Undiagnosed auto immune disorder

[lesliegkerr44]

Hello, I have had two brain biopsies for a spot on my brain in the right occipatel lobe in the last 7 months. Ton and ton of bloodwork, mri's, pet scan, spinal tap done by dr and neurologist at Mayo clinic only to come up with te answer that it is not cancer(which I am thrilled), it is not infection, but appears to be uto immune that they can not pin point. I have horrible headaches and it has effected my lower right quadrant vision.
I am about to start a steroid therapy of 1g a day for five days, then once a week for five weeks, followed by every other week for 6 weeks.
I am curious if anyone here has an auto immune disorder that is not named and what are you doing or t? TIA

[TheLightSeeker]

Thank you. This makes more sense to me now.

Did you get an assay for TNFa/Tumor Necrosis Factor Alpha in relation to the inflammatory process (it is a relatively new assay and beware of being at the higher end of the labs "normal' ranges, as you might be at a subclinical level,  easily dismissed by your doctors, or given a generic auto-immune label,
but still suffering and without any answers. These ranges are just based on statistical models and often they may not serve the patients interests very well)

As a test I would consider having a TNFa inhibitor challenge, regardless, as the
assay results may still keep you in limbo. And understanding the medical hierarchy, Neurologists are pretty high up there, so chances are that most of them are not very open to the patient's suggestions, which means that it just might be another challenge to convey to them your specific concerns. Tricky!

Another area which is suspect but usually not investigated (as it is rather complex) for the initiation of  chronic disease processes,
is the activation of the JNK gene and specifically the JNK3 which is found mainly
in the brain. Inflammation, stress factors and a multitude of other stimuli are responsible for its activation.
If you were to get your glutathione levels tested, this would co-relate inversely to JNK activation -to a degree.
Elevated glutathione (the body's master antioxidant) levels, help keep the JNK gene dormant. How to achieve this is another topic of discussion, but if interested, let me know.

The following list, includes most of the tests for A/I diseases:

Sed Rate and CRP
ANA
Anti-GQ1b antibody (eyes)
Rheumatoid Factor/RA
Complement C1Q
Thyroid screen (TSH, anti-microsomal antibodies, for Hashimoto's thyroiditis and encephalopathy)
Anti-gliadin and anti-endomysial antibodies (for Celiac's).
Anti-GAD antibodies (for SPS and diabetes)
Anti-Purkinje cell antibodies (anti-Yo)
Anti-HU, anti-Ri (for paraneoplastic antibodies to neurons)
HLA testing

Many of these do not apply to your condition.

Best wishes.
Niko

[lesliegkerr44]

Sorry, indeed the vision loss or issue is in my lower left quadrant field of vision. Not the right.
They say the spot is inflammtion. Originally it was thought to be tumor, then stroke, now just inflammation or they are calling it an un-named auto immune disorder. I have had multitudes of bloodwork done at mayo and kansas university. Also have seen two different inectious disease doctors. All come up with same answer.
Not sure what you mean about antibodies not being checked for. What tests do ths? I feel like I have had every test possible done, LOL
Sorry,no the TIA stands for thanks in advance.
I have met with 3 different neurlogists to include two from the mayo clinc, and one neurologist there whose specialty is infectious disease. Also met with neuro surgeons, and infectious disease dr here in hometown. Not sure what else I could be doing??

[TheLightSeeker]

Hi Leslie and welcome to the forum.

I am unclear on this.
Information in the left part of visual field is processed in the right occipital lobe, yet  you stated "it has effected my lower right quadrant vision".
Can you please verify and further explain?

I personally think that something significant has been missed and the autoimmune is just a poor way to explain something they don't know
what it is at this point. You should have been offered something more specific.

Did they tell you why the steroids (I suspect they are just testing with the steroids),and what exactly is the spot on your right occipital lobe?

Autoimmune disorders of the brain (they are rather rare) must be thoroughly investigated for the possible mechanism of brain injury by certain antibodies (which they have not detected yet, according to your post).

Too many unanswered questions and too many loose ends.

You included the word TIA at the end of your post. Was this because you suspect a  transient ischemic attack (mini-stroke)?
Medical history, a physical exam and the MRI would have been enough to diagnose this earlier on.

I don't know about how you feel with all this, but I would be tempted to get a second opinion. And that's only my personal opinion.

Wishing you well.
Niko