I'm new! I Hard time accepting Lupus with my Epilepsy

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New Member

Date Joined Apr 2017
Total Posts : 2
   Posted 4/23/2017 6:13 PM (GMT -6)   
I've been with an epilepsy DX for 15 years. I was born with a brain lesion. An MRI just discovered that 5 years ago. My family doesn't acknowledge I have epilepsy. So after suffering for 2 years like I had the flu joint pain fatigue, My neurologist tested me for Raynards (sp) my finger tips were always numb and sometimes turned blue. He said my blood work shows I was positive for Lupus sle . I'm not on any mess yet . I'm waiting to see the Rhemetologist. I'm scared too death. My family doctor helped a little . I haven't worked. In over a month. I'm scared and I'm a mother of a energetic 10 year old boy. I'm drinking Noni juice I was told that helps.

Veteran Member

Date Joined Jun 2005
Total Posts : 541
   Posted 4/24/2017 10:47 AM (GMT -6)   
Hi, Getting a new diagnosis is always a little scary. Just take things slowly and make sure you see the Rheumatologist. They most likely will do more tests on you to hopefully, get a definitive answer. In the meantime, this forum is a great place to ask questions. Take care and welcome.
MCTD, Fibromyalgia,Pulmonary Hypertension, Pulmonary Stenosis, High Blood Pressure, IBS, Degenerative Disc Disease, Depression, Anxiety

"No matter what happens, God is in control. He is God, I am not, what a relief!"

Regular Member

Date Joined Jun 2015
Total Posts : 146
   Posted 4/24/2017 11:43 AM (GMT -6)   
Welcome to the boards. Sorry you are here but this really is a great place for information and venting. Getting a diagnosis may take a lot of time. Patience is the hardest thing but much needed. Ask any questions you may have or just vent away. We are all here to support each other as much as we can.
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Also taking Amitriptyline to prevent migraines.

New Member

Date Joined Apr 2017
Total Posts : 2
   Posted 4/24/2017 1:45 PM (GMT -6)   
Thank You for your kind words. I do need a place to vent. I have no one to talk to about my conditions except my doctors. I have to keep what I say about my health quiet as to not upset my son. If I try to discuss it with his dad, my son will might over hear us.
My son loves his mom and dad very much and doesn't want anything bad to happen to us. I can tell he gets worried sometimes when he asks, "Why are you so tired all the time?" It breaks my heart.
I drink a pot of coffee a day, I think it doesn't work anymore.
He was a high-risk pregnancy and I was very blessed he was born healthy.
We are a humble family and try to be happy with what we have.
Thank You

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 4/25/2017 9:06 PM (GMT -6)   
Hi dmcdo1221. My Hubby has frontal lobe epilepsy, but only has seizures at night. I awake fairly often to help him. He's been on epilepsy meds since he was 15 and he's 56 now. I hope your epilepsy is mild and that your son hasn't seen you seize.

As for resting it's absolutely essential and we usually have no choice when it hits. One of our members told a story about her son. For Mother's Day his teacher asked all the kids to draw a picture of their mom doing her favorite thing. Her son drew a picture of his mom in bed because her favorite thing to do was rest. Lupus bites.

I love that you try to be happy with what you have. Most Lupies go through the stages grief when diagnosed because they feel that they have lost the life they had. I'm hope your rheumatologist gives you good news. Mine did on my first visit. He started me on medication and gave me lots of reassurance.

Oh, one last thing. When I worked my boss insisted that I try Noni juice "because it's good for the immune system." Turns out it boosts the immune system and our immune is already in high gear attacking our bodies. Noni juice made me so sick I flared terribly. Be sure to tell your rheumatologist all the meds you're taking including the Noni juice and let him decide if it is safe for you to keep taking it. Also write down all the symptoms you've been having and when you have them if you remember. Let us know how your visit goes and how you are feeling, ok? Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, anxiety; CVID (Common Variable Immunodeficiency); IVIG infusion monthly; Hypertension; Osteoarthritis of the spine, right knee, fingers, toes; Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: Better living through chemistry
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