SYMPTOMS BUT NO DIAGNOSIS

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mcginnis
New Member


Date Joined Aug 2012
Total Posts : 12
   Posted 8/26/2012 12:18 PM (GMT -6)   
hi,i have almost all symptoms of lupus except rashes.i did have one that covered my whole body but was gone in 2 days.my finger nails peel half way down to the nail bed.my hair is thinning bad on the front of my head,i won't even call what i have as fatigue,it's more like exhaustion.people tell me i look tired and ask me if i'm alright at work.i have continuous nasal sores,once in awhile mouth sores.my joints hurt from head to toe.i have no obvious swelling ,though and joints do not feel warm.i have a strange cold feeling on the back of my left arm.i have raynaud's too.i have had slight low grade fevers but nothing lasting or high.i have headaches in the back of my head a lot,ringing ears,and nausea.i'm not over weight,nor do i drink or smoke.i am 46 years old and female.i might add that i've never felt healthy most of my life.my doctor has ran all sorts of tests,ana's,sed rates,etc and i have a large bill and no answers.an ob/gyn told me several years ago that i have interstitial cystitis(IC) because of bladder pain, frequency and hematuria(micro blood in urine).i'm wondering if there is a correlation here?is it really IC or a lupus symptom?the doctor said i am vitamin D deficient now.but other then that he dismisses me as having anything but possible fibro.i am upset because i think i have way too many symptoms and really no diagnosis and with no diagnosis,i'll never be any better off.my hips and knee joints hurt sometimes so bad and are so stiff,that it makes me limp.i do have a heart rhythm disturbance and take meds for that and my cardio has checked it out.just said mild defect.memory is bad and my head feels like it is in a fog and i can't think straight!please answer if you understand or have dealt with this.two questions....1.mostly am wondering if the IC thing is indeed related as a symptom to lupus?.2.since my ANA was negative,is that a definitive no to lupus?
thank you.

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 8/26/2012 12:37 PM (GMT -6)   
Lupus is diagnosed by a collection of symptoms and bloodwork. So a negative ANA is not a definitive no for lupus.

You don't mention what Dr you are seeing. A rheumotologist is the Dr who diagnoses Lupus. If you are seeing a rheumy, perhaps you should get a second opinion.

Are you being treated for the IC? I have no idea if it is related to lupus or not, that is probably a question for your doctors.

Check out the Lupus Diagnosis link in my signature, that will help you determine if your symptoms are similar to lupus or not. Keep in mind that many diseases have overlapping symptoms so even if you have lupus symptoms you may not have lupus.

The most important thing is whether you are getting treatment that relieves your symptoms or not. The diagnosis is sometimes not nearly as important as feeling better!

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

mcginnis
New Member


Date Joined Aug 2012
Total Posts : 12
   Posted 8/26/2012 1:23 PM (GMT -6)   
my internist is sending me to a rheumatologist this friday.
thank you!

scaredmom2
Regular Member


Date Joined Aug 2012
Total Posts : 47
   Posted 8/26/2012 4:34 PM (GMT -6)   
I have had IC like symptoms as well--in fact that was my first symptom. Very odd, I had a UTI, got anti-biotics, it went away then a few months later I had what I thought was another UTI, yet that had no pain and did not go away with anti-biotics. It was then that my bladder issue began and it lasted a long long time. I now have some frequency, but it is no where near as bad as it once was. I have not been dx'd either--all these years of weird symptoms--mainly MS-like, for 24 years and I thought I had MS even with negative MRI's. I was tested about 14 years ago for IC-but it was negative. Although, at the time, my urologist did not even think IC was a "real disease". It was just coming about at that time. But I did have the microscopic blood in the urine everytime it was tested.

Anyway, I am thinking now, it has something to do with lupus. I read somewhere about lupus cystitis. All this time I thought I had MS with all my tingling,numbness, pricking, etc, and then out of the blue last week at the beach I got some rashes on my leg and redness in my cheeks. also I started getting some mild joint pain in my wrists and ankles that started several months ago. My eyebrows are thinning as well. Maybe its the age-Im 45, but I doubt it.

mcginnis
New Member


Date Joined Aug 2012
Total Posts : 12
   Posted 8/26/2012 5:30 PM (GMT -6)   
thank you for replying.i doubt it is your age either.i'm 46 but have felt bad on and off most of my life.i'm not a hypochondriac either.lol!just because we are in our mid 40's doesn't mean we should fall apart.wishing you better days too.

scaredmom2
Regular Member


Date Joined Aug 2012
Total Posts : 47
   Posted 8/26/2012 6:47 PM (GMT -6)   
Well,my sister has like no eyebrows left and she doesnt have lupus. So maybe thin eyebrows runs in our family-lol!

I have felt fine until I was 21-then the bladder issues started. I posted my first post on here talking about my symptoms. I have had symptoms for 24 years-on and off-but for the most part I have been fine-the symptoms are mild and do not cause me any issues as far as not being able to do anything. I have not had the debilitating fatigue, although I am tired alot. And I aches and pains-just the minor joint pain that comes and goes and right now I do not have it. But, I am still VERY anxious, scared and depressed. My 15 year old daughter is also displaying AI symptoms and Im even more worried about her. There are only 10,000 children in the country supposedly with Lupus and I read the chances of your child getting it is very low--so I just cant believe this is happening to me right now. I feel like the world is crumbling, or rather my world is crumbling and there is nothing i can do to stop it.

I want to go to a functional medicine dr but the one near me does not take my insurance, so the out-of-network bills may are going to be too expensive. Dr. Fuhrman does take my insurance though. Have you heard of him? He has been on Dr. Oz and wrote Eat to Live and other books. His office is about 40-45 minutes from my house but his diet plan to combat Lupus seems so hard.
My husband said just go to the rheumy first, get a dx if possible, then do the research. Maybe Im doing it backwards, I dont know, I just want to be prepared and know what my options are. I really do believe in the Functional Medicine approach. Has anyone here been to a Functional Medicine Doctor. Dr. Mark Hyman is a famous one. He is in Massachusetts. His website has alot of good info.
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