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Hi I’ve just recently been diagnosed with sarcoidosis and I’m scared

Posted , 7 users are following.

Missymaya
Missymaya

I had a rash on and off for few years but got intense in summer then I had biopsy which confirmed sarcoidosis,

ive had blood tests done which showed I had sarcoidosis 

and chest X-ray which I’m waiting to speak to dr about although they said few days ago there’s something on my lungs so very likely I have it in my lungs

have to get my eyes checked aswell as since summer last year I can’t bear to look at light my eyes hurt and water I’m constantly squinting and avoiding light 

I’m wirrying a bit just joined this site I hope someone gets back to me

thank u

maya ?

0 likes, 10 replies

10 Replies

  • david03145
    david03145 Missymaya

    Posted

    Hi Maya, don't be frightened... be positive you have a diagnosis and you can plan with your doctors when all investigations are completed. Your symptoms sound a bit like mine in some ways and l lead a normal life with some limitations. My balance is the most limiting factor. So be positive. It can be limiting and life changing but those that have it usually pull through with a will and a way.

    Good luck

    Kind regards

    David

    • Missymaya
      Missymaya david03145

      Posted

      Thank you for your message, yes I know I’m being a wimp, I’m seeing dr soon and waiting to get eyes checked out, do you have same problem with your eyes? 

      Thanks for messaging me made me feel bit better

      kind regards 

      Maya

  • sue51195
    sue51195 Missymaya

    Posted

    Hello Maya

    sorry to hear your news. But hang in there and keep positive. 

    Ive recently been diagnosed too and yes have also found it very scary.  For me it has been a nagging cough for two years. Numerous tests and ct scan confirmed in both lungs.  I am now having a bronchoscopy and biopsy done the end of this week with a tb test.  

    I find the cough hard to deal with but about six months ago before diagnosis I joined the gym and decided I was going to help myself get fit to fight whatever lay ahead. 

    At first I really really struggled but gradually I have built my exercise routine getting stronger. But it has not been easy. I feel that is is helping me mentally as well to deal with it, not going to give in....

    Keep strong. Take care and all the best

    Sue

     

    • david03145
      david03145 sue51195

      Posted

      Hi Sue... l have seen quite a few Doctors since diagnosis of Sarcoidosis in my lungs. I have an inhaler called fosthair that has been effective for me.

      Get well soon

      Kind regards

      David

  • pearlie59190
    pearlie59190 Missymaya

    Posted

    Hi Missymaya,

    Welcome to a sight where there is information and help.

    I was diagnosed about 11 years ago. And it is still much information yet to learn about it. The way i look at it is that we the sufferers of it will undoubtedly be the ones to find the true cure for it. Especially since doctors are so limited in their knowledge of it.

    The first thing I'd like to say is do not fear it because when you fear something you unknowingly give power to that very thing which you fear, thus allowing yourself to be controlled by it. So start saying to yourself loudly that you do not fear this thing which has come upon you but that you will start the journey of learning what it is and how to eliminate it out of your life.

    Secondly start to take a serious look at your diet and approach it from a nutritional level which i believe is a very good place to start.

    You can either eliminate or decrease the symptoms by changing your diet. And get ready for that journey because there may be some things that you enjoy that you may have to either slow down in eating or altogether just give up.

    I truly believe that most diseases begin with nutritional deficiencies of vitamins, minerals, amino acids, and much more.

    Environmental past & present conditions may also be a part of this

    Condition. Anyway i have a list of foods that may assist in addressing any nutritional deficiencies you may have.

    After i changed a few things with my diet, i begin to have less and less symptoms from the sarcoid and my remission periods from it would last very long times wheras i would go for as long as a year or longer without having any symptoms at all.

    I will look for the list and get this information to you as soon as i find it. But i will say that 2 of the number one enemies to sarc is

    sugar & white flour. You will have to seriously cut back on them as much as you can of course gradually to be realistic about it. Some things just take time to let go of all at once. Just like a bad relationship, you will eventually have to let go of it unless you find the cure of how to change it to the benefit of all involved.

    Pray for knowledge, understanding, & healing. And these things will certainly find their way to you!

    Pearlie Snm. Good Luck!

    • Missymaya
      Missymaya pearlie59190

      Posted

      Hi thank you so much for your message it helped me so much and thank u I would appreciate that list thank you, 

      I’ll try and cut back on sugar white flour won’t be a problem but do sugar slowly 

      I got to stop worrying I know and just deal with things more positively and changing my diet is a good start,

      Thank u

      Look forward to hearing from you again 

      Kind regards 

      Maya

    • pearlie59190
      pearlie59190 Missymaya

      Posted

      Hi Missmaya,

      I was unable to find that list of foods so I'm just gonna go a little off my memory here...

      Increase your intake of fruits and vegetables. Even though most fruits contain sugar, the sugar in the fruits are more healthier for you aids in better digestion as well.

      Pineapples are great in helping to reduce inflammation in the body. Apples red & green, oranges for your natural vitamin is a plus. Papaya is very good for the digestive tract as well as other benefits. Load up on your berries as often as possible. Strawberries, blue berries, black berries etc.. Which are very good for brain health and have antioxidants. Bananas for potassium. I try to eat at least 2 to 3 fruits a day.

      As far as your veggies, raw are best. Especially in salads. Kale, spinach, broccoli, romaine lettuce, arugula, green & red cabbage, cilantro, cucumbers,

      raw onions, celery etc...just load up on greens they are good for you!

      And if you can, try to do a healthy smoothie once or twice a week. Make sure you are getting your Omega 3, Vitamin D, & iron as well. Decrease or eliminate fried foods, red meats, breads, sugars, junk food, sodas and get ready to increase Good Health!

      One day at a time, start somewhere with baby steps.

      You can do it!

      Pearlie Snm

  • camey03589
    camey03589 Missymaya

    Posted

    Welcome! I was diagnosed 6 1/2 years ago. I will tell you it’s manageable at times is worse than others in the states old chemo drugs are used, biologics work for some but didn’t me, I’m having a flare right now after having a flare in my lungs. Was just confirmed in my thyroid, sinuses, pancreas and hands that’s a real pain. Sinuses will require surgery, I have a pain stimulation implant device in my back a port for infusion therapy and blood work, seems we all manage the symptoms until there is a cure. Please do your best to minimize the stress in your life regardless of the cause, certainty is worrying will not help. It seems for everyone acupuncture, message, yoga and water aerobics help. Steroid therapy is necessary for short periods of time but recommendations don’t take it any longer than necessary.  I hope this is helpful this is what works for me, I’m sure others may disagree or have something to add. Spiritually I’m in a good place, I’m not preaching I just know when it seems there is no where to turn you find a comfortable chair and do your best to stay in it, putting yourself first. Please reach out if there is anything I can do. My doctor has ask me to do this to educate and help raise awareness to all.
  • pam67512
    pam67512 Missymaya

    Posted

    glad to find someone else suffering from watery eyes, my PCP tried to tell me that dry eyes not watery eyes were caused by sarc

  • john23984
    john23984 Missymaya

    Posted

    It's a weird illness. Can seemingly affect any part of the body. I had it in lungs and was under the care of a Lung department at local hospital for a few years.

    Seems to be stable and I was discharged ~6-7 yrs ago.

    I was treated with Prednisolone - never more than 30mg.

    They tell you this will make you put on weight. It makes your appetite go a bit crazy. I was making sandwiches every hour or so. If they put you on that I suggest laying in plenty of low calorie snacks like carrots/celery.

    It also makes you feel great at first even when you have no change in symptoms.

    The main reason for its prescription, I was told, is as an anti-inflammatory to prevent lung scarring. Mine is about 5% and doesn't impinge on general fitness - I still play tennis.

    All the best

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