I'm trying to do what I can to protect myself from CNS lupus...it's not a good thing...my grandmother had undiagnosed lupus and had dozens of TIA's and so far I've been on the same "path" medically speaking....Bells Palsy (twice), shingles, anemia, blood clotting problems, connective tissue problems, peripheral neuropathy, and more....I'm thinking that now with the TN added to my fine reportoire of diseases...that I might need a more aggressive approach to treating my lupus and need to find a neurologist that knows something about it. Will my MRI show it if there is blood vessel inflammation causing pressure on the trigeminal nerve? Does that mean I have vasculitis? Does that also mean I have CNS Lupus? Is this what's causing the TN? I see my rheumie next week. Is HE going to know what's going on? My neurologist seemed to think prednisone would NOT help although I thought that if inflammation in a lupus flare WAS causing the problem that the prednisone would lessen it and that in turn would help...????? HUGS, Julie
Inflammation generally doesn't show up on MRI images of the blood vessels, Julie. And I believe that Vasculitis is confirmed by point biopsy as a rule. Lupus is confirmed by rather complex blood tests. Anti-inflammatory meds also generally don't help most TN patients, though if you do have Lupus, they might be used against the Lupus itself. As a Rhumatologist, your doctor should have at least a basic grasp of Lupus as it appears to be one of the auto-immune diseases and those tend to get treated rather often by folks in his field.
There is a Lupus community here on Ben's Friends. See the link from our "main" page. You might find some useful information there among other patients.
Go in Peace and Power
Red
hello julie,
firstly, have you been diagnosed with Lupus? this can be done with a simple blood test to check your ANA levels. your ordering physician can request the strain be identified for which disease is likely attacking disrupting your immune system. CNS Lupus has a low incidence rate for those who have or do not have Lupus within the body itself. it also would manifest in ways other than TN; headaches, cognition problems, etc.
vasculitis is a systemic disease. both veins and blood vessels are generally affected, and there is usually something visual to show for it. a person may have purplish, mottled skin discoloration on an extremity, because of the insufficient blood flow caused by the inflammation. generally speaking, if you had vasculitis, in your body or brain, you would know it. if you are very curious, a simple blood test to check your ESR, or erythrocyte sedimentation rate would inform your physician if you have inflammation in your body. this can be checked in conjunction with your ANA levels to kill two birds with one stone. be aware that if you have Lupus, your ESR will be generally elevated, however anything over a reading of 15 (some doctors use 25 as the starting point) should warrant further investigation.
an MRI and MRA (with gadolinium) will show any occlusions in your brain caused by CNS Lupus. however, if your mental functions are stable, you have no cognitive deficits, you can ambulate well, have no slurred speech, etc, it is highly unlikely you have any blood vessel inflammation in your brain. it is also further unlikely that your singular trigeminal nerve would be inflamed by a systemic disease when no other symptoms are manifest.
in summary, a blood test can address your concern of vasculitis; if there is reason to further investigate, an MRI/MRA scan with gadolinium will show any blood vessel problems within your brain.
good luck,
vesper
Hi Vesper,
What a great and unusual name. Yes I was dx'd with SLE. I have bloodwork every three months or so when they check my sed rate, etc etc....
I don't walk well due to plantar fasciitis from connective tissue problems in my feet. I also have recurring bursitis and tendonitis in my right foot. I wear orthotics and do what I can but my podiatrist says inflammation from lupus makes any procedures other than cortisone shots contraindicated.
My mental functions are mostly fine...I occasionally have that lupus fog that goes around...no slurred speech and have only had headaches since this TN business. I have had bouts of vasculitis with the purple spots on my legs and arms (little polkadots), have livedo reticularis and was dx'd with cutaneous porphyria (that's another story)...I'm highly photosensitive. I have a tendency to have vascular rashes that look like flesh eating disease. Really gross stuff.
My sed rate is usually FINE....noone knows why although I suffer from joint pain...my white count is usually very high.
I hate to be an idiot, but isn't it the LUPUS causing the TN? Isn't it the LUPUS that caused me to have Bells Palsy TWICE?
I've had peripheral nerve damage (pretty SEVERE and gets worse) for almost FIFTEEN years....Yes, I'm a type two diabetic but my AIC's have been under 6.0 for the last TEN years.
Does that help? I'm really confused....thanks, Julie
ps. Vesper....thank you...HUGS
vesper venustas said:
hello julie,
firstly, have you been diagnosed with Lupus? this can be done with a simple blood test to check your ANA levels. your ordering physician can request the strain be identified for which disease is likely attacking disrupting your immune system. CNS Lupus has a low incidence rate for those who have or do not have Lupus within the body itself. it also would manifest in ways other than TN; headaches, cognition problems, etc.
vasculitis is a systemic disease. both veins and blood vessels are generally affected, and there is usually something visual to show for it. a person may have purplish, mottled skin discoloration on an extremity, because of the insufficient blood flow caused by the inflammation. generally speaking, if you had vasculitis, in your body or brain, you would know it. if you are very curious, a simple blood test to check your ESR, or erythrocyte sedimentation rate would inform your physician if you have inflammation in your body. this can be checked in conjunction with your ANA levels to kill two birds with one stone. be aware that if you have Lupus, your ESR will be generally elevated, however anything over a reading of 15 (some doctors use 25 as the starting point) should warrant further investigation.
an MRI and MRA (with gadolinium) will show any occlusions in your brain caused by CNS Lupus. however, if your mental functions are stable, you have no cognitive deficits, you can ambulate well, have no slurred speech, etc, it is highly unlikely you have any blood vessel inflammation in your brain. it is also further unlikely that your singular trigeminal nerve would be inflamed by a systemic disease when no other symptoms are manifest.
in summary, a blood test can address your concern of vasculitis; if there is reason to further investigate, an MRI/MRA scan with gadolinium will show any blood vessel problems within your brain.
good luck,
vesper
lupus could be causing your facial pain, but the remedy for it would not be surgically invasive. there is nothing to surgically cut, move, etc, because your immune system is the culprit, not a blood vessel compression.
Bell's palsy is caused from impairment of the immune system. the herpes viruses are reactivated from a dormant state and infect the 7th nerve. obviously with Lupus, there is a long-term weakening of the immune system, so it would be plausible you could unfortunately experience the affliction twice.
vasculitis is less likely the causal agent for TN; your symptoms would be widespread and not confined to the 5th nerve.
have your physician order a MRI/MRA scan; you have a better case to push for it since you are already diagnosed with SLE. you can look for small occlusions in the brain, and check the 5th nerve for a blood vessel compression (which could also be a possibility.) if you are working with a rheumatologist, ensure they dialog with a neurologist regarding any ordered imaging.
good luck,
vesper