Hi. I've been dealing with sarcoidosis for a year now... I was on prednisone (60mg) , in a wheel chair and couldn't even work or do things with my two beautiful girls. Then all of a sudden all my chest xrays showed clear and I was tapered off all my meds.. Until Christmas... I was completely paralyzed on my left side, losing vision in my right eye, having trouble breathing, and gaining weight like crazy... Well I now have had a CT scan done which showed a huge mass in my lungs and several smaller ones.. My mom was diagnosed with sarcoid at 23... Followed by lymphoma at 38.. So I now have a biopsy scheduled on the 23RD to fund out for sure what we are dealing with. I am a 30 yr old mother of two. This is now affecting my eyes, lungs, nerves and I am starting to get depressed... HELP!
Sorry to hear that Amanda. Do they think the lung issue is the sarcoidosis flaring back up or what? I have had a problem with catching colds and strep a lot lately. It is so frustrating, since I'm always under the weather and never feel up to playing with my kids. I stopped taking the metheltrexate because I thought it contributed to the colds butmI'm steal having that problem. Just remember that your not alone in your struggle.
Thanks so much.. Lately I feel as tho I am alone and that I am jusy a burden to my family.everything we plan or want to do is a .." Have to see how mommy feels" or "well I just don't think u would be up for that" I feel so out of place. They aren't sure,. With the family history I have they are checking for lymphoma... Which is scary! But so is sarcoid. What is that "m" med u were taking... What all does it help if u don't mind to share..
What do you need.?
I don't understand.. By what do I need?
Hi Amanda
Im sorry to here of your circumstances. I think its important to realise Sarcoid doesnt develop in to Lymphoma they are two totally different conditions. I do believe they present as very similar symptoms. When I was in hospital they thought I had TB, Sarcoid or Lymphoma. I actaully asked for TB because tratment was free and it was over, but no, I had sarcoid. they didnt want to discuss Lymphoma but I made them, I wanted to know. Im no medic but you current side effects dont relate to Sarcoid. Depression is all part of it im afraid, and not a very high priority on the medics list. if it is at all. I realsie how difficult it is in waiting but at least something is happening and you will get a result to know what you are dealing with.
Just realise you arent alone and be guided by the medics. perhaps you can be open with your GP and just off load on them in the meantime
All the best
Nicola
So sorry, it was meant to say what do you need!!! Fibromyalgia and Sarcoid. It's hard to know what to say, you have practical, medical and emotional needs, all at once. I was just wondering if I could help in any way.
Nickademus is right, I've had quite a few checks for lymphoma, all negative.
Oh ok.. Thank u... I don't even know sometimes what I need.. I am so emotional and I dont even know who I am at times..
No I know it doesn't turn into Lymphoma.. I am just as risk of both of them BC of my mom... I just dk. I am glad about the biopsy but scared as well... But I know it will be ok. Thank u so much for your words of encouragement...
Hello again Amanda
Of course your emotional its natural and your mind runs away with itself. Its good youre talking about it on here. We arent emotionally involved so we can offer advice based on our own experiences and be more objective. If I was in your shoes I would be thinking the worst and we are all doomed. It seems an age until the biopsy date and as much as you want it come and find out whats going on with you, you dont want it to come because you are scared of what will be the reality. As much as you can, enjoy times with your daughters. I cant have children so make the most of them. As hard as it is dont focus on the 23rd. Focus on getting through today, Then do the same each day. I think once you have a concrete diagnosis it will seem easier what ever it is because a plan of action will be in place. Its the not knowing that makes it worse. I had to have an Ebos and a bronchoscopy which were unpleasant and had CT scans, Xrays and ultrasound. I cried all the way through the ultrasound much to the girls disgust. But I was terrified of what they would find. I wanted them to find enlarged lymphnodes in my neck so I didnt have to have other things done. But I didnt want them to find them because it meant lymphoma. Then that snowballed into allsorts im my mind. As I say its the not knowing. As I said before, try to chat to your GP and off load on them. They can give you a medical perspective which may help
You don't know what your words mean to me. I was scrolling lasy night and stumbled on this forum and I am so glad I did! I am trying to treasure the times I do spend with my daughters and husband.. But I feel like I am pulling myself away from them... And I don't want to do that. But I appreciate all of the kind words BC they are helping so much..
I maybe wrong but when you are holding things back from your husband and you realise you are pushing him away, have you thought he want to help, to understand, to share to take the burden? I can understand you not wanting to put it on the kids. Maybe your husband realises what youre doing and that he wants to help but doesnt know how. Lack of communication causes war. You dont need that on ontop of everything else. Count your blessings 1 by 1. My relationship ended during my recovery. I ended it, but it was a case of youre out of hospital now, you should be better. I left him to go and live on his own planet!! My mum has been an absolute rock and she has taken alot of the burden in listening to me and yes ive not told her things. thats why Im advising you to talk. My dad who lives away from me, was the least supportive to me because I wasnt there to run around after him. So if family want to help, let them
I am trying so hard.... Just talking to you... Although a complete stranger is helping... I do want to let him in but then it's almost like if I do then its real... I don't want it to be real.. But everyday I wake up with new symptoms and I teach school on top of that. I am trying to not let it affect my life or my work... But I feel like it is taking over my life...
Im a teacher too. One thing ive learnt that Sarcoid presents more in Teachers for some reason. reading your comments I take it youre in America or that way over. Im in England. And its always easy to tell a complete stranger than it is to tell a close loved one. But if it helps then it doesnt matter who you tell.
I am in America. That's awesome to know I am getting such wonderful advice from such far away.. Besides my mom, this has been the most beneficial advice and just help I have gotten. Thats awesome that you are a teacher too.. I teach 2nd grade..
The biggest deal ive dealt with when I think it over is coming to terms with this is now my life. Humour, stubbornness, determination, tears, has got me to this point. Im 42, single, now overweight due to the steroids, on water tablets so I pee all the time, other meds upset my stomach so I end up with the runs. Skin ulcers, hair fall out. scars on my legs from the infections I had at the time, bad breathing and I have a CPAP machine to sleep with at night which leaves imprints on my face in the morning. This is not my advert in a singles column!!!! I look at that and I would run a mile. But my friends tell me if someone loves you they will love all those things as well
I do wonder if youre not sleeping well, then worrying in the night and the next day things seem worse in everything. Ive done this myself so many times
oooooh nooo not little ones!!! they always want to wee and wipe their hands on you
I am Head of Dept in a Secondary School so I teach Y7 -13 ages 11-18. Saying that mine always want to wee and wipe thier hands on each other. Thats just kids
They told me that my oxygen drops at night and that I may need a cpap. I have had 2 sleep studies done and both said about the same things... I do stay up most nights and wonder what if. I go and look at my children sleeping and wonder if that's the last time I'll see them... And the same about my husband... I have gained a bunch of weight and that just makes me more sad.
Haha.. Yes they do!!!!! That's so funny... Yes they do tend to be kids and want to put ever thing on everyone lol