(Closed) Just found out I most likely have Lupus

posted 4 years ago in Wellness
Post # 2
Member
3900 posts
Honey bee
  • Wedding: January 2017

Awww be Im so sorry to hear that *hugs* try not to worry too much untill you have a definite diagnosis. And if you do seek some support groups to help you deal with this. This must be so terryfying and overwhelming I cant even imagine. All the strength to you and enjoy your holidays as much as you can. If it’s any consolation i went to college with a lady who was about 45 years old and I know she had Lupus, she had a healthy 20 year old daughter (idk when she was diagnosed though before or after having a baby)

Post # 3
Member
1160 posts
Bumble bee
  • Wedding: March 2017

*hugs* I’m so sorry! I don’t know a ton about it, other than what I’ve seen my friend deal with. For the most part she leads a very normal life. She has two boys (conceived before lupus diagnosis) but works full time and is a single mom.

Try not to panic until you hear from the Dr. That’s easier said than done, though, I know. 😞

Post # 4
Member
10555 posts
Sugar Beekeeper
  • Wedding: City, State

FWIW, my step mom has lupus and really doesn’t experience any difference in her day to day life. Could be just cause she’s too mean for disease to effect her but I thought it might give you some hope that there are people out there who can still lead normal lives with lupus.

Thinking of you!

Post # 5
Member
4242 posts
Honey bee
  • Wedding: August 2015

Autoimmune diseases can be scary, but when you take care of them — take medications, go to regular doctor’s appointments to keep an eye on it, etc. — it will be just fine.  I have Crohn’s disease which is an autoimmune disease that affects the digestive tract.  My life has forever been changed by Crohn’s, however it does not define me and it is not life-threatening.  It CAN be, if not taken care of or if it is a severe case, but generally it is manageable.  Most autoimmune diseases are like that.

Post # 6
Member
1603 posts
Bumble bee
  • Wedding: October 2016

I’m sorry to hear this. I was recently diagnosed with arthritis (similar to lupus in that it’s also auto immune and has issues with inflammation) and can sympathize. I cried probably every day for a week before my mind was able to start processing it. Im also newly married and really sad at what this means for my new marriage and how much more difficult it might make life. I still feel sad and a bit bitter about it and know that that feeling will come and go and it’s ok to feel that way. I’ve started on medication and I’m slowly seeing some improvements. Being able to see improvements has made things much easier to process. So with that, I have to hopeful/positive things to share with you:

1. While hearing a diagnosis sucks, it’s better than not having anything. Putting a name to it, means that doctors can actually figure out treatments and medication. Without a name to this disease, you will continue to feel bad without much hope of figuring out treatment. It sucks at first, but the known is much better than the unknown. 

2. There are a lot of improvements in differnt auto immune treatments and medications. By working with your doctors and other care givers, you will figure out things to make you feel better. Your life may be different from how you pictured it and there may be adjustments, but there are treatments and different solutions out there.

Post # 7
Member
216 posts
Helper bee
  • Wedding: September 2017

Hey there, just wanted to reach out to you. I was treated for Lupus for 2 years before they figured out it was a different disease. I also have a high ANA titre, but some people just have a positive ANA naturally without any illness. Did they do a lupus panel, or just the ANA titre?

Lupus, like many other autoimmune diseases, is usually a diagnoses of criteria. Meaning, you must have so many out of a number of symptoms in order to have a diagnosis. Some symptoms point more heavily towards SLE. Do you have a malar rash (a red butterfly rash across your nose and cheeks)?

I hope you don’t stress about it too much over the holidays. There’s nothing that you can do about it. You have it or you don’t, and if you have it you fight like hell. It’s scary, but the one of the worst parts is what your doing right now: worrying about test results! And that is one of the things you can actually control. Plus, stress makes symptoms worse. 

I know how frightening and upsetting this whole process is, and how much you need a strong support group. If you have any questions about my experience, or if you just need to talk to someone feel free to PM me anytime! 

Post # 8
Member
63 posts
Worker bee

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spearmint :  hi Bee, I’m so sorry you’re going through this. I was diagnosed with Multiple Sclerosis five years ago and I know how stressful, unnerving and anxious you must be feeling. The ambiguity and not knowing is super stressful but pleeeeease stay away from google. It’s a black whole and very scary and overwhelming especially if you haven’t formally been diagnosed.

i have a former colleague who has lupus and while there are times she doesn’t feel well, for the most part she’s doing really well. Like PP said, the effect an autoimmune disease has on someone often depends on how well you take care of yourself (which is also why you should avoid Google, it’s just filled w scary stories and you don’t need that stress right now). I know you’re keeping this all under wraps right now and I totally get that (most of my extended family still doesn’t know about me) but it’s really important for you to have a strong support system right now, it’s not healthy for you to bottle it all up. I’m crossing my fingers for positive news Bee😘😘 

Post # 9
Member
307 posts
Helper bee
  • Wedding: LA Athletic Club

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spearmint :  Hi bee! 

Your post hits home right now. I just tested positive for ANA with a speckled pattern too. Lupus runs in my family and my doctors originally thought it could be it, but now they are thinking a muscle tissue degenerative disease. I am in the process of getting more tests run since it is difficult to diagnose an autoimmune disease, but I can completely relate to how scary this process is. Stressing out will only make everything worse, so try to stay positive.

Post # 10
Member
89 posts
Worker bee
  • Wedding: August 2017

Sorry to hear this.  Just make sure you and those around you stay ‘healthy’.  

My cousin was diagnosed with MS and now stage 1 breast cancer and when I last talked to her she mentioned her husband wasn’t being healthy (now I know it was a heroin problem) and I told her that he needs to stay healthy for her for when she can no longer be.  She ultimately left him.

Post # 11
Member
322 posts
Helper bee
  • Wedding: November 2016

Doctor appointments stress me out, I remember how difficult it was getting diagnosed with an autoimmune disease (rhuematoid arthritis) and I highly suspected it. Just letting you know, that you aren’t alone. It is scary, especially when you are still waiting for information. Stay positive, your doctor will help you. And if it is Lupus, you will find support and a way through. Just be gentle on yourself.

Post # 14
Member
63 posts
Worker bee

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spearmint :  keep the appointment. Write down your questions and make sure you get answers. I know it’s hard when you’re in such an emotional state but I found it easier if the questions are written down. If you can get the referral that doesn’t hurt either. Also, it might help you to get copies of these test results in case you do go to another doctor.

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