Thank you for your time.
About a year ago I started developing these exquisitely painful deep ulcers in my hard palate and sometimes down my throat. In addition to the sores, I suffer from cognitive decline (this according to my husband :) and my speech pattern changes, I stutter and slur my words sometimes to where he says he cant understand me. Last week (with no ulcers) I developed complete vision loss in my right eye and my left arm felt very weak. I thought maybe it was from the flu since I vomited during this episode. It only lasted a few minutes and then I was left with just extreme tiredness. The next day I had mouth sores once again. Last year, at the beginning of these sores my doctor had a biopsy done on one of them which came back positive for "lupus cerebritis" so I was started on a large dose of prednisone which in fact helped so quickly I was wanting to never be without this miracle drug. However, now I know how dangerous this drug can be and dont want to spend the rest of my life off and on it. My blood test has come back ana neg. on occasion so Im not sure where we stand on the lupus. Can you possibly point me in another direction for help in what might be causing these symptoms? I wake up with dread sometimes when I feel these sores starting again, as they can completely overpower your life until they have healed (which is usually a couple of weeks.) I thank you for your time, especially during the holidays.
The usual gold standard for CNS lupus is angiography. Although, a biopsy proven lupus is pretty diagnostic. The response to steriods is also indicative of CNS lupus. What was the sedimentation rate during the attack? I would think that you need to fully resolve the issue of whether you have SLE. The angiography would be important, but maybe I would start with a MRI and MRA of the brain to see what changes have occurred. If there is some indication of CNS SLE then I would do the angiography. If that proves negative then maybe you have Herpes Simplex and are suffering from Mollart's syndrome (reoccurring sterile encephalitis). But, first rule out the CNS lupus issue.
I have similar symptoms but have never had a biopsy. I have lots of "brain fog" and have noticed a general cognitive decline. My ANA is 1:2560, but there are no other confirming antibodies. I get these mouth ulcers all the time also....they do seem worse at times I have other symptoms. My SED rate has always been normal. I have lots of joint pain and stiffness too, and take NSAIDS (Celebrex currently since I have developed gastric ulcers from more conventional ones). The ulcers are on the roof of the mouth and on the gums. The cognitive decline is particularly noticeable with memory. Sometimes I forget simple things that I have known for years. I lose everything I touch. I am only 42. My children who are teenagers are embarrassed by my memory and loss of function and accuse me of having alzeimers. I seem to be able to get no diagnosis other than undifferentiated connective tissue disease, and anytime I complain about the cognitive decline, they ask me if I am depressed. The only thing I feel depressed about are my symptoms, especially the cognitive problems....I have always been very sharp. I am getting treatment from a rheumatologist for my joint problems, and I also get a lot of treatment from an allergist because I have a lot of allergies and asthma and chronic problems with bronchitis. I have tried several herbal forumlas to try to improve mental function, including gingko balboa, ginseng, St. Johns Wort, and MSM....none have had much effect except the gingko gave me headaches. Should I see a neurologist for these symptoms, or can I trust that the rheumatologist will be able to let me know if things are bad enough to go to a neurologist. What is Mollart's syndrome....does it cause these same symptoms. I do know that in addition to the mouth ulcers on the hard palate, I periodically do get flare ups of herpes simplex on my lips. I also have recurrent problems with carpal tunnel, sometimes severe, plantar fascitis, and now have developed a neuroma on the bottom of my foot; sometimes I have various peripheal neuropathies; are these things related....would a neurologist be able to help me with some or all of these problems. Can the mental decline be considered consistent with being in your early 40s?
The posting indicating that if steriods helped then an autoimmune disorder might be indicated. However, it is far from diagnostic. So I would go ahead and have the tests done that I indicated. Bachet's would have been indicated if the ACE level in your CSF had been elevated and if you had mucosal ulcers on your rectum area or vagina. As previously stated, the gold standard for CNS lupus is angiography.
Thank you for your help. They have already ruled out herpes and I would assume encephalitis as well since I did have a spinal tap at the beginning to rule out MS I think. In comment to the poster above, I do have the joint pain and inflammation and my SED rate is never elevated that high. The doctor has thrown up Bechets but Im not sure if I have been formally tested for this. I am truly thankful I have a doctor that can see immediately the decline and start me right away on a bolus of steriods. I hate to waste another persons chance at a question by asking yet another, but since steriods indeed reduce the cognitive delcine and slurring, do you think this could be inflammation in my brain? Or even that these lesions could also be forming in the brain as well?
I thank you once again for the opportunity to at least direct these questions to someone that could possibly help me and my doctor on the road to a diagnoses.
I have read some of the messages to others posted on this forum and I wanted to say, I find you one of the most compassionate and caring indivduals in the medical profession. I thank you for your complete availability and devotion to a sometimes thankless profession.
Thank you once again,
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