hey folks .....tested poz in feb and started meds .....having some vision issues

[kbNtn]

Just had an mri due to the vision and headache problems and I'm really freaked out .......anybody have any answers that might steady my nerves ?

[Jmarksto]

kbNtn;

Sorry that you tested positive, but welcome to the board.  I feel a little odd welcoming you because I am relatively new here too -- but you will find the folks here have a wealth of experience and are very supportive.  I understand being freaked out and needing a place to talk to folks - this board has been great for that.

While I can't answer your question -- I haven't started meds myself yet -- I think it would help those that can to have a little more information, such as:

When did you start meds?
Which meds are you on?
What is the vision problem?

Hang in there and I wish you well,

JM

[kbNtn]

I started meds almost immediatly after talking with my docs and trying to educate myself as much as possible ....my cd4 was at 400 and my viral load was like 174000.  They stared me on isentress and truvada ....now my cd4 is a little over 600 and my viral load is undetectable ....as for the vision problem I'm still not sure what's going on ... I could go into detail but its very hard to describe ...I have found tho that an eye patch helps cut down on the pain due to bright lights ...hopefully I will hear from the doc on the mri results very soon ....and you're right about being able to talk about stuff like this and not feeling so frustrated .....

[mikeyb39]

hi KBTN,
make sure they check for CMV with your eys exam t0 rule that out for sure.  im sure everything will come bacl fome

[kbNtn]

I will keep that in mind ...thanks for the good vibes ! I have trouble talking to my ID doctor. Her english is not the best .

[mikeyb39]

sorry, i cant seem to type on this little laptop.  CMV can be very serious to your vision, but can be treated woth antivirals if caught early enough

i'm not sure what your HIV numbers look like, but the lower they are the more you could be affected with this

[kbNtn]

In reference to my numbers .....cd4 is 650 and viral load is undetectable

[Ann]

kb, until you get the results back from your MRI, this is all just so much speculation. It's very doubtful - with your numbers - that it's CMV. While you might actually harbour CMV in your body (many adults do), it normally only becomes problematic when the immune system is severely compromised (CD4 counts well under 200).

You mention that an eye patch helps - which leads me to think this is a problem more on one side than the other? If so, shingles is a possibility. It's possible to get shingles in your eyes and it will present only on one side. If this is true and you're having the eye issues continually and not only when you have a headache, I would definitely suspect shingles. It's not uncommon for doctors to miss ocular shingles.

If being in darkness helps in general (ie it's not necessarily only on one side) and you're only having eye issues when you also have a headache, then migraine is another possibility. Both of these conditions can be brought on by stress, such as the stress of being newly diagnosed.

But again, this is all just speculation. I'm throwing out a couple more possibilities for you to bring up with your doctor if the MRI doesn't give you any definitive results. Keep us posted, ok? Thanks.

And welcome to the forums, by the way. Glad you found us. If you haven't already found the Lessons section of this website you might want to check it out. They're written in easy to understand English (as opposed to medicalese) and they're also available en Espaņol. Feel free to come back into the forums to ask any questions that may arise while you read.

Ann

[Mishma]

As Ann said without more information all we can do is speculate.

Presumably you've been referred to Opthalmology who will look at your optic nerve first by dilating your eyes and then observing the back of the eye with a lens. More tests they  might do are to measure the thickness of the optic nerve,  a visual field test (again if warranted by further examination) as well as the usual test for ocular hypertension. In the US they are so specialized I see 4 different clinics for my eyecare.

[kbNtn]

No referral to an eye doctor has been made .....and as I found out yesterday that my ID doctor has NOT been documenting my visits ...as her nurse clued me in ....which really makes me question the type and quality of care ...the only thing they keep telling me is .."this is the way health care is heading "....I've. Considered makeing a few calls to administration ...but I'm to scared that even that will have an effect on my care .....what the hell can I do ?

[Ann]

Hi KB. Please see my response to you in your other thread.

[Jayad]

I experienced photo-sensitivity (light sensitivity) when I started taking meds, it subsided after a bit