.

    After talking with many other patients suffering from sarcoidosis, I came to the conclusion that finding a specialist in sarcoidosis is impossible because this disease isn't considered individually, as a medical specialty. Therefore, as far as I know, you can only find a rheumatolog or a pneumologist (if the sarcoidosis has affected your lungs) who knows something about this disease, but not a doctor who specializes in it.

    Also, many doctors don't believe patients when they complain about certain symptoms associated with sarcoidosis, such as disabling pain, extreme fatigue, depression, etc. It's very important to find a doctor who believes that you're going through all these.

    One more thing, in addition to ibuprophen, you should also take steroids like prednisone. I also recommend taking calcium and potassium supplements, as prednisone eliminates these two minerals from your body, which may result in osteoporosis and a lot of pain. Please read everything you can about the drugs you take because many doctors won't tell you how to prevent certain things from happening. For the future, you may want to consider taking turmeric which is one of the best anti-inflammatory and anti-cancerous supplements you can get (studies have been shown that, in the long run, it works better than conventional anti-inflammatory drugs; not to mention that it has no negative side effects).

    I'm taking this supplement together with other "drugs" and I can say that I feel much better than before. If you want to find out more about what I'm taking, send me a message and I'll get back to you. I would have written everything, but I don't have time now.

    Wishing you the best,

    Magda

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    • tyagi
      tyagi magdafloasiu

      Posted

      Good advice. Just a word of caution. Many Calcium supplements also contain Vitamin D. Sarcoid flares are often associated with raised levels of this Vitamin. (From Cochrane info)
    • magdafloasiu
      magdafloasiu tyagi

      Posted

      Hi Tyagi,

      Yes, different studies state that high-dose vitamin D may be associated with sarcoidosis flares. However, I've been taking calcium with 1000mg vit D daily (after thyroidectomy, I had problems with vit D, which was always lower than normal) for more than 3 years, and I haven't had any sarcoidosis flare ups. My doctor also told me that problems may appear when patients take like 2,000-3,000mg of vit d daily. Probably, it also depends on each person.

    • camey03589
      camey03589 magdafloasiu

      Posted

      Good advise, minus the calcium supplements, I in fact can't process calcium, so maybe that's and individual issue.
  • karen04762
    karen04762

    Posted

    Thank you for responding! I didn't know about the Vit D association. Thank you for all the advice! 

    No, my lung specialist did not prescribe anything at all, and just wants me to come back in six weeks. He did sign me up for a cardiac MRI, and a PET scan, which I've done, now. And also, he had me go to a lab for a blood work up--testing for rhumatoid arthritis and other things. He said in six weeks, he'll decide from the tests if he's going to treat me with steroids or not.

    My primary care doctor is prescribing me oxycodone for pain, and citralapram for depression that I went through while on chemo.  Other than that, I don't take any other prescription drugs.   I feel like the oxycodone just cuts the pain a little bit. When I took ibuprophen in large dose, I got a deeper sort of relief, if that makes sense. 

    • tyagi
      tyagi karen04762

      Posted

      Oxycodone is a morphine analogue so a straight pain-killer. Ibuprofen also has anti-inflammatory actions, so it makes absolute sense that you experience it differently.
    • magdafloasiu
      magdafloasiu karen04762

      Posted

      Hi Karen,

      now, I don't know what to say...on one hand, it's good that he acts with caution. Since these drugs are all strong and have different negative side effects, it's better to know exactly whether they can provide any benefits or not. On the other hand, waiting six weeks just to get a treatment is a lot, given your condition.

      I've never taken oxycodone, so I know nothing about this drug. But be careful with ibuprofen. According to specialists, iburpofen can:

      - increase your risk of fatal heart attack or stroke, especially if you use it long term or take high doses, or if you have heart disease. Even people without heart disease or risk factors could have a stroke or heart attack while taking this medicine.

      - cause stomach or intestinal bleeding, which can be fatal. These conditions can occur without warning while you are using ibuprofen, especially in older adults.

      As far as I was able to understand about sarcoidosis is that most symptoms are the result of the inflammatory processes this disease causes within the body. While it's necessary to take all these drugs to get rid of pain now, I would advise you to look for other things (natural treatments, diets, etc.) and consume them daily to keep the inflammation within the body at a minimum. As I said before, try to take turmeric and associate it with anti-inflammatory foods for several months and see what happens. I've never ever believed that herbs, diets and natural treatments could help me solve some of my health problems; yet they did, despite the negative comments I sometimes received.

      Also, please always read info about the drugs you take. There are many things doctors forget to tell us. Like the fact that too many x-rays can lead to pumonary fibrosis and thyroid cancer; or the fact that prednisone can cause osteoporosis, and so on. I think that dedicating part of your time to check all these things is important to avoid unnecesary complications and pain later on.  

      Please let us know how it goes with your treatment and everything else. I really hope that you'll find a good doctor.

      Good luck and all the best,

      Magda

  • camey03589
    camey03589 karen04762

    Posted

    I have all of these symptoms as well I was diagnosed in 2011 almost 5 years now. Steroids and pain Meds is all that works
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