topic Re: MACULAR DEGENERATION...need info... in Wellness

MACULAR DEGENERATION...need info...

Flatbush — Sun, 31 Mar 2024 05:21:32 GMT

Has any one here been diagnosed with it?

It is chronic and I have recently been diagnosed with it.

Can anyone rec. a forum or a place where I can find info from those who are experiencing it ?

I have researched it, and there are very few books (which I have already read ) and medical sites, but I cannot find info from those who have been diagnosed.

Thanks,.....it is a bit scary, so need info.

Re: MACULAR DEGENERATION...need info...

SarahW — Sun, 31 Mar 2024 05:49:24 GMT

Sorry to hear of your diagnosis. Check out Reddit and search for macular degeneration. Good luck.

Re: MACULAR DEGENERATION...need info...

Wsmom — Sun, 31 Mar 2024 06:33:52 GMT

I'm so sorry you're dealing with this, @Flatbush . I am sure Facebook has groups for it. I belong to a few groups for various issues either I or loved ones have, illnesses, etc., and they have been wonderful. If you are not already on FB you don't have to put personal info on there, pictures or anything else. You can go lurk and just read what people have to say or ask questions. There may be groups for types of medication people take.

I have found the info I have gotten on FB to be excellent. Always take everything with a grain of salt and remember everybody's experiences are different but I have found great foundation info. Even "meeting" people going through what I am going through.

Re: MACULAR DEGENERATION...need info...

I am still oxox — Sun, 31 Mar 2024 10:36:13 GMT

There are treatments for it did you see a retina specialist?

Re: MACULAR DEGENERATION...need info...

DrakesMomma — Sun, 31 Mar 2024 12:19:38 GMT

I was diagnosed with early on-set of age related macular degeneration at 38. When the eye doc saw progression at 39 I had genetic testing done. I have more bad genes for MD than the lab has seen in one person.

I don't know if any of the things I have done/are doing has made a difference. I eat more fruits and vegetables than before the genetic testing. I take vitamins. I currently take two different from Andrew Lessman. I go to the eye doc four times a year.

The only thing I've done on line is keep up on real research.

Re: MACULAR DEGENERATION...need info...

FLtricia — Sun, 31 Mar 2024 12:26:12 GMT

I have intermediate macular degeneration. They can tell that I have it, but it has not progressed. There are two types of progression, wet or dry. If wet, they can give you injections to stop the progression and vision loss. Unfortunately the dry has no treatment to stop it.

I have had this for many years, and my specialist recommends Preservision Areds-2 supplements. It has been proven to help prevent progression.

My mother also had macular, and progressed, one eye dry, and one eye wet. She had great vision loss, but went to a low vision center and was able to remain alone in her home and function.

My hope is that I may not ever have progression. My retina specialist mentioned that at one visit, and I hope he is correct.

I am sorry for your diagnosis. For a long time i felt that I was waiting day by day for "the bomb" to go off. I have decided to live my best life and deal with this day by day. I am thankful for every good vision day that I receive.

Re: MACULAR DEGENERATION...need info...

Carmie — Sun, 31 Mar 2024 12:39:10 GMT

My friend I take care of has it. I take her every couple of months to get an injection in her eye. She says the injection doesn't hurt. She has been getting the injection for about 7 years now and will for the rest of her life.

She used to have to go more often, but the progression has slowed down so the injections are more spaced apart. She also takes PreserVision.

I know it is a genetic condition. The doctor said for most people it does not cause total blindness, but it can distort vision.

It is best treated by a Retina Specialist.

Re: MACULAR DEGENERATION...need info...

PINKdogWOOD — Sun, 31 Mar 2024 12:53:37 GMT

A couple of years ago I was sent to The Retina Center here in town to further do testing on what's going on in my right eye. For 40 years or so my Opth Drs have taken tons of photos of my right eye all through the years of exams. They thought I had MD but the Dr at the Retina Center more thinks or diagnosed it at what's known as Best Disease. This is what they call a juvenile MD and it's genetic.

Well doesn't this make me go, okay mom and dad, who had it, where did this come from? It would be nice to talk this up with my parents but neither are around anymore. My Dr really dug deep into my problem by sending me to this center for a better and more accurate diagnosis but this happened years after my parents died

This looks like a patch of scar tissue right in the middle of my sight line right eye. Of course I wear glasses to aid my eye sight but I'm also developing cataracts which also need to be dealt with. I see my Opth on my birthday no less in April, cannot wait to see him so I can get cataract surgery done in both eyes to hopefully help myself out. I'l actually very excited to get this done.

I will say it's really depressing to know my eye sight is failing me. It's affecting my driving in that I'm permitted driving only in daylight. While I know the Best will not go away, will not get better but I do hope and am counting on at the least cataract surgery to help me out a lot or much better than now.

Re: MACULAR DEGENERATION...need info...

CelticCrafter — Sun, 31 Mar 2024 14:39:43 GMT

@Flatbush which type? There is age related which is not treatable.

Wet is treatable but not curable, the treatment will either slow it down or stop it but will not reverse damage already done.

What is the retina specialist telling you?

Re: MACULAR DEGENERATION...need info...

I am still oxox — Sun, 31 Mar 2024 17:00:00 GMT

My mom and my aunt had it and they both went to a retina specialist for regular shots

Re: MACULAR DEGENERATION...need info...

Flatbush — Sun, 31 Mar 2024 18:02:52 GMT

@CelticCrafter

It is ARM.

The Dr said it is dry and wet may come in time. No one know when or how fast it will develop.

So I am taking, AREDS 2 Formula.

I am unsure of its effectiveness, but for now, that's all I have...

Re: MACULAR DEGENERATION...need info...

DrakesMomma — Sun, 31 Mar 2024 18:39:45 GMT

@Flatbush - AREDS was the supplement for the study I followed for a few years when I was first diagnosed almost 15 years ago. They were slow to add things that were shown to be beneficial. That is why I switched. I should look into AREDS 2 and see how it has changed.

Re: MACULAR DEGENERATION...need info...

granddi — Sun, 31 Mar 2024 19:01:51 GMT

Do not smoke.

AREDS supplements as directed by your retinal specialist.

AL supplements will not reverse macular degeneration.

There are some good thoughts already offered here.

Re: MACULAR DEGENERATION...need info...

DrakesMomma — Sun, 31 Mar 2024 19:17:36 GMT

No supplement can reverse MD. They may only slow the progression. AREDS and AREDS2 has been the only ones studied.

Re: MACULAR DEGENERATION...need info...

Still Raining — Sun, 31 Mar 2024 19:18:14 GMT

Sorry to learn about your diagnosis. I am sure your doctors are helping you. ❤️

Re: MACULAR DEGENERATION...need info...

Kachina624 — Sun, 31 Mar 2024 19:48:04 GMT

@Flatbush. Both of my parents had ARMD and eventually had to give up driving and became legally blind. Both my sister and I have been diagnosed with it.

There doesn't seem to be a lot of information out there about what to do about it. Even my opthomologist doesn't offer much advice. When I was first diagnosed about 5 years ago, he advised me to begin taking Areds2 every day. I take it religiously and so far, so good as it has not progressed. Same with my sister.

If you have the wet form, there is treatment available but we have the dry form. Your doctor should be your main source of information.

Re: MACULAR DEGENERATION...need info...

aubnwa01 — Sun, 31 Mar 2024 22:13:27 GMT

I've been diagnosed with wet AMD in my left eye & have dry in my right. A couple of days before Christmas, I noticed the vision in my left eye was distorted & there was a spot in my central vision. I was able to see my regular opthalmologist in late Jan. who referred me to a retina specialist. I just had a 2nd injection of the drug Avastin into my left eye last week. The dr. said he could see some improvement from the 1st injection & I have 3 monthly injections scheduled. This 2nd injection caused more irritation in my eye than the 1st one did, but it's getting better every day.

Re: MACULAR DEGENERATION...need info...

JeanLouiseFinch — Sun, 31 Mar 2024 22:16:29 GMT

My mom had it and it really negatively affected her quality of life. I take supplements in hopes that they'll help prevent it, or at least delay it as long as possible.

Re: MACULAR DEGENERATION...need info...

Flatbush — Sun, 31 Mar 2024 22:34:21 GMT

@I am still oxox

I do not know if he is a retina sp.

He is an eye surgery Dr and diagnoses diseases of the eye. He was rec. by our Internal Dr we have been with for 20 years and is well trusted for all his previous reccomendations.

Re: MACULAR DEGENERATION...need info...

Flatbush — Sun, 31 Mar 2024 22:40:00 GMT

@DrakesMomma

I am surprised to see that you were diagnosed with AMD at such a young age. My Mother also had this disease. I also fit in the group that is likely to have an inclination for it.