Lupus has been ruled out for me BUT I have a question

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Jake'sMom
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Date Joined Jan 2015
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   Posted 10/2/2015 7:29 AM (GMT -6)   
My rheumy has decided that there is not enough evidence for a Lupus dx for me.

She is sending me to a neurologist to look into my cognitive issues, because they go above and beyond fibro fog.

She took away the fibro dx, and said likely Lupus, and then she took Lupus off the table, and not says fibro likely the reason for the rashes, and achiness.

It's been a rollercoaster ride, and it continues. I guess that's how it goes trying to find answers.

I just wanted to update you all, and say thank you so much for all of the advice, and support along the way.

Post Edited (Jake'sMom) : 10/5/2015 3:54:18 PM (GMT-6)


Lynnwood
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Date Joined May 2005
Total Posts : 7698
   Posted 10/2/2015 10:26 AM (GMT -6)   
You should see a neuropsychologist and have some testing done to see exactly where the deficiencies in your mental processes are.

I had severe cognitive dysfunction (quick explanation is 15 point loss in IQ points) that was attributed to Lupus and finally resolved itself to some extent when my Lupus became more controlled.

Best wishes, and let us know how things are going for you.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Jake'sMom
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Date Joined Jan 2015
Total Posts : 1066
   Posted 10/5/2015 3:58 PM (GMT -6)   
Are there any here who have both Lupus and fibromyalgia?

I woke up with mouth ulcers, and a sore in my nose again. I have this nagging feeling, and I just want to talk it out.

This was my second Rheumatologist, and I don't want to go looking for trouble, but I want to understand why my body doesn't seem to react the way other people with fibro claim theirs does. I want to understand why I keep having these "flares" of symptoms that seem so very much like Lupus.

Thank you.
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 10/5/2015 4:56 PM (GMT -6)   
I have both along with Psoriactic Arthritis.
The way I tell the difference is my skin hurts to the touch with fibromyalgia.

My lupus cause mouth ulcers and nose sores like yours.

You might need to talk to a second rheumatologist.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Jake'sMom
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Date Joined Jan 2015
Total Posts : 1066
   Posted 10/5/2015 6:18 PM (GMT -6)   
Couch, it would be a third rheumatologist. sigh

I also get psoriactic type rashes on my elbows, and when it happens, I have joint pain in those elbows.

I'm so tired of the search for answers. Feeling so defeated.
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

Lynnwood
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Date Joined May 2005
Total Posts : 7698
   Posted 10/5/2015 7:02 PM (GMT -6)   
Yes, I have Lupus & Fibro, both.

But yes, sores in mouth & nose are more "Lupus-like" than they are fibro symptoms.

If you decide you want to see a 3rd rheumy, I suggest checking with the Lupus org at www.lupus.org to find your local chapter. Then check in with the local chapter to see which local Drs are active on the advisory board -- these are generally the Drs most interested in and most experienced with Lupus in your area.

Post Edited (Lynnwood) : 10/5/2015 10:08:15 PM (GMT-6)


Barbara Lee
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Date Joined Sep 2003
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   Posted 10/5/2015 11:38 PM (GMT -6)   
I too have lupus and Fibro. My fibro was dx'd before my lupus, way, way before my lupus was DX'd. It seems common that Lupus folks also have a Fibro Dx' too.

The two of them are so alike it's hard to tell which one is flaring up. I can tell that in my experience, when I'm flaring and it's a fibro flare up, if my Rheumy has me take prednisone it does NOTHING to help me at all. Now a Lupus flare up the higher the steroids the better I fell.

It can be very frustrating trying to figure it all out. Some folks with Lupus get their DX and treatment on the first Rheumy maybe second. Then there are those, like me, who it took forever for the DX and treatment, 13 years to be exact.

Lupus is known as the disease of a 1,000 faces and it truly it. This is hard to handle the disease while getting first DX'd, it helps to have a strong support system, while you go through this process.


I sincerely hope that if you need to see another Rheumy you'll be able to get them to listen and most importantly they begin to listen to you and treat your symptoms and getting you out of this terrible flare.

I hope you get some answers soon and let us know how you're doing. Hang in there we all understand and are here for you.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Jake'sMom
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Date Joined Jan 2015
Total Posts : 1066
   Posted 10/6/2015 6:29 AM (GMT -6)   
Thank you all. It means so much to me.

Barbara Lee, I especially appreciate your input, because I know you've been in the hospital, and really fighting a hard battle of your own. Taking the time to answer my question is so sweet of you.

Thirteen years! Oh my, I'll be in my 60's. I'm 48 now, and I'm just so tired of fighting.

I do respond to steroids, and have told my rheumy as much. The visit before last Thursday, she hugged me, and said "hang in there, we'll get there." Then boom! She says, "Well, I think we've covered you, and ruled out lupus." Even though I've shown her the mouth sores. I took pics of them in between visits. Even took a nose sore pic. Gross I know, but wanted her to see it.

As I said, she is sending me to another neurologist. We will see what he says.

Maybe I'll get my second wind, and find my fight again.
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 10/8/2015 10:00 AM (GMT -6)   
Also, I forgot to respond to Lynwood. There doesn't seem to be a chapter in Oklahoma. I'd have to travel to Dallas. I have so many health issues going on, and driving to another state is too overwhelming for me.

I am going to have to see a nephrologist, because I have blood in urine, my BUN/Creatinine levels are high, and my potassium is high. I may have mentioned this in previous posts. With my kidneys acting up, I am really questioning if I actually do have Lupus. Doesn't it cause damage to organs such as kidneys?

It could be completely unrelated, but I have no history of kidney disease in my family. I'm not sure what could be causing this, because 6 months ago, my potassium was actually low.

I just really don't know whether to push harder or to just let it go, deal with what I have on my very full plate, and go on.
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 10/8/2015 12:04 PM (GMT -6)   
There are 4 major types of Lupus -

Lupus Nephritis - kidney issues
www.niddk.nih.gov/health-information/health-topics/kidney-disease/lupus-nephritis/Pages/index.aspx
Systemic lupus erythematosus - SLE -
Discoid Lupus - mostly skin eruptions
Drug-induced Lupus

Hope the kidney Dr can help you out & get you feeling better soon.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Jake'sMom
Veteran Member


Date Joined Jan 2015
Total Posts : 1066
   Posted 10/8/2015 3:05 PM (GMT -6)   
Well, I've had the urine test, and it shows blood. I've had the blood test, and it shows high creatinine. I have not had a kidney biopsy.

I'm seeing my primary doc about this issue tomorrow. I'll ask her for a referral. I mentioned these things to my current rheumy. I even printed out my chart from the patient portal showing all of my lab results.

Thank you for your help.
Stacey

Osteoarthritis, bursitis, Cervical Disc Disease - pinched nerves, Raynaud's, migraines, severe anemia, severe allergies, anxiety & PTSD
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