question about optic nerve vasculopathy treatment

[illinwithoutacause]

for just over one year, i have been suffering from fatigue, eye pain, vision changes, headaches, muscle twitches and other neurological symptoms.  i have seen a neurologist who has ruled out MS via MRI, lumbar puncture, visual evoked potentials and clinical examinations.  i finally got in to see a neuro-ophthalmologist who noted that the arteries feeding my optic nerves were smaller than he would expect for someone my age (42).  he said he suspected lupus or another autoimmune disease and referred me to a rheumatologist.  all my blood work has come back normal, with the exception of a vitamin D deficiency, but my rheumatologist still feels that my symptoms are related to an autoimmune process and has started me on plaquenil.  she indicated that this process could have been triggered by my pregnancy 4 years ago, which was incredibly stressful, or possibly a viral infection.

i was, and still am, apprehensive about taking plaquenil in the absence of a specific diagnosis, although i am following my doctor's instructions at this point in time.  my main concern relates to the compromised state of my immune system in the event that i am really dealing with a viral infection.  could it make my vascular issues worse?  i have read that viruses like epstein-barr or herpes zoster can result in the vascular abnormalities observed by my neuro-ophtho, so would an immuno-suppressant medication like plaquenil leave me even more vulnerable to the effects of these types of infections?  i did have a shingles outbreak on the left side of my torso 4 months after my daughter was born.  as a result, would you recommend i ask my rheumatologist to run a viral panel on me?

i just don't know enough about all of this and want to feel good about the direction i am going in with my treatment.  i am going to raise these questions with my rheumatologist, but just thought i'd try to solicit your opinion as well.

thanking you in advance for your time.

[Garth L Nicolson, PhD]

I am not a psychiatrist, so I can't help you with the psychology of medical practice.  All that I can do is make some recommendations based on what you write in your questions.  If your physician won't even consider any outside comments, and this is more common than you think, then your only recourse is to find a more open-minded physician.

[illinwithoutacause]

dr. nicoloson,

i have one other question relating to this matter.

what do we do if our doctors do not see fit to order the types of clinical testing your web site suggests, or use the labs you recommend?

thank you in advance,
binx

[illinwithoutacause]

thank you, dr. nicolson, for your reply.

i did look at your web site and many of the symptoms are frighteningly on point with what i have experienced.

i will discuss clinical testing with my rheumatologist.

sincerely,
binx

[Garth L Nicolson, PhD]

Whenever atypical neurological symptoms crop up we always suggest that chronic viral and bacterial infections be considered.  The reason for this is that most patients that do not have typical MS or other neurological diseases almost always have various infections that cause some but not all of their symptoms.  For some examples, you can consult our website, immed.org, look under Clinical Testing for a list of some of the most common infections.