Feeling scared

So I saw eye specialist and md Monday finally. She sent me to get blood work to check blood results. She ordered chest xray to check for sarcoidosis and brain mri to check for ms. I had never even heard of sarcIodosis before she mentioned it. I had briefly heard of ms but just that it was a bad thing to get. had the tests done yesterday and see her Monday for results but meanwhile, I am feeling scared and very emotional thinking I could have a mess load of other problems besides just lupus. Bad enough when I thought just lupus and maybe ra but not ready for all this other stuff. I have twin grand baby boys coming within next two months and don't want to be sick and miss out on the fun and joy of my first grand babies. Having trouble absorbing and handling it all while trying the best I can to stay positive and keep stress level down. So bummed right now and all I want to do is cry :(

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  • Try not to be afraid of "you might have this or that." I've been told that so many times that it doesn't even phase me anymore. I think if someone told me I had anything like that they would have to prove it to me before I'd believe it at this point. But I've been going through this for a long time.

  • ok, I have follow up Monday and the waiting causes me anxiety and I getting depressed and trying not to think about it. I can't sleep so exhaustion and bad brain fog make me more frustrated and depressed!

  • I can imagine how scared you are. Anything topping lupus is an added burden.

    On the one hand, there is nothing certain, who knows, maybe it's still the lupus just deciding to manifest itself differently.

    On the other hand, I just read the NHS Choices article on sarcoidosis and it seems that it goes away in a few months or sometimes longer. No medication is given other than pain killers and maybe steroids but apparently it sorts itself out. Wouldn't it be nice if lupus would do the same, huh?

    Try not to panic, do a quick research and make a list of questions and if the doctor confirms you have it, then you can be prepared. If not, then that's great.

    As for MS - lupus gives weird symptoms and it is so similar to MS, which is why most of us have been tested for it and it turned up not to be so in the majority of cases. But to make yourself feel a bit more in control, again - try to list the questions you have and take them with you after all the tests have been done.

    Today you are no different than a few days ago when you saw the doctor. Only your perception changed. So until you're certain that these things are real, try to remember that you can still be the "lupus-only" you for a few more weeks and enjoy your holidays as much as you can.

  • Thank you. I am wanting to stay positive.

  • I have been told I had MS. One more thing I didn't believe since it got worse in the sun.

  • I am hoping it is not that but left side of my face has been going numb and super bad headaches so why doctor suspects it. I been having pain under my ribs at top of stomach when I breathe so suspected sarciodosis. Still have inflammation in left eye so she switched my from predisolone eye drops to durezol eye drops which she said are stronger.

  • Just feel like I don't want to be alive if I do have all this diseases only be existing with no quality of life. I don't want a life just full of pain and emptiness and not be able to enjoy living and holding/playing with my grandbabies. I can be ok with some aches and pain but I want to be able to spend time with family, not be curled up in bed hurting and pushing people away. That just doesn't seem like any kind of life to me. I don't want to be an added burden to my children and or family either.

  • Have you spoken with your GP or consultant about your low mood? You are clearly experiencing a lot of stress and anxiety due to your health, so perhaps it would help to see what additional support they might be able to offer? We have a leaflet about lupus and depression which provides details of a lot of different services that are available. You can download it at lupusuk.org.uk/lupus-and-de...

  • I don't see GP till January or February. I have valium I take for back injury pain from before I got Lupus but I am not able to take it since I started eye drops end of September. Because of alphagan p eye drops, doctor said not to take valium.

  • Hi, welcome to the world of twins, I have twin boys.

    I know exactly where you are right now because I'm in the same place right now.

    Sarcoidosis is ok and nothing major to worry about really as it can be treated and lived with for the rest of your life although you will need treatment and monitoring etc (I have to have MRI's every year to check but that's about it now. I was diagnosed with it after I had a lump removed it's all over my body not just my lungs.

    I have had a really bad year thinking I could be paralysed any time with a lump in my spine which was causing lots of symptoms, they did emergency MRI's nearly operated then decided it wasnt the lump causing the problems and like you it might be caused bu ms as by then I had other symptoms as well. I have an appointment with neurologist on 21st Dec which took just 3 weeks to come through so that worried me. Yes ms can be bad but I suspect you are early stages and it can be treated and further problems delayed with treatment (I read last week about a possible new treatment that could halt development all together which would be fantastic news). I know one lady that has ms and is ok most of the time (she walks with sticks but then so do I, she has been stable for 2 years) but suffers flairs the same as we do with lupus.

    I also have Addison's disease, Meniers, pernicious anemia so rattle like a tube of smarties. My twins are now 9 and I live for them. If I'm having a bad time I sleep or rest whilst they are in school then I'm able to cope with two very boisterous 9 year olds then go to bed when they do. They know my limitations and we find ways to be a family around my health.

    I always say if I were a horse I would have been shot by now but I'm not and I'm alive and intend to stay that way for my boys. I'm worried about being diagnosed with ms but it's just another label that needs treating but at least after diagnosis I know what it is and how to deal with it. I have already been given leaflets etc on ms and told about the ms society who have lots of centers around the country and offer lots of activities and help.

    Twins are an extra special blessing and I'm sure you will be fine for the big day and will enjoy every moment. Take lots of photos as you will forget just exactly how small

    Etc they are (if they are small, my boys arrived 5 weeks early and weighed 4.9 & 4.14lbs but were fine and healthy). Enjoy lots of double cuddles and double the love.

    Good luck and enjoy your grand babies xx

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