Hi! I have all sorts of rashes from lupus-hives, vascular lesions, vasculitis, pemphigoid, discoid and even cutaneous porphyria and of course solar urticaria. It sounds to me like you have a...
This happens all the time. You can see another rheumatologist to get a second opinion-and he'll probably run his/her own tests. Your low B12 (looks like it's time for another shot for you-I have...
Cellcept has been wonderful for me (1500mg a day) but my rheumie told me it won't help joint and muscle pain. He said it's great on photosensitivity and nerve problems which are two of my biggies and...
I made this one minute video about how to deal with lupus fatigue, let me know if you like it. :) Love Julie http://youtu.be/foHX-Hp-dE4...
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Thanks for sharing that Lynnwood! It helps me alot. I don't often find lupies to directly relate to. I will ask my GP about a neuropsych eval. I'm sure he can find me one. I am in process of SSDI...
How did you get tested for it? Did your neuro refer you to a neuropsychiatrist? Did your rheumie? My neuro took one look at my clear MRI and dismissed me....
Thanks Lynnwood (two N's) :) I was really kind of wondering if I have or don't have NPSLE. I know I have several of the symptoms on the ACR list of diagnostic criteria here:...
I do NOT think I have cerebritis lupus. My MRI's are CLEAR. I do however have multiple cranial neuropathies, have had a tia and have very difficult peripheral neuropathy. Am I right? The point being...
It doesn't sound like your bloods are really too out of whack. Did you have your sed rate and complement levels checked? They can be helpful markers in dxing lupus. Unfortunately your rheumie is...
My neurologist is done with me. He said, "See ya in a year". I was seeing him for PN for the last ten yrs, then for TN and multiple cranial neuropathies the last two years. Then I had a killer...
Hi! I have both discoid and SLE too. It does suck. I have double blackout drapes on all my windows and had to move my office home. I found some great sun stuff called Neutragena Helioplex 360 and it...
I totally agree with Lynwood. HEre's the 11 symptom criteria and a link to a vid I made listing them as well! :) Love Julie ps an ANA positive doesn't mean you have lupus and a neg doesn't mean you...
Kookla, I actually said this in another thread to Nina but it is appropriate here too! I am also in remission of kidney nephritis. I was dx'd with SLE in March 2010 and was on the same meds you were...
I also have both. If this rheumie isn't explaining anything to you it's time for a new one. You should be informed. Yes, you can have both. Absolutely. Your not alone. Love Julie Here is a link to my...
Hi! I've had peripheral neuropathy for a dozen yrs and was dx'd with SLE in March 2010. I also have multiple cranial neuropathies, occipital neuralgia, trigeminal neuralgia and some autonomal...
You should definitely see a dermatologist and not wait until it's healed IMO. A biopsy may provide the answers you are looking for and you can ONLY get that during an active rash, so why wait? I have...
Nina, I was dx'd with SLE in March 2010 and was on the same meds you were (400mg plaquenil and prednisone as needed for flares) but I went from one flare to another to another. I also have discoid...
http://youtu.be/s0MBLvJ0ERE This is a substantial video about lupus and the people with lupus, your neighbor, your friend or someone in your family has lupus....
thank you for watching!!!!...
Hi LupusMomma, I was dx'd by my neurologist whom I've been seeing for many years for peripheral neuropathy. He did a nerve study on the left side of my face to check the amount of time it takes the...
Raven, he's full of himself. You need a new rheumie who will LISTEN to you. Here's the lupus creed: God grant me the serenity to accept the things I cannot change, > Strength to change the things I...
Right. I've been tested for MS and my MRI's are clear of lesions. I had a fiesta MRI and have some blood vessel inflammation ,but according to my neurologist, lupus is the culprit here. It may happen...
Hi all. I have cranial neuropathies, it is said to be from lupus destroying the myelin sheath on my cranial nerves. It caused trigeminal neuralgia, geniculate neuralgia, burning mouth syndrome,...
Hi everyone. Nice to meet you, I'm Julie. I was dx'd in March 2010. I made a video on the criteria used to dx lupus to help others like me who are not dx'd yet or ask if they could have lupus. Or to...