New Here and Quite Anxious!: New here...And... - Macular Society

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New Here and Quite Anxious!

TB1975
TB1975

New here...And quite anxious! Was diagnosed with the early onset of change in pigmentation about 2 years ago, by an eye specialist with the possibility of AMD. I started noticing the wavy lines in certain areas in my sight, which prompted my first eye exam in my late 30's. After the specialist Dx, I have since tried to ignore the whole idea of any possible eye issue until recently. But, I went and did one of those DNA tests and it was discovered that I tested for both genetic variants (Y402H variant in the CFH gene & and the A69S

variant in the ARMS2 gene). So under my own researching, I have since self-diagnosed myself with JMD (Juvenile Macular Degeneration), as opposed to AMD. Under the assumption, I was most likely born with this, but considering I never had any eye issues until my late 30's, it went unnoticed? Either way, of the late, I have been noticing more wavy areas in my left eye and my eyesight is more blurry. This led me up to a recent eye exam and I am being sent to a specialist once again. As I can see the progression since 2 years ago when I last went to see a specialist. So with this being said, I started reading up on this (AMD/JMD) and came across this website. I would love to hear from anyone who may be more well versed in this area, that may have some positive thoughts for me or some guidance? Perhaps, some information on how to get more involved in some clinical trials here in the States? I do understand the risks that may come with clinical trials, but at this point, I feel I have nothing to lose. I really am just looking to talk to others who may understand a bit better as to what I am experiencing. As this fear of the unknown is quite overwhelming and as much as I try to keep myself distracted, it really is not that easy lately. Any advice or tips would be greatly appreciated. I will say this much, I have started with AREDS2 supplements and my new computer glasses / sunglasses do block out the blue light. Sorry for the long rant...

8 Replies
Hidden
Hidden

Hi TB1975

I fully understand that you are anxious; having problems with one's eyesight is scary. But first of all I would like to say to you - you need to take a step back a little. I do not think it is possible that you can diagnose yourself. Sure, you know when there is something wrong with your vision if your sight is blurry and you see wavy lines, but it could have a number of causes - not only MD. Only a specialist has the equipment and the knowledge to see and understand exactly what is going on in your eyes. So number one - see what the ophthalmologist has to say before you worry yourself sick.

You mention the early onset of a change in pigmentation 2 years ago. Did the consultant mean discolouration of the retina, perhaps due to drusen, or a structural change of the pigment epithelium? It could well be MD, but it does not follow. And even if it was dry MD it may take a long time to progress and may never turn to wet MD. Ask the consultant lots of questions to put your mind at rest.

As for your DNA test - to test positive for a number of variants simply means that you may be more susceptible for certain illnesses but it does not follow that you are going to get them. I can see you are overwhelmed by it all, and being comparatively young can not help your distress. I understand how you feel . Most of us have had our moments of panic whatever our age. But it will get better as time passes and you will learn to understand your condition and to deal with it. Be kind to yourself. Participate in pastimes you enjoy. It seldom is as bad as it at first seems.

Wishing you well.

TB1975
TB1975 in reply to Hidden

Thank you for kind words and I will try to slow down. As you can imagine, from all the reading I have been doing, I am really just freaking out. And I agree, I should not go self diagnosing, I am just very overwhelmed at the moment. Since I have not been officially diagnosed with anything yet, I really should stay off the reading. It was just mentioned 2 years ago, so it stuck in my head. I am not very educated on AMD, which is why I am glad I found this site, I do hope to learn more and hopefully put my mind at ease. Perhaps the Hx I provide below may be better understood by someone on here. As for me, if I google anymore today, I may need blood pressure medication next. JK lol

But in response to the questioning you had, I just today received my Hx from my specialist up in NY (recently moved to Florida) and this is what the report stated from Sept. 2016 - Right Eye Macula - Few Small size Drusen. No Hemorrhage, Subretinal Fluid, or Edema. Left Eye Macula - RPE Changes (Nasal). Pigment Clumping. No Hemorrhage, Subretinal Fluid, or Edema. Mild RPE changes with a single focus of RPE clumping in the left eye and trace hypopigmented RPE changes in the right eye.

As previously mentioned, the blurred/wavy spots have recently become more profound. So I do have this follow up with a new ophthalmologist coming up in a few weeks. I requested my Hx from my previous ophthalmologist from 2 years ago to provide this new specialist to see if any noticeable difference may be noticed.

Sending you a hug x Breathe. Again.

Find something to take your mind off your worry until you've seen the specialist and can then focus your energy on whatever condition it is that you have.

I do get where you're coming from - excluding the DNA check did the same myself! But ayayay is right. I had a list of 6 things and 5 were wrong! Worrying is such a waste of energy and just robs you of enjoyment of today.

If you must research then restrict yourself to identification of the questions you need to ask and the likely treatment options so that you can have a meaningful conversation with your specialist.

The Macular Society website is excellent.

Good luck going forward.

TB1975
TB1975 in reply to eyesright

Thank you so much...I will most definitely wait for the specialist going forward. As for keeping distracted, that will be my only hard part. I do appreciate you taking the time to reply with some words of encouragement. This website is full of some great information and the support thus far seems amazing. Thank you again....

I got enormous help talking to someone on the Macular Society Helpline, (0300 3030 111).

I wish you the very best!

TB1975
TB1975 in reply to fed13

I did notice the helpline number, but unfortunately I am in the US, would you happen to know if there would be any Stateside affiliation with this that may have a similar toll free number I could call?

eyesright
eyesright in reply to TB1975

Hi, they do have an email helpline too ( I've seen posts on here saying you don't have anything like the Mac soc in the US).

Rosalyn-helpline
Rosalyn-helplineAdministrator

Dear TB1975,

It may be worth you consulting the information on our website:

macularsociety.org/

We do have overseas membership:

macularsociety.org/become-m...

Please do not hesitate to contact us if you would like to discuss any concerns further:

help@macularsociety.org

Kind regards,

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