Doubtful Diagnosis

[Indoubt]

I was diagnosed with MD in my mid 20's and was advised a the time there was no treatment and discharged. Then when I was in my mid 40's my eyes were rechecked and the Ophthalmologist at the time remarked that as I was diagnosed 20 years earlier it must have been very mild at the first diagnosis as although he could see signs of the condition he would have expected to see evidence of a server condition 20 years later. During a recent routine Optometrist app where the condition was mentioned I aired my doubts about the diagnosis. The Opt agreed and said it could be Stargardts or even just the natural pigmentation of the macular region in my eyes. Armed with this new information I then returned to see an Ophthalmologist hoping to have the condition removed from my medial record but was told by him and to a room full of students that I did have MD but nothing like he had seen before and there was no cure and he discharged me. He was very dismissive and wouldn't even consider an alternative diagnosis. Given that I was diagnosed over 30 years ago without any symptoms to date does this sound like MD?

[Ceri2]

Hi,

How frustrating, although fabulous that it sounds as though whatever condition it is has remained stable for so long. There are many different juvenile macular dystrophies, often with onset in teens and twenties. Stardgardts is one of them and there is some information on 5he Macular Society website. I wonder if the ophthalmologist that you saw was a retinal specialist or could it be worth asking for a referral to one? Good luck.

[eesnapal]

I think I would seek a second opinion from a consultant.

[Melene]

I found ophthalmologist useless. Visit a Retinal specialist.

[No2020 in reply to Melene]

Just to present another view: my ophthalmologist saw the beginning of dry Macular degeneration at annual visit. Provided me with Amsler grid. Got wavy lines several months prior to next checkup. Called and got checked out. Confirmed it had turned into wet. Appointment ( by ophtalmologist) with Retina Clinic. Started injections. In the US.

[Indoubt in reply to No2020]

Thank you No2020. I was given an Amsler grid and fortunately I have no sight problem. I may contact my GP but i am conscious that time taken to potentially undiagnose me will take up valuable NHS resources from someone who does gave problems and needs to see/speak to someone. I will speak to MD society today. X

[Rosalyn-helpline Partner]

Dear Indoubt,

Did you see an ophthalmologist who is a retinal specialist with additional specialisms in genetic and hereditary conditions? If not, it would be worth you getting a referral to one via your optometrist or GP. If you contact us, we can provide you with details of the nearest one to you.

The Macular Society Advice and Information service is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

[e-mail]

Kind regards,

[Indoubt in reply to Rosalyn-helpline]

Thank you Rosalyn - I will call MD society today. X