Amppe diagnosed today

[khal]

I was told I had this today AMPPE. After reading many message boards on this,i have not found anyone who has gotten their vision back.
Everyone seems to start with the same fever and headache, then spots or obstructions in the vision. My left eye is much worse(probably 30% loss) at this point.
Was put on Prednisone today - has this stopped anyones vision loss?
Going to another Doctor in the A.M. (retinal specialist), then maybe to Mass Eye and Ear for another opinion.
Please tell me someone has gotten some good news.  I have been to the doctor's everyday this week.
Thanks,
Keith


This discussion is related to AMPPE.

[davcp]

I was diagnosed with amppe in both eyes.  My left eye vision is unaffected.  However, a scar formed right in the middle of my right retina.  My central vision has been affected ever since.  Doctors have told me cell regeneration was not a consideration because my left eye is unaffected.  Please tell me if there is any way to fix my right eye.  Thank you.

Dave Capell

[mikefromlux]

Hello, I was diagnosed with AMPPE back in 1993 - I was 22 years old at the time.  For about 6 months I had visible spots in my vision - but over time, my brain was able to compensate.   I don't even notice the spots now, unless i look at a symetrical patter, such as a brick wall - or look at a bright light, then look away at something dark - even then, I almost need to be trying to see the spots.

One thing to think about - roughly 6 months after I was diagnosed, I developed Gout, and later Rheumatoid Arthritis.  RA is a immune system related disease - and many researches think that AMPPE is also related to the immune system.

[mommylynn]

My 20 yr son was in Avignon France for spring qtr.  During his study he developed "eye problems".  Initially, he thought it was the dry climate but his eyes bothered him enough that he went to a pharmacist and received some sort of eye drops.  We met him June 19 and he stated that his eyes hurt.  Both eyes were bloodshot and he was in pain.  went to a French general practioner who gave him ampicillin drops.  He returned to the states on June 25 and was seen June 26 by our optometrist.  She immediately sent him to a retina specialist who diagnosed AMPPE and prescribed prednisone eye drops.  During my son's stay in France he was subjected to Mosquito bites during the evening, etc.(No screens on the windows) He returned to school for summer session 2 classes on July 12 and started having left side numbess, tingling in the extremities, numbness of the lips.  Always on the left side.  These episodes came mainly after high physical exertion. On August 12 he was at the student rec center climbing and experienced vertigo, confusion, nause, vomiting.  He rode his bike to the hospital and was admitted.  An MRI the next day revealed right side brain ischemia.  He was transported to a larger facility where the initial diagnosis was stroke.  A TEE, MRI, LP, Cerebral angiogram revealed not a stroke but encephalitis.  His vision in the left eye seems to have increased peripheral loss.  He was treated with 6 courses of 500 mg methly prednisolone in 100 ml NaCl  12 hours. Drip rate at 100 ml per hour.  As far as we know all the blood work and CFS work was normal except for elevates white blood count in the CFS.  Are these two events linked?  What type of care should he receive as follow up?  The hospital released him with no restrictions on his activities but as the parents we have asked him not to leave the state to go to W. Va. due to lack of medical facilities.

[John C Hagan III, MD, FACS, FAAO]

Life and Medicine are both about dealing with a lot of uncertainty.

JCH MD

[MommaSusie]

She did see a "neuro-ophthalmologist". He wants to send her to another neuro-ophthalmologist to see if he can help.  (This was over 3 weeks ago, and we haven't heard anything from them.)  It was the retina specialist that gave the diagnosis, after all the others couldn't figure out what was going on.

I read the article you mentioned before coming here to this blog and have looked at it several times since.  It is helpful.

Sounds like AMPPE is a diagnosis like autoimmune disease.  And the circle continues...

[John C Hagan III, MD, FACS, FAAO]

There is no specialty called optic-neuro    You are probably thinking neuro-ophthalmologist. It seems you have already seen one.

There is more we don't know about AMPPE than we know. There is no treatment that seems to work.

If you want to learn a lot more this is a good reference: (paste in your internet browser)

http://emedicine.medscape.com/article/1225531-overview

JCH MD

[MommaSusie]

My 19 y/o daughter was told today that her vision problems were possibly AMPPE.  There are some simularities in her symtoms and what I've read, but alot of differences.  Six weeks ago her vision suddenly went "black" for about 1-2 min. Afterwards, her vision was blurry and gray.  She says that her sight seems fairly normal proximally, but is progressively blurry and gray past arm's length from her.  She does not complain of floaters or black spots. Not sure what I need to do.  She has seen an opthalmologist, neurologist, optic-neurologist, and lastly, retina specialist.  Do we still need to see the optic-neuro doc?  The retina doc said that if things didn't start to improve in another month that she would need to have another test done (sorry I can't remember the name, but it would test the electro-conduction of the retina itself.  She had MRI, MRA, CBC, SMAC, usual eye exam tests, peripheral field test, and flouroscien (? sp).   Any suggestions or help will be appreciated.

Thanks--A mom trying to figure out this one.

[omark698]

Hello, i have just been diagnosed with AMPPE in dec 2008, mu right eye worse than the left with centre vision completely gone and left one has not yet been affected but it seems to have loads of black spots. I have been put on prendisolone since the past six months to save my left eye, which is comparatively better now..I wanted to know if your condition has got nay better since its been almost a year..have you recovered any off your vision loss???

email:***@****

thanks Omar

[khal]

Thanks, I have found that article also.
How do the symptoms and prognosis differ betweem Amppe & Histoplasmosis ?

The reason I ask is that I have recently put up a chicken coup and clean it every couple of weeks. It seems to be related to a spore stirred up from the coup droppings. A friend of mine who works for a retinal specialist found out about Histoplasmosis.
I am going for the flourosign (sp) test Monday and want to be sure they can tell the difference, since nobody has mentioned this before.

[John C Hagan III, MD, FACS, FAAO]

Read this you'll feel much better "severe vision loss rare",  return to vision usually quick but may take up to 6 months.

Paste this in your browser

http://www.emedicine.com/oph/topic422.htm

JCH MD

[khal]

"I have taken care of some patients with AMPEE that have recovered all their vision.
JCH MD"

This is good to hear.
Any average length in time of recovery?
This is really starting to affect my work.

[John C Hagan III, MD, FACS, FAAO]

I have taken care of some patients with AMPEE that have recovered all their vision.
JCH MD

[distracting]

Here is a an article on AMPEE you may find helpful:

http://www.emedicine.com/oph/topic422.htm

If you are in MA I would suggest also seing a doctor an New England Eye Center. The top retina doctors there are excellent whom I've seen. Eye Boston also has some great doctors (along with MEEI). I personally have had better experiences at NEEC then anywhere (including MEEI).

D