Talk to Neuro Physician on Onconeural Antibody Positive
Asking for Self, Female, 34 years old, Karachi
I have been having bizzare debilitating symptoms since 2024. Recently, I got blood tests for myositis and neuronal antibodies done. I am positive for anti-EJ and amphiphysin antibodies. Currently, I'm on deltacortril 15 mg and Imuran 50 mg which hasn't helped much. Should I be getting PET-CT as I have a family history of breast cancer? My normal CT scan is clear.
Dr. Shaharyar Abdullah - Neurologist
MBBS, FCPS Neurology, MRCPI Medicine, FEBN, SCE Neurology RCP UK, Diploma in Geriatric Medicine (Ireland),Fellowship in deep brain stimulation and movement disorders (Ireland) ireland | Karachi
1 Positive Reviews
Pet is important for Active disease. these antibodies can be false positive. Ideally csf positive is considered significant. So clinical correlation is important with every test.
hope this helps
hope this helps.
You are trying to treat your blood tests. You should sit with a good physician and discuss your symptoms
Patient
Post Owner
I am not treating anything though my neurologist is. I'm seeking second opinion on here as I do have many symptoms and am currently on immunosuppressive meds. I wished to know if PET-CT should be done or not.
3 weeks ago
Patient
Post Owner
I have already consulted a senior neurologist physician who ordered these tests based on my symptoms. He hasn't ordered CSF or PET-CT. I'm looking for second opinion.
3 weeks ago
Consult Neurologist.
Patient
Post Owner
I have consulted many neurologist. One of them ordered these blood tests after listening to me thoroughly and asking for family history. I'm looking for a second opinion.
3 weeks ago
MBBS, FCPS (Neurology) | Quetta | Book Appointment
279 Positive Reviews
to another Neurologist and Rheumatologist.
3 weeks ago
![Homeopath in Karachi - Homeopathic Dr. Basit Chawla [Psychologist]](https://staticconnect.marham.pk/assets/doctors/65905/homeopathic-dr-basit-ibrahim-chawla-homeopath-karachi-26_80X80.webp){kind=small}
Thank you for your question. In homeopathy, medicine is selected according to the complete symptoms and patient constitution. For accurate remedy selection, a detailed case history is required. You may consult for proper homeopathic treatment.
Patient
Post Owner
Thank you for answering but I'm not looking for homeopathic remedy.
3 weeks ago
Do you have progressive weight loss? If so, given the family history I would recommend getting the PET Scan.
The amphiphysin is a paraneoplastic antibody but can be falsely positive. However, given your family history, it can not be ignored.
If PET Scan is too expensive you can start with a CT-TAP. These may need to be repeated every 6 -12 months depending on your condition.
Patient
Post Owner
Thank you for taking the time to answer my query seriously.
I have progressive weight gain (8 kgs in 5 weeks) which could not be explained since my diet has lessened and I can no longer eat anything with too much oil, have cut out all junk food, etc. I have family history of autoimmune disorders and breast cancer.
I asked the neurologist who ordered the antineuronal antibodies panel if my result could be false-positive and he said that a control was used when running the test so the possibility of false results is lessened. He says that my symptoms and the rest of my tests correlate with my antibodies. Anti-EJ is known to present with normal CPK, aldolase, AST and ALT. Amphiphysin is known for causing stiffness and sensory neuronopathy which, again, I have.
I will get a PET-CT. I would have appreciated it if a CSF test was also done. But, as I'm already on immunosuppressive meds now, I believe it's not recommended to get CSF test done now, right?
3 weeks ago
MBBS, FCPS Neurology*, MRCP (UK) | Peshawar | Book Appointment
26 Positive Reviews
Immunosuppression is not a contraindication to CSF. Having said that, I am not sure it adds anything diagnostically in your case.
Also, would love to have a look at your NCS/EMG. It will give me more information.
Also, regarding weight gain, get your thyroid function tests done. Could be the cause of everything you are going through.
3 weeks ago
Patient
Post Owner
Thank you for letting me know. My NCS was normal but the EMG was not done properly. The thyroid function tests and thyroid antibodies are normal.
3 weeks ago
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Patient
Post Owner
I asked the neurologist I'm currently seeing if my tests could be false-positive and he said that a control was used with the antibody test which reduces the chance of getting false results. He believes my symptoms match my antibodies. I'm confused because no CSF or PET has been done.
Maybe I should get a second opinion.
3 weeks ago