I see there are two other members in this group. Is there a way to contact each other? I'm newly diagnosed, less than a month, and am trying to gather information. I guess when my doctor said this was a rare disease...he meant it. Sigh.... Sue

Hi There Sue Am Steve, 28 year old UK. I have this week been told i have macular Telangiectasia. In January my consultant thought i have CSR and wanted to observe it before later telling me i have Cystoid Macular Oedema. He was unable to determine the actual cause of it - possibly thinking it was Branch Vein Occulusion. Either way i had an eye injection two weeks ago of Lucentis to help with the CME which seems to have worked slightly (i can see an additional line on chart taken me up to three lines in right eye). Following all types of tests he has only now been able to confirm what i have. Have you had the same problem? Seems Lucentis is the way forward but theres no treatment plan and everyone seems to be on their own until the MacTel trial is completed. You can drop me a line anytime on msn stemcc82@hotmail.com or yahoo: only_ste2001 Hope all is ok

Hi Steve, I am responding to your provided hotmail address. Please let me know if you do not receive my message. Otherwise we can continue to chat on here for the benefit of other members but up til now you are the only one to respond. Cheers and see you in email land. happy61girl@yahoo.com Sue a.k.a. Woody

Hey There I just seen your email :) reply on its way :)

Hi. I was diagnosed with MacTel about two years ago. I am not entirely confident in this diagnosis. I am only 34 years old and have my first vision problems when I was 19. I have numerous central scotomas (13 in my left eye and 4 in my right including a very large one) but my corrected vision (when I look "around" the scotomas) is 20/15 (usually -1 or -2 but still pretty good). I also believe I am gaining new scotomas and the present ones are enlarging at a rate much faster than that described in MacTel. I have very few findings by either OCT or angiogram (some right angle vessels, very few microaneurysms, ONE refractile crystal and some squaring off of the fovea). Could anyone please respond and comment on whether this sounds at all like what you have experienced? I've seen three very well respected retina specialists and am still at a loss of what to do next (aside from see more specialists). Any information you can provide would be most helpful. Thank you - Toast

Hello "Toast"... I know that Steve"stemcc82" is much younger than I am so you might both relate and share some commonalities. I'm 49 and don't know what to think. The original diagnosis was the IJT. Have had horrible issues with my insurance coverage and my being seen has been a chore. The last specialist I saw was in California, at Stanford University Eye Institue, and he was worthless. Long story but I left there and vowed to never go see him again. So, I'm a bit stuck right now without an eye specialist but I will say that my sight has been the same and I have not experienced any reduction in clarity. They still can't get a correction with eye glasses so that's a pain. But I make it through each day and am grateful for the sight I do have. Sorry I'm not much help in relating to your situation but I know for me that knowing there are others out there with the same type of issues is comforting. At this point I feel like it' my case has been a crap shoot. Last visit he wanted to start a series of injections in both eyes. Not at the point where I'm accepting of that therapy. Besides from what I understand it's a temporary fix so going through the risk of infection, stroke/heart attack and potential for detaching retins isn't worth it. Regards, Sue in Michigan

hey toast & sue - hope you are both well :) I have only been diagnosed with macular telangiectasia in january 2011. To date it has only affected my right eye. That said its been stressful!. At first i was told i had CSR (central serous retinopathy) and put on a course of steriods which did nothing. after two more private appointments i was told i had macular oedema but the cause was unknown. i was given more drops and more testing which included: ultrasound etc. Eventually around my 4-5th appointment within a month, i was told i had mactel. During this time my vision was getting worse nearly on a daily basis, i had alot of distortion and lost many lines on the chart within a short time. As nothing worked my consultant started me on lucentis injections. They worked great however only lasted max of 4 weeks. As my case was "unique" according to consultant, he would not follow up with other injections straightaway, so even though injections worked, i then had to watch it get worse again (around 4th week) then on 6th week i would have another. To date i have had four injections. Last month i also had laser photocoagulation, which to be honest was completely pointless, it did nothing at all. So this brings me up to date, had another appointment on saturday well the oedema is worse than ever before and now i can only read two lines on the chart, going to have another course of injections 4 weeks apart. We have NHS health service here which wouldnt cover this unless your consultant put it to the PCT to decide, fortunately i have private cover too, but even they are now dragging there heals as the injections etc are expensive. it seems to me from everyone i met with this, its more stressful trying to find answers than to treat it, everyones told contradictory things :(. Hope you are well tho :)

Thank you for sharing your experiences. Whereas a part of me feels a little better knowing others have had similar difficulties with diagnosis/treatment it really just frustrates me more. For all the vision problems that exist you would think the mechanisms for supporting and counseling those with eye disorders was above and beyond the average for medical specalities. This does not appear to be the case. Although, I have seen some retina specialists that couldn't do much for me but genuinely recognized my situation and concerns. It does sound like you both have significant acuity losses (I might have misread Sue's post though). This is more consistent with what I have read with Mactel. My corrected acuity is very good still but when new scotomas develop I seem to go from 20/15 to 20/INFINITY in a matter of days! And apparently my remaining vision is still "too good" to do anything invasive like VEGF inhibitor injections. I'm willing to try just about anything. Speaking of which, is anyone else doing any dietary changes? I know there isn't much evidence either way for Mactel but for other macular disorders there is some "reasonably" decent "evidence". I'm taking Vit E, Vit C, Lutein, Cu, Zn as well as Fish oil and Vit D. I eat a ton of spinach and leafy greens as well as stay way from red meat. I'm also taking aspirin. I admit this might be counter-intuitive but since I have no leakage currently I figure this might prevent blood from clotting up and creating aneurysms in those right angle and tortuous vessels. I can't say any of this is helping yet but it doesn't seem to be increasing the rate at which I am losing vision either. Anyone else do anything "over the counter" to try and slow the disease progression? It is interesting to hear steroids did nothing to help in your case stemcc82. Not that there is any evidence to suggest steroids helps Mactel but I've always wanted someone to give me a bunch of roids just to see if there was an inflammatory component to the disease pathogenesis. At this point I'd rather be immunocompromised than partially sighted. I'm kinda rambling at this point but knowing that someone may be reading and actually able to relate to what I'm saying is more therapeutic than I initially thought. Thanks - Toast

hey there great to hear from you and i too am pleased to know am not going mental and that others are in the same boat as me. it is frustrating however as you say - out of all the diseases of the eye - this is very unknown. My consultant always tells me am an unique case though it does nothing to help :) Today am home early from work - my insurance approved another injection (they have been a right pain!) so am off now down to get another lucentis injection. You should speak to your consultant regarding this, as its been the only thing that i seem to respond too albeit it only lasts a few weeks - but thats better than nothing. I changed my diet completely, to the point i lost alot of weight, started doing half marathons, 10k races etc and too eat alot of spinach - its done nothing with regards to slowing or speeding the situation however. I've been taking asprin daily as my consultant seems to think itll help - how i don't know - sometimes i leave my appointments confused (i should start righting things down more lol) My mactel causes macular oedema which unfortunately is right ontop of the fovea, so i notice almost immediately when the lucentis has stopped working. Ironically i ran an opticians for 5 years! so i know alot about the eye etc but this has kinda baffled me. Steriods, did make no difference for me however it doesnt mean it wont make difference for someone else, please speak with your consultant regarding them either orally or intravenously. I've been going back and forth now 9 months and its only at this point after around 40 appointments has my consultant got to the point where i have no further options other than lucentis etc. At the beginning it was take this tablets for a week or two it should work, then try these drops it should work and the whole time, lucentis was always told no its too dangerous, laser was the same - a no go area, then after every resource was used it was ok one injection, then another, then another, then ok lets give laser ago and now more lucentis. Its very confusing! i never know what he is going to tell me but am happy at least he has tried everything. i wish you all the best :) and ill let you know how injection goes (dont look the best walking through central london in rush hour with patch on haha)

I am so happy that we are communicating. As you both said, it's nice to know we aren't alone. It's funny that you mentioned dietary changes.... I was driving from California to Michigan. One of the days I got up a little late and hit the road before I had a chance to have any coffee. I travelled with food for breakfast and snacks but I had to rely on others for my caffiene fix. Anyway, I stopped and finally got a cup. Put in a teaspoon of sugar and touch of milk and on my way. Low and behold, about 30 to 40 minutes after drinking the coffee my vision began to blur. I was stunned. Eventually the blurriness wore off and I was back to normal (for me). Later that day I did the test again with my ice tea. A touch of sugar and milk and the same results occurred. Hmmmmmmm..... So, I have stopped drinking any thing with caffeine and sugar and I notice that I have much less bluriness than before. My personal thought is that it's not so much the substance as it's what it does to me. My heart races, blood flows and my eye blur up. Anyway, there is some food for thought. The recent visit(s) I had in California were a waste of time. My plan now is to stay away from caffiene and such and then get an eye exam. Yep, I want to go to a plain old opthamalogist and not even tell him what I've been told. I want to see what this new doctors conclusion will be. If he notices the same thing then I know I'm on the right path...even though that path is pretty fuzzy (pardon the pun). I'm just thinking the way things have been handled previously I don't even know who I can trust. At least getting a whole different perspective may be very helpful. That's it for now. Life is good and I'm grateful forbut am what vision I have at this point. I pray that it won't deteriorate more, or at least rapidly, but I'm aware of the potential and I have to accept that. Cheers! And thank you both for interacting. Sue

hey sue! hope your well :) Yeah you are the first two people ive met with this so am excited te hear others perspectives because up until i met you - i had no idea whether my reactions were either good or bad. my consultant was convinced i was diabetic, i showed all the signs of being diabetic through my eyes (diabetic macular odema etc) but i was no diabetic, to the point he asked me to half a sugar fast test twice! Its safe to say am not diabetic now :) One thing this disease causes is just pure stress of not knowing whats around the corner. At first i thought it was nothing serious, but now i realise how quick it is to react to the changes and consult my consultant asap. I've just had my injection this evening and its slightly painful at the moment but i can live with it :) i just hate the feeling after the injection, the pain is very intense for about 10 mins and i cant see out of the eye for about 15. Now i have this wee black ball of liquid floating around inside which takes up a chunk of my vision :) its just the injection and usually disappears within 3-4days :). I would really love to know what causes this, drinking? smoking? excess exercise? bad diet? who knows but i know ive tackled each one for a period of time and nothing changed. I was a bit disappointed the laser treatment did not work too :( I updated the mactel on wikipedia - it only ever had three sentences, now its like a book, haha everytime i find something new i add it. For me, caffeine etc has been fine, i dont tend to get a kick out of it as i probably that used now to drinking it tho its very interesting what you say cos its true. Have either of you had any treatment yet?

Hello, I'm not sure if anyone is still monitoring this thread. The doctors believe that my wife has IJT. It all started about six months ago during a routine eye exam. She was sent to a retina specialist here in town. After the initial visit, the doctor was uncertain about his diagnosis. He thought it could be IJT or macular dystrophy (or possible both). The tests showed her right eye had some pooling. At this time the best corrected vision they could get for her was 20/40 in her left eye and 20/60 in her right eye. In order to confirm his findings, this Dr, sent us to another retina specialist in town. He somewhat confirmed that it was IJT. At this point we were getting pretty frustrated. The Dr's seemed to show little urgency or certainty with my wife's condition. We were sent back to the original dr with the suggestion to start Avastin injections to address the pooling. Last month my wife had her first injection, She saw no improvement in vision, but for a few days, she said things were a little brighter. We had the follow up visit yesterday. The pooling is gone. But there is no improvement in her vision. Actually the vision in her right eye has gotten worse. (20.100) The dr. explained that he had no more suggestions. Since the injection corrected the pooling problem, but didn't correct her vision, he felt there was nothing more he could do. He did state that one study showed that a patients vision approved approx a month after the initial injection. But, he was less than optimistic. As a final option, we are going to The University of Iowa. The doctor says they are in the top 5 facilities in the country when it comes to opthamology. Its been a long and painful 6 months. All while the doctors seem to show little knowledge and even less compassion for a person that has been diagnosed with a life altering disease. As we discussed our options last night, my wife and I agreed that the doctor seems to be more concerned with the money making process of his business through laser surgeries and macular degeneration injections for senior citizens. Sorry for the ranting. But we feel like every road has been a dead end. And the person giving us directions doesn't care what road we are taking. Hopefully, our trip to Iowa U, will bring more answers than questions.

Hi there....I still check in this site because I too am looking for answers. First, let me say that your frustration is about the same as everyone else here. Not that it helps but at least you aren't the only one(s) getting no answers. Please post back to let us all know about Iowa U and the results. Since I'm on the brink of losing my health insurance, until I find work, I'm not sure what my next step will be. I want to get my eyes retested here in MI to see if they come up with the same diagnosis. Then I plan on being back in CA in Jan/Feb so I will follow up there to get retested and try a new docotr. The last idiot was just that....an idiot. I wish I had more uplifting news for you and your wife. My personal email is happy61girl@yahoo.com . If either of you would like to chat more you are welcome to contact me there. Please puts the word "EYES" in the subject line so I can catch it if my spam folder interceeds. Cheers, hang in there, and collectivly we may all come up with a solution. Sue

Hi Sue, Thanks for the response. I will keep your email in mind if I have something personal to discuss. Until then, I would like to post as much info here. Hopefully other people with this condition will find their way here. Yesterday we made the decision NOT to wait another month to schedule our visit to U of Iowa. We called and made an appointment for 2 weeks from yesterday. Ultimately we decided that my wife's right eye has progressed from 20/60 in July/Aug to 20/100 and if we wait too long then there may not be any chance if her left eye begins to deteriorate. With the laws in our state, once her left eye becomes worse than 20/60 she is no longer allowed to drive. Which means she loses her job and our health insurance. So, we decided we need to be as aggressive as possible while we can. I have some questions for anyone else that has been diagnosed with IJT. Did your Drs ever say it could be Macular Dystrophy? What was the your vision when you were first diagnosed? How quickly did it deteriorate? Did it effect both eyes? Of course the Drs can't tell us anything about the progression of the disease. All they can tell us is that the pictures and the angiogram show the same condition in both eyes. Yet, the right eye is losing visual equity much faster. Glad I found this site. At least we don't feel all alone in this.

I absolutely understand keeping the messages on this forum so that othrs can benefit. I was just being a female really reaching out to another female... This stuff is frightening, and the ambiguity isn't helping at all. As is true for everyone here...if you want to vent, cry, laugh or scream you are all welcome to contact me personally, at any time. I'm glad you are moving up the appointment. What I find so maddening is the lack of urgency on my doctor's part(s). Good Lord...he's not losing his sight! Are you kidding me? I will keep your wife in my thoughts and prayers.... Sue

Yeah, the doctors response is less than comforting. Towards the end of the appointment the other day I asked her doctor if he was married, and what would he tell HIS wife to do. He replied he is married and that he would send her to U of Iowa. Her doctor is a nice enough guy. I just get the feeling that he doesn't see a point in wasting time with her condition. Maybe he doesn't tell a lot of people that they are going to lose their eyesight. We also wondered why the doctors haven't offered any avenues for counciling either. You would think with such a life altering prognosis, that you would benefit from a grief counselor.

You hit that on the head....I have truly been grieving this whole process. The unknown is horrible..... Stay in touch.

hey folks hope yer all good :) sorry to hear theres yet another person out there being completely frustrated by IJT. I am 29 and have had this for nearly a year in my RE. At first they thought it was to do with stress and whatnot but after weeks and weeks they diagnosed IJT, problem being am the first person my consultant has seen with this in 25 years I was lucky to have private insurance here in UK so i was able to see the right people quickly. They tried a few eye drops for a few weeks which did nothing, then tablets again northing. At worst my VA was 6/120. So this brings me to Lucentis, my consultant told me that one injection may stop it but no-body really knows as there is still an ongoing trial in the states (mactel) One injection turned into two, then three. I have now had 8 injections this year and although it improves my vision it only does so for two weeks and each time i seem to have an injection it improves quicker but also gets worse quicker. In between i had laser treatment which did nothing at all. I have had every test you can think of this year. (inc 5 diabetic screenings) This brings me to now, i had an injection almost 4 weeks ago, apparently that was the last as no long term benefit was gained this year....so am now in limbo, vision getting worse and my consultant not exactly reacting quick enough, so am having a 2nd opinion. I worry because of my age and having this problem already; i dunno if my other eye will have same. I do wish someone knew even just something about treatments as it seems all consultants havent a clue. This is why rareshare is great, because we are all practically in the same boat, with the same issues. I will keep you all posted should my referral show any new treatments (main eye hospital here in uk) Good luck everyone

Hi everyone, We had our visit with the Dr's at Univ of Iowa yesterday. They have a nice facility there and the staff was very friendly and helpful. My wife had a full workup done again. Her original Dr sent her files to U of I, but never contacted the Dr's over there, even though he stated that he would call or email. After all of the pictures, 3 separate Dr's confirmed that it is IJT. The pictures they showed me were of much higher resolution than we had seen before, We could see the blood vessels make the right angle path. The Dr didn't give an exact number, but he stated that they see more IJT patients than most other Dr's since they receive many referrals. He also stated that they do not recommend Avastin injections for IJT. He stated that they have seen very little, if no effects by their patients in response to the injections. He felt that the risk of infection was not worth the small percentage chance of it helping someone. He stated that laser surgery is a "no, no" with this condition (his words) He said that the laser could cause worsening conditions and has shown no effects in correcting the problems. So, his solution was a pill? He put her on Methazolamide tablets for 90 days, At which time we have a return appointment. One of the professors/Drs did a study of 9 patients over a 9 year period with mixed results. Her Dr yesterday, felt there was a 70% chance this could help her visual acuity. I am skeptically optimistic. I was able to find a summary of the study HERE:http://webeye.ophth.uiowa.edu/research-day/item/273 Hopefully they have seenr success from patients not included in this study. By my calculations the 9 patients that did nothing had a 56% chance of their VA worsening. By comparison the pills/drops corrected the Cystoid problems. Unfortunately, that correction only improved VA in 29%. (1 with drops and 1 on pills) The exact same 29% had no change in VA and 43% had a gradual decrease of VA. So, I am not sure where the 70% optimism by the Dr factors in to this. Maybe he is just trying to keep our hopes up. One other positive note, my wife can finally go back in and get new glasses. Tests yesterday showed that some of the loss of VA over the past 6 months can be corrected with a new glasses prescription. She was still at 20/50 left eye and 20/100 right eye yesterday. They think she should be able to get those down to 20/40 and 20/70 respectively. So, it will make things seem better. So, what does this all mean. I'm not sure. The staff was very helpful, the Dr's were knowledgeable and were able to explain everything. We are still left in limbo. I am skeptical of the pills, but hopeful. Has anyone tried these pills (Methazolamide) or the drops (can't recall the name) with any success? Hope everyone is well and has a great holiday

Just wanted to give an update. My wife was finally able to get a new pair of glasses the other day. She returned to the original Dr that discovered the IJT. He was able to correct her right eye to 20/50 and her left eye to 20/30. There was a delay in getting the glasses (about 2 weeks) but she has had them for a few days now and while she notices an improvement from her old RX, she says there is still the problem of delayed focusing. Sometimes it can take 20-30 seconds for her eyes to focus on an object. So, as of now, we are just waiting. She is going to take the pills for 3-6 months to see if it improves or stabilizes. We have another appointment in March. I will update if anything changes. Best Wishes to everyone.

hey there cheers for the update - hope everything goes well :) I am waiting for my second opinion now so bit of luck within the next week or so. My vision in re prob the worst its ever been now but am still optimistic :) Will keep you posted.

Hope everyone is doing well. Just want to give an update. We had another visit with the Dr at U of I yesterday. Based on the photos that they took, nothing has changed. Originally, he said that her eyes had improved. When we last visited in December her vision was 20/50 in the left eye and 20/100 in her right eye. He forgot that he recommended she get a new pair of glasses. Her new glasses brought her back to 20/30 in her left eye and 20/50 in her right eye. Yesterdays vision test now shows her left eye is 20/40 and 20/60 in her right eye. When we explained this to the doctor, he changed his opinion and now thinks her eyes have either stayed the same or worsened a little bit. He also admitted that the medication she is taking is kind of an experiment. They can't say for certain that it will do anything. There just isn't enough research. So, now we are stuck with the waiting game. 3 more months until another checkup. At that time, we should know if her eyes are truly getting worse by about 10 points per eye, every 90 days. It still amazes me how little they know about this disease, and how little effort is put towards it. I guess, there just are not enough people effected by this disease for anyone to take notice.

Hey there Gla to hear its a little bit stable! I've stopped my treatment since December and had my 2nd opinion which was a waste of time! Even the best doctors in the land can't agree or give u a plan etc. I've noticed in past 3 months my vision has not stopped but drastically reduced to the point I can't make out shapes etx when I close my good eye and look through tr one affected I get the sea sick feeling so I'll be booking back with my consultant and wishing to continue treatment. I have exhausted every avenue an get completely annoyed no one can give me 1) treatment plan 2) answers to my questions which in my opinion are simple questions I hope u all having better luck than I am :)

Hi Steve, Sorry to hear your one eye has gotten so bad. Hopefully, they can do something to help restore things. As it stands now, my wife's eye's are just good enough that she can keep working. We are concerned that her next visit may push her past the limit and she will be forced to go on disability. We just have to wait and see. One question I forgot to ask the Dr. If her eyes were to get better, would her current glasses actually make the results of her vision test worse? Simply put, if she was 20/30 in her left eye when she got new glasses in Dec. and now the medicine improved, could she need new glasses to bring her back to 20/30? I suggested to my wife that she pay for another eye exam with her original optometrist. Perhaps new RX would keep her under the 20/40 requirement so she can keep working. It's been tough on both of us with the uncertainty. Luckily, we had already spent the last 4 years paying off every bill. This was in preparation for me to go back to school and get a degree. Now, after a year of school, it looks like I may have to drop out again in order to find a job to cover what disability won't We also have the concerns of health insurance. Not just for my wife, but we have a 15 year old daughter that has diabetes. The supplies and checkups could bankrupt us without the assistance of health insurance. Things are pretty depressing right now. Hopefully, someone will report some good news one of these days. Keep Hope Alive.

Hey there Sorry to hear things not too good for u all. I know the answer to ur ex question (run several depts inc opticians) I asked one of the optoms this question and they told me the Mactel won't change the rx at the front of the eye seeing as condition is at back so ur wife shouldn't need to keep changing her glasses. I myself have stopped wearing my glasses tho as they make me diZzy now. I hope u get the answers and assistance u are needing and here's hoping ur wifes vision improves :)

Just wanted to chime in with a little good news. My wife returned to her optometrist today. (the Dr that first discovered her MacTel last year during a routine eye exam) We wanted to get a better idea if her visual acuity had actually gotten worse since she got her new glasses in December. In my previous post, I mentioned the her last visit at the U of I, left us a little skeptical about how they determined her VA. (they are more concerned about taking photos and such) Anyway, the Dr today was very understanding. After about 20 minutes he was confident that her left eye is still at 20/30 and her right eye is maybe a little better than it was last time 20/50+2. He checked her prescription to see if he could do any more, but he didn't see a need at this time. He also didn't charge us, even though I was prepared to pay the Eye Exam fee. I know, to most people it won't seem like much. But, we had been pretty bummed after her checkup last month. Not sure if it has just leveled off on its own, or if the meds are helping. But, every day that it doesn't get any worse, is a great day in our book.

Wanted to keep anyone that is following this thread up to date. My wife had another visit with the Dr's at U of Iowa today. Her eyes have stabilized and are where they were (and maybe a little better) during her last visit. The Dr saw some improvement in her images, a few of the small areas of pooling that were still there have cleared up. The only concern since her last visit is the problem she had with a large kidney stone about 6 weeks ago. The Dr's are a little concerned that the kidney stones could be a side effect of her medication. He is going to confer with some other Dr's and let us know. The Dr's are fairly confident with her treatment. So much so, that we don't have another appointment until next March.. (unless she notices a problem) I hope everyone else is doing well.

Does anyone visit this site? Looking for info on  Idiopathic Juxtafoveal Telangiectasia

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It doesn't appear that way ...  at least currently.  

 

Anyone else out here?????   :^)