I just tested positive for AChR Ganglionic Antibodies!

[sometexan84]

Did they say what that large lesion is?

 

[gbells]

I have both lupus and ME and don't assume you can't have both. The difference is with lupus the fatigue goes away with treatment but with ME since there is no effective treatment available it doesn't. This is because with well controlled lupus the cause of the problem is stopped (reduction of neurotransmitters through excess antibody attack).

If you have a history of viral onset you may have both.

 

[splusholia]

Interesting!
Is there any treatment for this?

 

[crypt0cu1t]

Interesting!
Is there any treatment for this?

Yes, if this is indeed AE or autoimmune. IVIG, Plasmapheresis, steroids, cellcept, imuran, cytoxan can all be effective

 

[Gingergrrl]

Did they say what that large lesion is?

I was curious about this, too. If I remember correctly @crypt0cu1t, you had this lesion behind your eye on the prior scan (when you first started posting). Did the Neuro explain what it is or if it has gotten bigger over time?

Yes, if this is indeed AE or autoimmune. IVIG, Plasmapheresis, steroids, cellcept, imuran, cytoxan can all be effective

I would think that Rituximab might be helpful, too (and less toxic than cellcept or imuran, etc)?

 

[crypt0cu1t]

I was curious about this, too. If I remember correctly @crypt0cu1t, you had this lesion behind your eye on the prior scan (when you first started posting). Did the Neuro explain what it is or if it has gotten bigger over time?



I would think that Rituximab might be helpful, too (and less toxic than cellcept or imuran, etc)?

Yup, not sure why I forgot that one 😂😂

 

[Learner1]

@crypt0cu1t This does look useful in helping you - hope you can get treatment that improves your situation.

For anyone else, a PET scan is a huge amount of radiation and should be undergone only if there's no other way to diagnose a problem and if whatever they think will be found is treatable. Radiation can negatively affect mitochondria, impacting energy production, and cause DNA damage.

 

[crypt0cu1t]

@crypt0cu1t This does look useful in helping you - hope you can get treatment that improves your situation.

For anyone else, a PET scan is a huge amount of radiation and should be undergone only if there's no other way to diagnose a problem and if whatever they think will be found is treatable. Radiation can negatively affect mitochondria, impacting energy production, and cause DNA damage.

Yes, I'd advise most people with ME to avoid them. I don't think that I have ME, I think mine is either autoimmune or paraneoplastic.

 

[Learner1]

Yes, I'd advise most people with ME to avoid them. I don't think that I have ME, I think mine is either autoimmune or paraneoplastic.

Well, I am glad you've been finding answers!😉