Kati
Patient in training
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The scary part is if you even suggested that, most often you would be believed to be hysterical, crazy or both. My current health care system guidelines calls for less testing for people like me, not more.
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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The scary part is if you even suggested that, most often you would be believed to be hysterical, crazy or both. My current health care system guidelines calls for less testing for people like me, not more.
@Gingergrrl,
I know nothing about this subject other than having read that book, but the book mentions Dr Josep Dalmau at the university of Pennsylvania, which has expanded its research and clinics in autoimmune neurology. Here's a tidbit from his bio on their website:
Here is a page from their website that describes some anti-bodies and associated diseases:
http://www.med.upenn.edu/autoimmuneneurology/classification.html
I noticed that the University of Pennsylvania's Center for autoimmune neurology Website said that they were finding two new autoantibodies a year. It's nice to see that somebody is out there researching this area.
Treatment
Antibody mediated neurologic diseases can improve with treatments that influence the immune system. Each disease is different in terms of how it responds to treatment, and each patient requires a treatment personalized to his individual situation. Some common treatments for these diseases include, IV steroids, IVIg, plasmapheresis, rituximab, cyclophosphimide, and Cellcept. Additionally, some diseases are known to be associated with tumors. Therefore, if a cancerous tumor is found treatment may include surgery, radiation, and/or chemotherapy. For more specific information on treatment, please see the section on associated syndromes.
New patients should call 215-662-3606 to register and request an appointment. We require patients to send medical records prior to scheduling, these records should include a cover sheet with contact information, recent neurology clinic notes, MRI/EEG/EMG reports, and antibody test results. They can be sent to Dr. Lancaster via Fax (215-349-5579) or Mail (3400 Spruce Street; 3 W. Gates Building, Neurology; Philadelphia, PA 19104)
A previously healthy 18-year-old woman developed fatigue, pre-syncope, dizziness and nausea 48 h after vaccination with HPV vaccine, Cervarix. The symptoms were initially mild and were not attributed to vaccination. She subsequently received a second HPV vaccine 6 weeks after the first injection. Her symptoms immediately intensified, and she became bed-bound with pre-syncope, dizziness, nausea, sore throat, difficulty falling asleep, frequent awakenings during the night, visual disturbance, transient episodes of confusion and difficulty concentrating. She was unable to attend school and after seeing numerous specialists was diagnosed with chronic fatigue syndrome.
Autoimmune markers were negative for antinuclear anti- bodies (ANA), anti-SSA and anti-SSB antibodies, anti- TPO antibodies, anti-thyroglobulin antibodies, anti-phos- holipid antibodies and anti-DS DNA antibodies, but posi- tive for low level of anti-NMDAR Ab (performed by Oxford University Hospital Laboratory, UK; normal range: no antibodies detected). Further testing demonstrated pos- itive beta 2 adrenergic and M2 muscarinic receptor anti- bodies (Berlin Cures, Germany). A paraneoplastic panel, including ganglionic AchR antibody, was negative. Serum anti-NMDA Ab were repeated 2 months later and were once again mildly elevated. To rule out a paraneoplastic syndrome with positive anti-NMDA Ab, a pelvic ultra- sound was obtained and did not reveal any ovarian or pelvic masses. Subsequently, a full body FDG-PET scan was performed and was also unremarkable. CSF analysis was negative for anti-NMDA Ab and other neuronal anti- bodies and showed normal cell count, glucose and protein. The patient received 5 treatments with plasmapheresis followed by a daily dose of prednisone, and her symptoms improved significantly for about 7 weeks after the treat- ment. When plasmapheresis was stopped and prednisone was tapered, the symptoms recurred. Following plasma- pheresis and prednisone treatment, a repeat serum anti- NMDAR Ab were negative.
So this POTS patient who had a low titre of NMDA receptor antibodies (and no encephalitis) was also positive for the antibodies recently reported by Scheibenbogen in a subset of ME/CFS patients. Strange paper entirely focusing on the NMDA antibody which seems unrelated to her symptoms instead of the adrenergic and muscarinic antibodies which could plausibly account for her POTS symptoms.
In any case, if the above paper had realized that the adrenergic & muscarinic Abs were important, do you think they would have changed their treatment to something like IVIG and RTX (vs. plasmapheresis and Prednisone)? My very limited understanding is that plasmapheresis can get rid of the antibodies very quickly but they always return and is never a cure. In a life-threatening case, this is often necessary but then some additional treatment like IVIG or RTX is still done later.
I wonder if the decision to use only steroids after the plasmapheresis was more financial/insurance-related vs. clinical? After all, prednisone costs peanuts whereas IVIG and RTX cost an enormous amount.
It's been a couple of years since I read Brain on Fire, the memoir of the woman who had anti-NMDAR encephalitis, but as far as I recall huge IV doses of prednisone didn't help and she had to get IVIG. Unfortunately I've forgotten the specifics but recently my other half came down with a sudden-onset post-viral mysterious neurological syndrome and gigantic doses of IV prednisone did nothing but make him severely agitated, diabetic and full of candida.
If cost/insurance were not the issue, do you think given her adrenergic and muscarinic Abs, that IVIG and RTX would have been the better treatment clinically?
I have not read "Brain on Fire" but recently read "The girl on the 6th Floor" and in her case they tried everything and it was not until Mayo diagnosed her with anti NMDA encephalitis and put her on IVIG and then RTX that she made a solid recovery. Am sorry about your other half, that is awful. I have never had Prednisone and am getting Solu-Cortef as pre-med for my IVIG and so far have not had any problems from it. Hoping he is better now?
That sounds intriguing. Tell us more.Japanese meds I bought online
This pisses me off.the alleged "top neurologist" turned out to be disinterested and incompetent
That sounds intriguing. Tell us more.
This pisses me off.
Been meaning to read that book. It's encouraging to see that even a severe, often fatal, disease like anti-NMDA encephalitis can resolve fully with time and the right treatment. It just goes to show you what is possible when doctors actually try to help instead of dismissing the patient as crazy.
He's objectively much better now but not yet able to return to work.