could my past SLE cause another disease in the future?

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sueg
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Date Joined Aug 2013
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   Posted 9/23/2013 2:05 PM (GMT -6)   
my sle has been in remission for awhile now but I still am not well, I have more sick, tired, achey days than up and around feeling good days. I am wondering if my sle has stopped and something else has come here! (Sounds like a mystery novel but it is unfortunately real life), I feel so, so bad some days, if I didn't have my family -kids grown up and just hubby & me now- I would jump off a bridge and I not only feel physically sick, I feel so depressed also-but only when the wiped out feeling is here, if I am having a rare good day I feel really good mentally as well-weird... my daughter said it m/b Lyme D. but my Rheumatic doc checked w/ 2 Lyme tests and was negative but my s/s are very similar to the LD list.
 
Any ideas? thx. Sueg
 
 
_____________________
Non-paral. Polio as child, SLE for 15+ yrs.-now in remiss., fibro, UTI's, migraines w/vision prob., IBS, dry mucous membr., memory prob., depression (duh!), PVC's, totally exhausted at times, (do the Doctors really know what the heck we are talking about when we give them a list of real symptoms---there should be a law against feeling so crappy and having a Doctor say 'ummmmmm'

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 9/23/2013 3:52 PM (GMT -6)   
Your sle never left it just went quiet for a while. Now it sounds like it is beginning to make noise again.

We never get cured or go into remission it just goes quiet.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

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

Lynnwood
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Date Joined May 2005
Total Posts : 7698
   Posted 9/23/2013 4:58 PM (GMT -6)   
I have to agree with Joy, it does sound like some Lupus symptoms may be back for a visit.

You might want to re-check your symptoms against the Lupus list - it's at the Diagnosing Lupus link below.

And starting back on what worked for you previously will show pretty quickly if it's the SLE or something else.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 9/23/2013 7:49 PM (GMT -6)   
Sueg,

I too agree with Joy and Lynnwood. Sounds as if you lupus is waking up, I've had this stupid disease for 26 years now. Mine seems to always be flaring and I can't get away from it no matter what I do.

When I was younger my periods of what you call "remission" I called it "sleeping time" we longer and longer and I was able to travel and enjoy a lot of things that we did while living in Italy. I did pretty well until about 2005, when I had to have 3/4 of my colon removed. I've done nothing but slide down a slippery slope.

I would recommend that you need to see your Doctor and as soon as possible. Maybe he can make some changes in your medication and your condition will get better really quick.

Wishing you the best and I hope you start feeling better real soon.

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

sueg
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Date Joined Aug 2013
Total Posts : 718
   Posted 9/23/2013 10:12 PM (GMT -6)   
Thanks so much for your replies. I have not realized how stressful the death of our son's wife in late Feb. has been and I have been missing her a lot. She was only 36 and they have 2 little boys, she unexpectedly died of a heart attack. I think for me- that started so many other symptoms to come and the Lupus to start up again. I am thinking of going to a different Rheumatologist at another clinic just to get another opinion and I need to see a counselor about how
depressed I feel.
 
If my Lupus is active again, then that explains all the symptoms I have been getting. I thought that since I was told there are no positive lab tests then all these things could not be the SLE. Why didn't the doc explain that it can be active w/o labs? (Is that called sero-negative?) 
 
Thx alot

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 9/24/2013 5:59 AM (GMT -6)   
Some Drs are old-fashioned and believe Lupus is only diagnosed by the ANA blood test. This is NOT true - we can be diagnosed by having any 4 of 11 clearly defined symptoms, only one of which is the blood test. In fact, we can have active Lupus and NEVER have a positive ANA.

A second opinion sounds like a great idea! Let us know how it goes.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

sueg
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Date Joined Aug 2013
Total Posts : 718
   Posted 9/24/2013 11:30 AM (GMT -6)   
Lynnwood-I looked at the Diagnosing Lupus website-it is so great for all the information!! And I have 6-7 of the symptoms for Lupus. So I wonder why my doc didn't say yes.

But I am going to check into seeing another Rheumatologist and will let you know.

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 9/26/2013 8:20 PM (GMT -6)   
My daughter said she wondered if it could be Lyme Disease. But would that have shown such positive blood and urine test results for SLE? At times in the past I have had protein in my urine, positive C3 & C4 blood complement levels, very high ANA titers w/ Nucleolar pattern and other test results I can't even remember. And I was prescribed Prednisone and Plaquenil and had good results over time--so would all this seem like it could be Lyme instead? Does Lyme go into remission-or quiet down- after Steroid treatment? And does Lyme show up as positive on specific AI blood tests?

Thx.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 9/26/2013 9:26 PM (GMT -6)   
I don't know about the other Lupus members, but I don't really know a whole lot about Lyme Disease. We do have a Lyme Forum, maybe someone over there can answer these questions.

From the little I do know, I'm still leaning toward Lupus..the test results you mention sound like lupus, the drugs you were prescribed and got better with, esp Plaquenil, is used for Lupus rather than Lyme. I don't know if steroid treatment is standard for Lyme or not -- for some reason I thought it was generally treated with antibiotics, which would do nothing for Lupus. I have no idea if Lyme shows up in AI blood tests...

Is a rheumy qualified to diagnose Lyme? (I have no idea.)
Sorry I don't have more Lyme knowledge!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

sueg
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Date Joined Aug 2013
Total Posts : 718
   Posted 10/2/2013 10:19 PM (GMT -6)   
I went to the Rheumy again this week and told him about some new symptoms-blurred vision, and numb lips & fingers and extreme fatigue-- he thinks it is just Fibro. And I am still feeling sick, I asked him about the Lyme test results and he said there were no positive bands at all. And all my Lupus tests were negative so he referred me to a Neurologist (because of the migraines, numbness, fatigue) Hope it is not MS.....any ideas? Maybe I should just stop looking for answers, that's what my husband says!

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/2/2013 10:40 PM (GMT -6)   
A neurologist can determine ms with a mri. Ms has a specific pattern in the brain.
My lips are never numb with fibro though.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

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

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/7/2013 11:46 AM (GMT -6)   
You said your lips are never numb, mine are and my fingers get that way too, and I get other signs also. I have a lot of weakness when I go up a flight of stairs--I just feel so wobbly and worn out but I thought it was arthritis and I have trouble starting and stopping my urine. Do you have these also?

Maybe I am just getting older. But when I get a sick, tired achey day then it bothers me and I know something is wrong.(Because I can barely get out of bed and need to rest after I shower) I am having a real problem and it is not just an ache here and there. This is me being in bed feeling crappy, not going anywhere, not seeing anyone for days, please shoot me type of sick.

So my Lupus is not back but it feels like something is very wrong with my body!

What do you think? (I see a Neuro tomorrow) Thx--Sueg

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7698
   Posted 10/7/2013 11:57 AM (GMT -6)   
I hope the Neuro is able to answer some of these questions for you! Sometimes it's very difficult to pinpoint the causes/diagnosis of some symptoms, but I hope they can at least find some treatment that will give you relief from these difficulties.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 10/7/2013 1:08 PM (GMT -6)   
Seug, I just realized I've been talking to you also on the fibro forum. Duh....
If you have a previous history of SLE you probably are having a flare.

I have both lupus and fibro and they both can get you confused about what is bothering you. What I do is treat each thing as it rises up.

I hope the neurologist can help you with the numb lips and fingers issues.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, Allergies, and benign familia tremors

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

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 10/8/2013 4:24 PM (GMT -6)   
I thought that the SLE was back also. I was having a lot of symptoms so I was pretty sure it was back. But not according to my Lab tests, so they are checking on other things. They did all types of blood tests and it was all negative. So no Lupus!
 
I went to see the Neurologist who my Rheumy told me about. He checked me out and gave me a RX for a med for pain and fatigue. He said if that doesn't work then he will order some Neuro. type of tests. He said it might be a nerve problem in my shoulders and neck. So I will just go along with him on all this and maybe it will work or we will keep on testing. So no answers for now and just more waiting. But I have had 2 feeling good days so---it's OK for now!
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