Going through the diagnosis process, 17 and scared

Chest and lungs
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I am currently going through the diagnosis process but I have been going back and fourth to the doctors and the hospitals for around 3 years now and they are basically telling me they can't do anything else for me. So I visited a herbalist, who does acupuncture and he has diagnosed me with sarcoidosis, and is currently giving me a treatment originally from Chinese medicine. I am unsure as to how this will go but I am a bit reluctant to go on any steroids as I know they can have serious long term side affects and with me only being 17 I would have to be on them for a really long time.

My symptoms include breathlessness, a lot of joint pain, heart palpitations, swollen joints, headaches, abdominal pain, vein aches and I also have asthma, and I have a iron deficiency, and also I have a calcium build up behind my eyes which gives me poor eyesight more so in my right eye. I also have Reynolds phenomenon and I suffer from social anxiety. Right now, I am feeling like no one is taking any of my symptoms seriously, be it doctors or family members, I am just feeling alone and I don't know what to do.

I would appreciate any advice or kind words from anyone with any recommendations from living with sarcoidosis or living with some one you know who has sarcoidosis.

Warm Wishes,

Romy

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Good Lord, Romy - You got a really bad deal at an early age! Presently, I have Sarcoid in my liver and spleen. Mostly it compounds my tendency towards depression and makes me sluggish. About 1 1/2 years ago I had a blood infusion, which helped considerably by reducing the amount of calcium in my blood. Have you tried that?

I feel ya, Kid - John

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Thank you for replying! I really appreciate it! How long have you been diagnosed for? And are you on any medication? No I haven't actually tried that, I might consider that. I do also feel quite sluggish at times, and often quite exhausted! My only issue is as soon as I told any of the doctors I didn't want any steroids or strong pain killers - mainly because I have a bad stomach as it is - they just told me they couldn't help me! So that wasn't exactly reassuring!

Thanks again for responding

Romy

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Hi Romy - I take Prozac and Lamictal for depression. Nothing specifically for Sarcoid. I think you've made the right decision about not taking Steroids. Steroids, in my mind, might reduce Sarcoid symptoms a little, but they introduce a host of new problems that'd just make matters worse. 

It amazes me that your doctors told you they couldn't help! It's a doctor's duty to help, especially with challenging conditions. If I were you, I'd tell them the same. Keep researching new studies and treatments. Keep on those doctors' case. See them as often as your health plan allows. Demand a referral fo a doctor who actually tries.

Of course you shouldn't have to do any of that, but when someone slacks off on his duties, others have to step in.

Stick it to the man, Romy - John

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Hi John! Yes I agree! I don't really need anymore problems!

I was just as shocked, but I have been to around five or six different doctors already, and it's frustrating to me because I feel as though they are never straight with me, it's as though they don't want to tell me what they're thinking in case it hurts my feelings! It's ridiculous! Just because I am only 17, it doesn't mean I don't want a clear and honest diagnosis!! They all just kept on referring my to different parts of the hospital and different specialists and I think I have had every scan, test or xray known to man at this rate! So that is why I eventually decided to visit a herbalist who my family has been to for the past 20 years or so with various things. Like I said previously, I don't know what to think about "natural medicine" so t speak, but I'll try just about anything!

I am enjoying reading your comments John! 

Romy 

 

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Hi Romy,

what can I say? it's terrible... I started at 27, and it took 10 years to get the right diagnosis. Most doctors know nothing about sarcoidosis, so they think that we exaggerate the symptoms. Anyways, from my own experience, I can tell you that accupuncture doesn't really help. I tried that too, and the only thing the specialist was able to do was to "strenghten" my lungs a little bit (he told me in advance that he can't really help me). Regarding the chinese herbs, I don't know what to say, as I didn't try them. However, pay attention that many people will give you all sorts of things only to get your money. Many will try to take advantage of a desperate person.

A while ago, I've visited a herbalist who was also a homeopath. He didn't even know what sarcoidosis was and he gave me a lot ot things to take. I explained everything I knew about sarcoidosis (and I know a lot of things). Anyways, he was telling me: "so, it's cancer". And I was telling him: "No, it's not cancer." And explained everything once again only to hear him saying: "So, it's cancer." I gave up and never took the things he told me to take. If he didn't know a thing about sarcoidosis - he didn't even understand what I was telling him - how could he give me the right treatment?

However, I tried homeopathy in other occasions and it helped me a lot. You can read about homeopathy online - regardless of what others say, it is effective. Even allopathic doctors admit it (there are clinical studies that attest its efficacity).

Recently, I've found an indian doctor who practices homeopathy. He wrote a book about lung sarcoidosis (it is very well documented), which means that he understands the disease and can really help a person suffering from this condition. I contacted the doctor and he is very serious. I am yet to submit a form with answers to his questions and get a treatment. PM me if you want to find out more.

And yes, the doctors who told you that they cannot really help you were right: they can't. The only thing you can do is to have regular checkups and try to find an alternative (maybe, alternative medicine) that works for you. Anyways, keep your eyes open and check everything someone, be it a doctor or herbalist, gives you. Some herbs can do more bad than good. I'm also against steroids and other drugs, but sometimes they can help you bring your body on the right track.

Last year, sarcoidosis became active again (after two years of inactivity). I decided to give prednisone a shot, and I felt better. However, the main problem with this drug is that it can have terrible long-term effects when taken for a long time.

Take care,

Magda

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Hi Magda,

It is unfortunate that acupuncture didn't help you, although it was myself that had never heard of sarcoidosis before I visited my acupuncturist, and he diagnosed me. He also, like the indian doctor you found, knows quite a lot about sarcoidosis, and he is always very reasurring when it comes to any questions I have or if what he is doing or giving me is going to work. I will keep an eye out for any one trying to make money out of me and nothing more, but for the meantime I really feel as though he is trying to help me and understand this disease more. I have also spoken to other people who suffer with sarcoidosis who have said it has really helpled them, I think that is why doctors really don't understand it, because it can be so diverse and affect everyone differently.

I am currently taking a homeopathic remedy called "Boswellia", but I haven't been on it long enough to tell you if it has really made a difference yet. 

I am very sorry to hear that you had to go to steroids to feel better, and that it was active again. But yes, that is why I haven't gone on any steroids, maybe I will when I'm a lot older, but now like you said I would much rather try and find some alternative medicine. 

Thanks for replying! 

Warm Wishes,

Romy

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Hi Romy,

I'm really happy that you've found someone to help you out and that your acupuncturist knows a lot of things about this disease - I didn't know that he actually helped many people. It's not only about the fact that sarcoidosis affects people differently; it's also about how a specialist understands this disease along with its triggers. It's truly complex and while an acupuncturist (homeopath) may see a sarocoidosis patient as a lost cause, another one knows exactly what to do to help that patient.

I heard about boswellia, but as a herb. You've made me curious and now I have to check it out . 

Just drop me a message whenever you feel like. Till then, all the best!

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Hi Romy/Magda,

Nice Healthy discussions. This is Nitin Jain, male 30 indian. I too need your support on this. My mother unfotunately was identified with Sarcoidosis few days back. Our doctor asked for ACE level and the result was 128 which is much high than normal level. He did asked for Mx (Mantoux) test which was negative. He did not asked for any other tests. I am not sure how to take this forward. Do we need any other tests? He suggested listed 4 medicines ( Aciloc RD, HQCS 200, Doxovent 400, Multivite Omega 3 capsules). Doc suggested that medications could go for 1 month or  may 6 months or a year even. Please suggest should we go with our doctor ? Also, Madga, please suggest me with homoepath medicine too. Please let me know if you need any other information. My mother health is decreasing slowly. I am extremely worried. Please help me.

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Hi Nitin Jain,

I'm really sorry to hear about your mother. I'm not sure about the MX test, as I've never done that. Also, I didn't take any of the medicines listed above. Maybe you have different medicines, with the same effect. In most cases, the anti-inflammatory drugs given to control sarcoidosis must be taken for a long time (months or years). It depends on if and how well the patient responds to the treatment. Sometimes, the medicine has no effect, so it's quite useless. Other times, it's effective, reducing the symptoms associated with this condition. It all depends from one person to another.

I've also sent you a private message with details about the homeopath.

I hope your mother will be ok. All the best...

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I am sorry to hear this! Stay positive. 

I am now 24 years old and I was first diagnosed with sarcoidosis at the age of 12. I had it in the skin, where it would get red with lines and it looked very odd. I would never wear shorts and stuff because I was shy to show my legs. Finally it went away. During highschool my eyes started having problems. I had glasses in general, but I would go in for eye checks. One day they checked the back of my eye and found out that I had needed to get the back of my eyes checked. My eyes use to get very red and would be in pain. I was sent to an eye specialist, and from there (till this day) I was sent to a retina specialist. They found out that I had inflammation in the front, middle and back of my eye...also known as uveitis (and another name). This causes floaters, sensitivity to light, severe eye pain, redness and could cause blindness if not treated. (Apparently, there isn't any cure, but there is a way to keep it controlled). Finally, my specialist put two and two together and figured that the sarcoid is in my eyes. Therefore, I have been on eye drops, prednisone and methotrexate (on and off) for years. I am terrified of what the future holds. I do not want to lose my sight, so of course I am taking these meds, but these meds have severe side effects. I've had weight gain, and loss, acne and much more. 

Your not alone.