As you have rightly said, yours is complicated case, since trained doctors with sophisticated diagnostic tools at their disposal are not able to find out the reason. Nevertheless, putting my self in your shoes and thinking aloud , I am giving some ideas to you.
The first thing that comes to my mind after reading your case is glaucoma, which I am sure your doctor must have tested you for. Just in case, it is not done, I think it should be checked for. The next thing to consider is if there is any possibility of any fungal infection, like a candida yeast infection. Do you have any other symptoms of an yeast infection like increased Dandruff or an IBS ? Also if any infection you have in the facial area like sinus infection, then also it can affect the eyes as it can propagate through venous feed back.
Here are two links that deal with glaucoma and fungal eye infection, where you can get more details:
1. http://www.medicinenet.com/glaucoma/article.htm // glaucoma
2. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC88956/ // Yeast infection of the eyes
Needless to say there could be many other conditions that might show up your symptoms. Since you can not take any risks with your eye, the best thing for you to do will be to consult another better equipped eye hospital, where the doctors will have wider experience to deal with rare diseases.
Thank you so much for replying really appreciate it. I think they have checked for glaucoma several times. They checked the pressure in my eyes everytime I have visited and its comes back normal.
I have IBS type symptoms along with a bunch of other symptoms I've been having for two years such as extreme fatigue, muscle and joint pain, dizziness,fevers, digestion problems just to add to it. In the past I've had a lot of blood tests, MRI, CT scans and nothing appears to have come up. I don't know what to do just feel so lost.
I asked to see other doctors but there isn't any higher doctors in my area with the level of experience with the ones i'm seeing already. Is it possible this could be Systemic vasculitis? No blood test has shown this up but just thinking it might be. How would you test for a fungal eye infection?
One other thing I got to mention was I do have sinus problems. It feels like inflammation but theres nothing doctors can do for it.
So, glaucoma can be safely ruled out.May be you should check up with your doctors if they could surely rule out fungal infection as well, I hope they would have already considered this.
In case they have not looked at this possibility, the article under the second link given in my earlier post can be referred to them.
For your information, you could read the paragraphs following
" Bloodborne Infections: Endogenous Endophthalmitis " heading from the above article and get a lot of details regarding fungal infection, symptoms and diagnosis. I am copying one important para for your ready reference:
" Endophthalmitis is recognized clinically by the presence of one or more creamy-white, well-circumscribed lesions of the choroid and retina, often accompanied by inflammatory infiltrates in the vitreous. These lesions can be detected using an ophthalmoscope after dilating the pupils. Often, there is inflammation in the anterior chamber manifested by the presence of a hypopyon. Typical lesions of chorioretinitis are shown in Fig. Fig.2,2, left. Patients complain of eye pain and may have blurred vision or spots in their visual fields. Patients with endogenous endophthalmitis may have positive blood cultures antedating eye symptoms or signs. In the absence of a positive blood culture or characteristic clinical syndrome, aspiration of the vitreous (or biopsy) may be necessary to establish the causative microorganism. "
You should read the whole section for complete information. There you will read that one of the causes for Candida Yeast infection is the usage of broad spectrum antibiotics, which I assume you would have taken to treat your intestinal problem. After listening to your stomach and sinus issues, it almost appears that your eye problem is related to yeast infection, but one can not say this for sure, unless tests confirm this. As it is already mentioned in the quoted para, if lesions of choroid / retina are present and if blood cultures do not confirm, aspiration of the vitreous will be required for testing.
Thanks for all the information. My eyes are really sore just now so I can't read all the info you sent me but i've had a browse. My doctors are really slow to react. I need to phone them and ask for a biopsy of the eye.
Sorry to know that you are still struggling with the problem. I have copied the main para from the article to reduce the strain on your eyes, but I always hoped that you would take the help of someone else if you are problems in reading.I am sorry, there is nothing much I can do about it.
By the way, here is an article from one eye hospital in London, who do vitreous aspiration for diagnosing eye problems, in case, as you say, you do not have local hospitals who do detailed diagnosis, may be I thought this London hospital may be within your reach?.
All the best,