Possible Lupus? Can't get a diagnosis for anyting.

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Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 2/13/2014 5:25 PM (GMT -6)   

Hello everyone,

 

I have been between diagnosis for several months now. Doctors can’t seem to nail anything down. All the while I keep getting worse. Any insight you could give would be appreciated. I don’t know if it is Lupus, Fibro, MS, Lyme, Sjogren’s or something else…

 

July 2013- Rash appears and disappears on various parts of body most often on chest and legs. Usually lasts 10 mins or less.

October 2013- Chronic fatigue every day, all the time. Pain in all areas of body. Muscle weakness. Very bad insomnia. Night sweats. Dry patches in middle of hands. Weight loss of about 15 pounds. DX with Fibromyalgia.

November 2013- Muscle twitching in arms and legs. Cognitive issues. Frequent urination and IBS, get cold easily, chest pain.

January 2014- Some loss of sensation in feet and other areas.

February 2014-DX with Optic Neuritis, constant rash on palms of hands, painful hands.

 

I have had been tested for everything under the sun several times. I believe I was tested for Lupus 3 times now. I’ve had a lumbar puncture which was clean, tested for parasites, had my heavy metals checked, I was tested for allergies, and I had a brain and upper neck MRI done. The brain MRI did show an abnormality but the MS doc says it’s no MS.

 

Things that don’t happen: I do not have an adverse reaction to the sun as far as I can tell. I live in sunny south Florida so it’s pretty much summer all the time here. I do not get cold or flu like symptoms. I did for about 2 weeks in January but everyone I lived with had the same ailment so I don’t think it was related. One of the few places my rash doesn’t show up is on my face. Very rarely it will lightly appear near my hairline. I have not noticed any hair loss but my hair seems drier.

 

There are other symptoms I am sure I am forgetting here.. The strange thing is some symptoms have come and gone sine onset while others are constant. The fatigue, pain, rash and vision problems being the constant ones. It sometimes feels like my whole body is attacking itself. Other times It feels like whatever is wrong with me decides to pick on a certain area for a week or 2 then move on to another part of my body. The rash has been getting worse but I am coming off of Prednisone for the optic neuritis so maybe it’s a side effect.

 

I just don’t know what to do anymore. I have yet another appt with yet another doctor this Monday. This will be number 15 I think…

 

Any insight you might have would be appreciated. I feel like I’m going crazy here. Sorry for the long post.


couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/13/2014 5:45 PM (GMT -6)   
It does sound autoimmune to me, but I'm no doctor.
I do have fibro and it likes to play around my body.

Have you tried avoiding all uv light for a few weeks to see if the rashes disappear?
Uv light comes from fluorescent lights, CF bulbs, tanning beds, and sunlight.
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! :))

Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 2/13/2014 5:48 PM (GMT -6)   
Thanks Joy. I have been spending more time indoors, but the lights at my job are fluorescent and unavoidable.
October 2013- DX with Fibromyalgia
December 2013 Brain MRI shows abnormality but MS doc says it’s not typical of an MS lesion.
January 2014 Lumbar Puncture shows normal with the exception of low vitamin D.
February 2014 DX with Optic Neuritis via eye doc. Treated with 3 days IV steroids. Minimal improvement to vision.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 2/13/2014 5:54 PM (GMT -6)   
Buy some UV protective clothing. They sell them at coolibar.com, sungrubbies.com, and academysports.com.
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! :))

Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 2/13/2014 5:56 PM (GMT -6)   
Great idea. I'll try it. Thank You.
October 2013- DX with Fibromyalgia
December 2013 Brain MRI shows abnormality but MS doc says it’s not typical of an MS lesion.
January 2014 Lumbar Puncture shows normal with the exception of low vitamin D.
February 2014 DX with Optic Neuritis via eye doc. Treated with 3 days IV steroids. Minimal improvement to vision.

bwfm
Regular Member


Date Joined Apr 2010
Total Posts : 442
   Posted 2/18/2014 6:11 PM (GMT -6)   
I don't have lupus, but when I'm on prednisone for allergic reactions or asthma, my chest breaks out in little pimples. They go away when I get off the prednisone.

Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 2/19/2014 10:30 AM (GMT -6)   
Thank You
October 2013- DX with Fibromyalgia
December 2013 Brain MRI shows abnormality. MS doc says it’s not typical of an MS lesion.
January 2014 Lumbar Puncture shows normal.
February 2014 DX with Optic Neuritis.

scort
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/24/2014 5:58 PM (GMT -6)   
I have have been diagnosed with lupus a while now and it took me going to the head of the lupus foundation doctor in south florida at jackson memorial to get a real diagnosis. Cant remember her name but I will email or whatever if you are interested. I am a guy and it is a little more complicated to test so I was told.

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 2/24/2014 8:22 PM (GMT -6)   
I have never heard of any differences between genders with Lupus. Not in testing, not in symptoms, not in treatment.

Note that Lupus IS NOT DETERMINED BY A BLOOD TEST!!! You need to exhibit 4 of 11 possible symptoms, period. A blood test tells you lupus might be possible, but so might a handful of other autoimmune diseases.

Follow my link below to find the list of symptoms.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously." - Oscar Wilde

Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 2/25/2014 8:55 AM (GMT -6)   
Thanks for the info. I checked and while I definitely have the fatigue, the other symptoms are not so clear. I have had chest pain but it's infrequent. I have had joint pain but my pain is not specific to joints. It can be anywhere. My hands get red and blotchy but after looking at hundreds of photos of Raynaud’s I don't think that's what's going on. My hands get red, lacy and painful. Now they actually go numb so I think it's some sort of neuropathy. I'm still on the fence about the sunlight. Sometimes it actually seems to make me feel better and other times I think it makes me feel worse. It's been a real mystery for sure.

sueg
Veteran Member


Date Joined Aug 2013
Total Posts : 718
   Posted 2/26/2014 8:14 PM (GMT -6)   
Maybe you should see another Rheumy or Neuro just to get another opinion. And I have been told that for some illnesses like MS and Lupus it can take years to diagnose. So while that means more waiting it is better to have a definite answer than just a guess.

Akkami
Regular Member


Date Joined Nov 2013
Total Posts : 340
   Posted 2/27/2014 9:34 AM (GMT -6)   
Thanks Sueg. At this point I have seen 3 Neuros. Two of them are supposed experts in MS at a well known institution. Never the less I have another appt with yet another MS specialist when he returns to the country in April. I do have a positive test for Lyme but there is all sorts of controversy surrounding that ailment that I don’t want to get into here. If no one can give me any other answers I am going to treat it as Lyme and hope for the best.
October 2013- DX with Fibromyalgia
December 2013 Brain MRI shows abnormality. MS doc says it’s not typical of an MS lesion.
January 2014 Lumbar Puncture shows normal.
February 2014 DX with Optic Neuritis.
February 2014 Erythromelalgia

GabbyChick
Regular Member


Date Joined Jan 2014
Total Posts : 27
   Posted 2/28/2014 3:06 PM (GMT -6)   
Hello Akkami!

I am very new here so I don't know if this has been discussed.

Apparently one can have only "Skin Lupus", which Dr's, claim is milder, less problematic and fewer flares. (Yeah Right)

Anyway, you could have more than one kind of Lupus. You will need to get a biopsy of your rash. I had this done it really no biggie. It is done at the Doctors office, hopefully you have a dermatologist.

It can just be never ending at times. The sooner we identify the issue the sooner we can treat it.

All the best, I hope this helps.

Melaine
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