My father has optic neuritis with full vision loss in left eye and partial loss in right

[hmansoor]

My father was diagnosed with optic neuritis and has no vision in left and limited vision in right eye. The cause is still unclear but our neuro-ophthalmologist thinks that it may be "auto-immune optic neuritis" with sarcoidosis as a cause. He has had multiple CT scans, MRIs, x-rays, blood tests and immunological tests He has even had biopsies of his left optic nerve and some lymph nodes and temporal artery. They have all been inconclusive.

He is 60 with diabetes, hypertension and has end stage kidney disease and is on hemo-dialysis. He is currently on remicaid injection every 6 weeks and very low dose cortico-steroids (5mg).

We wanted to know if you are someone or know someone with similar conditions. We wanted to ask about your experiences and any updates that you may have in addition to any prognoses. We would greatly appreciate your help.

[Scott1]

Hi,
What you have described is very difficult. Sarcoidosis can present with lesions and spinal fluid tests can be very difficult to distinguish from MS results. Your father has many complications that aren't specific to MS. How they are being treated probably takes priority to treating the ON. "Auto-immune optic neuritis" is actually a very vague term. Usually, it's -
Optic Neuritis,
or isolated ON,
or chronic ON,
or occular inflammation,
or demyelination of the optic chasm, optic tracts or optic radiations
or Higher cortical visual disfunction.
My guess, is your father's doctor may not be sure so he has given it an umbrella term. That might be as good as you will get. (sorry). Finding out which it is may be too stressful on your father.
There can be a lot of different lesions causing injury or palsies. There might be one or it might be many involved in this. There may be no lesion at all.
An important question is whether the loss of vision is painful. It can be but it might not be. I would try to determine that.
If the motor function of the eye is affected, they can offer some anti-inflammatory medications.
However, your father's late stage kidney disease is a major problem, as many medications can put too much stress on that organ.
This is very difficult and your doctor has probably considered all this, even if he hasn't discussed it with you.
Sorry I can't be more helpful.
Regards,

[hmansoor]

Thank you for reaching out. He was treated for tuberculosis because his golden quantiferon test was positive. He received a 4 month treatment with Refampasin 600 mg. He was diagnosed with peritonitis due peritoneal dialysis just 2 weeks after the completion of TB treatment. He was then treated for peritonistis for 6 weeks and was put on hemo-dialysis. He had left vision loss right after starting hemo-dialysis and had partial vision loss in right eye as well after 2 months of losing vision in left eye. He had lumbar puncture twice with no evidence of MS. His vision loss was sudden and painless and sequential (left eye complete vision loss with partial vision loss in right eye). He has no motor loss in eyes. I have gone through the literature and know that there is not much hope for recovery but I would like to keep informed about the progress of research in this field in different countries. Would you know of any additional resources? Thanks!

[Scott1]

Hi,
I'm not sure where else you can look. A lot of universities have online access to research through their libraries but you need to be a student or similar to access them. Text books tend to be obscure and only discuss ON as a side issue.
His doctor has to balance all those comorbidities. Sometimes ON resolves without a clear reason why. Lack of really obvious causes is probably a good thing in this case. It's probably just going to turn on how much success his doctor has treating his other problems.
Thankfully he does not have pain associated with this.
I hope things go well for him.
Regards,

[NHE]

Hi,
I'm not sure where else you can look. A lot of universities have online access to research through their libraries but you need to be a student or similar to access them. Text books tend to be obscure and only discuss ON as a side issue.

If you have a university near you, then sometimes you can just go to their library and save journal articles to a USB flash drive and then print them out at home.