Black dots in vision??

[Oscarboy]

Hi everyone, i have recently been diagnosed with behcets and was wondering if anyone has black dots in their vision? I have had them for a while and when I mention it to the ophthalmologists they say they can't see them, I know they are there I have to put up with them!!! Wondering if it's a behcets thing?

[Zebra]

Could be floaters. It is important to have your eyes checked by a hospital ophthalmologist having bd as they have the equipment like fundus photos to see what is going on. Your go can refer you.

[inasense]

I also deal with strange black shapes/spots/ "squiggles", as well as fractal-like phenomena which moves as I move my eyes, i.e. if I pull to peripheral vision on my left, the phenomena follow, to the right, they go right, etc. Since they first appeared about 9 months ago (along with the rest of my symptoms), they've multiplied as well.

I've seen several Ophthalmologists & now two Neuro-Ophthalmologists and they've not seen/mentioned anything showing up during tests. I hope you're able to get some definitive answers as to what your visual phenomena is/are, as not knowing can be quite maddening and very scary.

[andreafm]

Hi there....eye problems can happen quite a lot with Behcets and I have had lots of problems with my eyes which Opthamologists have not got to the bottom of.

The Behcets Society have produced a very good Factsheet on eye problems and describe the black dots that you talk about. I have given you a link to this so you can have a look for yourself and print it off so you can take it to your Dr's or specialist.

behcets.org.uk/wp-content/u...

You really need to push yourself forward with this as it can be quite serious. I don't know where you live so it would be difficult to suggest to you where to go. if you are near London the Western Eye Hospital has a walk in clinic where you can go without an appointment. There are other walkin Eye Clinics throughout the UK. I have been there myself and they are brilliant and well rehearsed in Behcets eye problems. Also the Centres of Excellance have Consultant Opthamologists, but this may take time to be referred.

If you are not living in the UK there might be other people on here who can point you in the right direction if you can let us know what country you live in.

The main thing is that you should get it looked into again as soon as possible despite other Opthamologists saying they can't see anything.

Hope this helps and let us know how you get on

[Oscarboy]

Hi, many thanks for everyone's replies,it is much appreciated and good to get an insight of how everyone else's eyes are affected.

The fact sheet is excellent thank you andreafm I will be taking that to my next appointment. I feel like the opthalmologists don't have much experience of treating behcets cases. I live in south Wales but on my last appointment my neurologist said he would move my eye treatment to the university hospital where I see him so hopefully they have more experience in treating behcets.

The eyes seem to be getting worse so has been worrying me but I'm much more reassured that I'm not mad and the dots are there despite what they told me!!!

[andreafm in reply to Oscarboy]

No problem...glad I could help. Perhaps you can push even harder now for your referral to the University Hospital as it really needs looking at as soon as possible....good luck

[katiep]

Hey there,

That was my first symptom with Behcets - get it checked out as it may be the start of uveitis as it was for me, an inflammation of the eye commonly associated with Behcet's. I'm on immune suppressants to deal with them. Make sure you get it treated, as I lost 70% of my vision before it was diagnosed (it all returned with treatment!). Good luck!

[Pshort69188 in reply to katiep]

My bachets has been a complete mirror to Katie, my eye sight and other symptoms have all reduced to next to nothing with medication.

[evo74]

Hi, I also lost some vision in my left eye and was sent straight to the eye clinic, I had uveitis and floaters, still have floaters and they drive you mad but I too are on steroids to treat the eye, push to be referred as it needs treatment. Good luck x

[Katniss12]

Yes I also have black dots/floaters... drive me nuts but nothing they can do for it. I do have in the back of the right eye some retinal degeneration that they think is like scarring from past inflammation, but not entirely sure. It looks like RPE which is an eye condition, but with my having Behcets & APS; it is more likely not an eye condition but related to one of these syndromes. Anyone else have findings of this RPE or Secondary Retinal Pigment Degeneration?

[rosshi]

hello, I have had Behçet's for 30 years my eyes were the 1st thing affected, I too would say you have floaters which can happen to anyone, but as you have Behçet's you must have your eyes examined regularly, there are a couple of pointers that should help in making good judgement calls:

A good ophthalmologist told me; you the patient are the first to notice any change in your vision because you will see anything that is going on a lot sooner than the ophthalmologist, like looking through both ends of a telescope, at your side everything is magnified whereas on his side things are microscopic - So always seek attention as the sooner you notify your eye doctor the sooner treatment can be arranged and if it is for example; uveitis which needs to be diagnosed and treated ASAP

Floaters; as I said a quite common, however you should see your ophthalmologist immediately if you suddenly have a lot of them (more than usual) or if you suddenly have big floaters (bigger than you have normally) Floaters are usually tiny particles of blood, usually not serious but all the same you must tell your doctors and get as much detail as you can, remember; your perspective they are obvious and plain to see but on the doctors side they are probably not easy to see or find except when they are many or are large in which case the ophthalmologist will not miss then.

My own experience all those years ago was not as good an outcome as you would get today, indeed I am legally blind but if then had been now most of if not all of my sight would have been saved. I would add never panic and try not to get stressed don't put your eyes under any unnecessary pressure as that wont help matters.

I wish you well and hope that your floaters are 'normal' rather than Behçet's related and also hope your Behçet's stays mild and kind...

best regards,

rosshi

[Oscarboy]

Thanks to everyone who has responded to my query, it's a great help....

I am 29, but I have experienced these floaters/black dots since I was 27, but they do seem to be getting worse so I will insist on a thorough check up and also take the leaflet provided in the link below.

It was my eyes that first started me off on this journey of Behcets as initially I had a episode of optic neuritis back in 2010. Before then I had been healthy and no health problems, (aside from mouth ulcers) after this first episode I developed other symptoms and it's taken until this January this year to get diagnosed, although Behcet's had been mentioned on numerous. I have now started treatment and hopefully it will make me feel a lot better, I mean I have been without treatment since falling ill in 2010 so anything would be a bonus to how I have been feeling.

[Eliciasmom in reply to Oscarboy]

Hello, your story sounds like my daughter, she is only 23, started with the eye problem a year ago. She has been on Prednisone started at 60mg now down to 4.5 along with Azathioprine 150 mg. Her eye floaters are always there just some times not as many as at other times. Some large some s-shape some small dots. She has quite a few and I don't think the meds help them at all but I believe they do help with the inflammation. However, since she still has pressure and liquid behind the eye they now want to put her on Infliximab (intravenous) but we are holding off on this and trying to balance her immune system. The Therapy is Auto Immune Disorders Foundation of Therapy" designed by a German Biologist.

Is anyone familiar with Integrative Medicine?