HomeLatest ThreadsGreatest ThreadsForums & GroupsMy SubscriptionsMy Posts
DU Home » Latest Threads » Forums & Groups » Topics » Health » Chronic Health Conditions Discussion and Support (Group) » I am terrified of losing ...

Fri Jan 4, 2019, 01:10 PM

I am terrified of losing my sight to Macular Degeneration

I have been doing everything they ask me to, I had a good appointment with my retinologist who said I had "the best sight he would see today". But I lived with my Dad who had it and know what is coming. I can't seem to get past that. How have others dealt with that. I am 63 years old, about the age my Dad's started. I am taking alreds II and restveratol, I had been taking it before I was diagnosed.

10 replies, 988 views

Reply to this thread

Back to top Alert abuse

Always highlight: 10 newest replies | Replies posted after I mark a forum
Replies to this discussion thread
Arrow 10 replies Author Time Post
Reply I am terrified of losing my sight to Macular Degeneration (Original post)
redstatebluegirl Jan 2019 OP
NightWatcher Jan 2019 #1
redstatebluegirl Jan 2019 #3
NightWatcher Jan 2019 #5
Gothmog Jan 2019 #2
Dale Neiburg Jan 2019 #4
alfie Jan 2019 #6
redstatebluegirl Jan 2019 #7
alfie Jan 2019 #8
DeminPennswoods Apr 2019 #9
Marthe48 Jun 2019 #10

Response to redstatebluegirl (Original post)

Fri Jan 4, 2019, 01:19 PM

1. Ask your doctor about possibly using cannabis

https://unitedpatientsgroup.com/blog/2016/10/30/cannabis-macular-degeneration

It's a freakin magical medicine. It has known anti-inflammatory properties and there's a lot we don't know that it can do.

I have a plethora of conditions and so far it has helped every single one. I've gone from disability to working full time and feeling great!

Reply to this post

Back to top Alert abuse Link here Permalink


Response to NightWatcher (Reply #1)

Fri Jan 4, 2019, 01:28 PM

3. I have been for my back, if it helps both I'll be so damn happy!

Who knew that "nasty drug" I loved as a college student would reappear to help me in old age .

Reply to this post

Back to top Alert abuse Link here Permalink


Response to redstatebluegirl (Reply #3)

Fri Jan 4, 2019, 01:30 PM

5. The cbd oils were too weak and expensive. I've smoked daily for 5 years now

Not so much to get stoopid, but enough for pain relief right before bed.

Reply to this post

Back to top Alert abuse Link here Permalink


Response to redstatebluegirl (Original post)

Fri Jan 4, 2019, 01:25 PM

2. 7 or so years ago, I have a bad reaction to Actos

They took my off that drug and I have been seeing a retinal doctor every six months I am also taking Allreds. My last exam was in December and the doctor told me that the degeneration had reversed itself to a large degree.

Good luck. I am also paranoid about my vision

Reply to this post

Back to top Alert abuse Link here Permalink


Response to redstatebluegirl (Original post)

Fri Jan 4, 2019, 01:29 PM

4. I've been taking AREDS-2 vitamins for about 6 years

Over that time my macular degeneration has been essentially stable (very early stage, dry). I'm 73.

Reply to this post

Back to top Alert abuse Link here Permalink


Response to redstatebluegirl (Original post)

Fri Jan 4, 2019, 02:43 PM

6. I was diagnosed about 11 years ago

I was about your age when diagnosed. By then I had already lost my central vision in my right eye, but my left eye was clear. Now I have a C shaped area of degeneration in my left eye which is gradually getting closer and closer to my central vision. I have multiple blind areas, especially with my near vision. I don't do so bad with my distance vision so far. I too dread the day when the left central vision is gone. No more reading anything. No DU or anything on my computer. It will be put out to pasture. I have been taking the vitamins as recommended the entire time. It is dry MD, so no other treatment available. I do not live anywhere near a state with legal medical or recreational marijuana.

Reply to this post

Back to top Alert abuse Link here Permalink


Response to alfie (Reply #6)

Fri Jan 4, 2019, 02:49 PM

7. Ours is not legal, I go to Colorado 3 times a year by car.

Reply to this post

Back to top Alert abuse Link here Permalink


Response to redstatebluegirl (Reply #7)

Fri Jan 4, 2019, 05:04 PM

8. I live in Georgia

Washington DC would be much closer. Still a 12 hour drive from here. My luck, we would get stopped for something on the way home and they would find my stash. I guess just going and using it a time or two while I am there would get the trick done.

Reply to this post

Back to top Alert abuse Link here Permalink


Response to redstatebluegirl (Original post)

Fri Apr 19, 2019, 05:32 PM

9. There are some companies that offer wearable magnifier devices

Might want to check out a couple of websites for companies that sell these.

Link: https://nueyes.com/products/nueyes-e2/ (These look like virtual reality glasses)

Link: https://www.esighteyewear.com/homex (These look more like Geordi Laforge glasses)
Not for myself, but I've called this company. They were very nice and upfront about whether or not their product could help the mac degen suffere.

Reply to this post

Back to top Alert abuse Link here Permalink


Response to redstatebluegirl (Original post)

Fri Jun 21, 2019, 07:04 PM

10. I had Choroidal Neovascularization in 2000

I had laser surgery, 3 visits, which stabilized my eye. I went 19 years with no more problems. Last fall, I started getting symptoms that reminded me of that episode, migraines, feeling of eye strain, pain with brightness. I saw my eye specialist and he said my retina was stable, but I had cataracts. I put off surgery because except for brightness bringing on migraine symptoms, I felt like my vision was ok. I drive my grand kids often, so I decided to go ahead and have the cataract surgery June 6th. My eye specialist, who did the surgery, warned my vision would be blurry, maybe up to a month. I took it easy for a week, even though there aren't any limits these days. I went for my follow-up appt. yesterday and he said I had leakage on the retina. He sent me to a retina specialist and I got a shot of Eylea in my eye. I have to go back for at least 2 more shots. I liked the laser surgery a lot more, and I want to see if I can do that instead.

I am angry that the eye specialist didn't give me any specific warning that the cataract surgery might affect the retina. It is in the warnings in the papers they gave me, but no one discussed it with me. The retina specialist said that if the cataract surgery did bring the CNV out of hibernation, it is very rare for it to happen. I'm not planning to have the other cataract removed. I also found out that there are several places in my left eye that could become problems. I'm going to start taking eye vitamins, and the cannabis is sounding good. I've been sprinkling turmeric on my food and have noticed I don't have aches and pains like I used to.

Right now, my left eye vision is still blurry because it is still dilated (up to 48 hours) and my right eye has a black spot in front of it. The only good thing I saw was that it looks like the leakage is off to the side rather than right in the middle of the macula. My daughter thinks the steroid drops I had to use might have increased pressure, so I really don't even know what got me back in this scary spot.

I sympathize with you. I read a lot about macular degeneration and other retinal disease back in 2000 and I thought that there was a lot of research and advances in slowing down, even reversing vision loss from the disease. I just signed up for email from Cleveland Clinic vision center.

Good luck. Try not to worry, because you might add stress to all of your body parts

Reply to this post

Back to top Alert abuse Link here Permalink

Reply to this thread