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please help a new comer

Akhilluvs
1 Recommendation

Hi ,
I am 25 , married and was diagnosed about 2 and a half months back with sarcoidosis, Dont know much about that as being an Indian in India i never heard of it , after came to Ukraine and lived here for 5 years without much trouble with health.
i just wwanted to know, am i going to be over soon?
i had a regular check up and xray(i had 4 Xray shots in a day and i felt bad after it . some heaviness in chest) and i was diagnosed with enlarged lymph nodes in lungs and no doctor could say that i had Sarc. they didn't know what to say and instead sent me to National Tuberculosis and Pulmonary institute in kiev .Again had X-ray shot . And the doctor said i have sarc(the very first phase). i never had any symptoms but now after diagnosis i feel pain in chest but on my left rib cage and mostly if i press there and that too not often. i went to a homeopath and he told me this chest pain is due to gastritis and was on omeprazole for 2 weeks and all became ok.

now again i feel chest pain and heartburn sometimes. i have limited my diet to much extent.

And don't have any other sarc symptoms.

Contacted my Indian doctors and they said not to worry it will go. the main thing is that i don't have to worry and it really works out. when i am alone then only i feel upset and like something is wrong and otherwise i feel great and energetic too.

what is this monster ? is it going to kill me soon?
or there is a change for me to turn back the things as they were?

By the way 1 Doc told me to take Harmones and steroids and the other said not too. the last one told me to take Vitamin E and some relaxing herbal extract.

i am taking the last 2 . is it OK?

Explore topics in this discussion:

Exercise Arthritis Burns Neurosarcoidosis Pain Rheumatoid arthritis Prednisone Heartburn Tuberculosis Sarcoidosis Depression Stress Omeprazole

9 replies

IreneMarie

Hi Akhilluvs, welcome!

I have one link that should help you a little to understand you disease. This is the best site so far to research at your leisure and find so much info from fellow Sarc sufferers that most doctors are not aware of. Use the 'Find It' search window in the red tool bar at the top of this page to enter Keywords to search the Archives for specific topics.

http://en.wikipedia.org/wiki/Sarcoidosis

Good journey and keep us posted :)
I.

AngieT

Hello, Akhilluvs. Welcome to this group. You will find a lot of information here, and a lot of people willing to help. I cannot tell you what all this will do, because I don't know. I was also diagnosed about 2 months ago, and I am still learning quite a bit. Most of what I have learned has been on this website. I wish you luck. Take care.

Angie

alexxsky

Hi wlcome to the group, still new myself ,as every one else i have learned more here in my 2 months with this than from my doctor good luck stay in contiune pray it helps so so much. alexxsky.

carleen

Hi Welcome,

Irenes's link is a good one.
I have had sarc for over thirty years and am still going pretty strong so do not stress.

By any Chance are you from around Goa?
Just curious

Akhilluvs

no i am not from Goa , i am from Jammu and kashmir particularly from Jammu . came to kiev for my aviation degree and got bott Degree and sarc :(

But i will not give up . there is nothing which can stop me and with you all guys i feel even more powerful.

JaynesInPain

Akhilluvs,

You can't know for sure if it is Sarcoidosis without a biopsy. However, there is a percentage of people w/incidental finding of Sarcoid who don't require treatment & it doesn't really affect their health/quality of life. Hopefully you are one of them! I would say enjoy your energy, try not to worry about it. Eat healthy & exercise. Research this disease NOW so that if you do get sick you will be more prepared to handle it. If you find yourself w/new symptoms be sure to tell your doctor just in case you're getting worse.

Farrow

Welcome Akhilluvs! You've managed in a very short time to find this site so you're already ahead of the game! I have had sarc for probably 15 or more years, but I was diagnosed just 5 years ago. I have sarc in my lungs, lymph system, and liver. I have had a scare with possibilities of heart sarc, but thankfully, it was negative. I am currently being evaluated for neurosarcoidosis. It has also affected my kidneys.

You will find that sometimes you have secondary symptoms that are not necessarily sarc, but a complication from the sarc. (Like my kidneys, for instance.)

A good diet and regular exercise are two positive things you can do for yourself. There are many opinions on diet, but there is a good one available if you search this site. It's the Norwegian diet.

I know you will find a lot of support on this site. It won't take long until you feel as if we're family! : ) I'm sorry you live in a part of the world where they are not as familiar with sarc as they are elsewhere. That makes it difficult.

The only POSITIVE way of knowing if you have sarc is with a biopsy, by the way. An x-ray or CT scan or MRI will NOT give positive results. Not even a PET scan will give positive results. A PET scan is good after you've been diagnosed with a biopsy, but is pretty useless, in my opinion, before that. What it does is show "hot spots" in your body where inflammation (i.e. sarc) is hiding. Before a positive biopsy, you wouldn't know if it was sarc, rheumatoid arthritis, or a ton of other things!

Keep in touch and let us all know how you are doing.
Loran : )

Akhilluvs

Thanks and so nice of you all to get your kind replies. This place is a real heaven for sarcies!!!!!

@ Farrow
well i didn't go through biopsy and never felt any thing before it was just a regular medal checkup as in Ukraine TB is considered as epideny so i just went for a checkup.
and because of X-ray they told me of Sarc. its not even in my lungs ... its just that my lymph nodes were a littile big in my lungs......

sometimes i even doubts if the Docs are good enough for me.

i wanted to add that i had heart burns some times before due to this and depression is the one symptom which is visible and came up only after the diagnose.

Is it possible that it might be a misdiagnose or simply i have sarc only psychologically ????

Julie07

Hi Akhilluvs,

Welcome to the group, sorry to hear about your news. My first doctor told me that I had lymphoma and for 1 month, I thought my fate was to die of lymphoma. However, my 2nd Doctor took a biopsy and found that I had Sarcoidosis (Something I had never heard of EVER) I've had Sarcoid for 3 years now. The medication they put me on was Prednisone for about 1 year, don't know if I'm in remission but I'm doing great. Life is good, I go for regular check-ups and tests. Sardoid doesn't scare me as much as it did in the past. Check out this site it was recommended to me.

http://www.webmd.com/lung/arthritis-sarcoidosis

God Bless You
Julie

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Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

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