I' m havong a pretty full week...on Tuesday I saw my opthalmologist and she confirmed that the situation is 'stable' no new inflammation, no bleedings...but my sight has worsend. I' m not able to read the letters on the Snellen chart any more. I can only count fingers from 1 meter. That' s beacause of the macular fibrosis which is very extense.
Today in the morning I saw the rheumatologist. She confirmed the Behcet diagnosis who made the previous rheumy at the beginning of June. My blood tests are good, no signs that the disease is active. That' s good news. As always thanks to everybody for the precious and constant support!
Federica,
It saddens me that your vision is deteriorating which indicates a need for something systemic to stop this from continuing to rob you of sight.
have vascular tests been done? this stuff can sneek up on you with Behcet's disease.
I'm sorry that Behcet's has been found to be your underlying disease.
I am so sorry that you vision has gotten worse. We have the same situation with my husband. even though there is not any new inflammation, the meds are working, his vision keeps getting worse. So we share in your frustration.
Keep us up to date!
And Mike, you are amazing at how you are always there for people when they post!
thanks to both of you for sharing my feelings. Deb, I agree with you. The way Mike is always here where you need him it' s amazing. It' s a real gift. I' m sure about that. Deb, I share your feelings to. It must be really hard for you and your husband. Mike, pardon me, what vascular tests? I know ignorance it' s no excuse but...could you enlighten me, please?
I must say that yes, I hoped that it could not be Behcet but, in a way I' m almost 'relieved'. At least now I know what I' m fighting...Thanks for your prayers. It' s a precious help. And Gog knows if I need it.
Wishing both of you and your families the best of health,
sorry,what an idiot I am! You meant an angiography? I can' t do the one with fluorescein because I' m allergic to it. I almost had an anaphylactic reaction.I did an ICG procedure in March and it was 'good'. But you know, they' re not identical procedures...
Re: for Mike
I forgot that you are allergic to the Dye that is used for angiography. the OCT scans you get will keep track of any vascular changes in the eye. I'm not sure what you can have to check stuff elsewhere in your body as vasculitis occurs throught the body with behcet's disease. maybe Dr Stephanie can enlighten us.
that' s because my eye doc wants a new scan and a new fundus examination for the end of January. I can anticipate if necessary. She wants to monitor the situation very closely. I'm open to suggestion anyway. Thanks for your help and friendship. God bless you!. You will be in my prayers too.
Take good care,
Federica.
Ps. How' s your diabetes? And what about your eyes?
Re: for Mike
Thanks for you kindness!
my diabetes is being difficult to control. I am eating practically nothing yet my serum glucose is still out of whack. It may be that additional types of insulin will be required as I have an 18 year history. I'm losing additional weight as well because of the very low caloric intake I am undergoing to try to get this stuff licked.
my eyes are still doing very well other than some conjunctivitis I immediately after a shingles vaccination that I had a few weeks ago. I had orbital swell of the left eye as a consequence as well but both resolved in a couple of days without treatment.
Re: for Mike
Sorry you are having trouble with such a decline of useful vision. What is being planned for you? I wish you did not have to wait for so long to find out more. Is the systemic part of yur disease also flaring?
I know this disease is one of the hardest ones to manage, and hope your doctors find the "magic bullet" to stop it in its tracks, though i know it is difficult.
I am curious how long yu have been dealing with this?
Hang in there!
sorry to hear that you' re probably going to need more insulin. I know diabetes is a pretty nasty beast...the fact that you' re loosing weight will certainly help but I can imagine it' s a little bit hard. I' m glad instead that you' re eyes are quiet. I wish you they stay that way for ever!.
Thanks to you for everything.
The systemic part of my disease hasn' t flare. The latest blood tests and the physical examination are negative. But it' s true that I had arthralgias to my left ankle and right knee in June and July. The episodes have been successfully solved with etoricoxib. Three years ago I had posterior uveitis which has been misdiagnosed and probably mistreated as well. I' ve recently learned that it could not have been the first episode. I have scars also in the peripheral portion of my retina compatible with an inflammatory process. But I never was aware of them...let' s say the uveitis was only the tip of the iceberg. As I recall I always suffered from oral aphtosis and skin problems. I tested positive to HLA B51. The beast is quiet now and I' m very pleased that it is. The rheumatologist told me that if the situation gets worse we could use methotrexate, cyclosporine ecc...my eye is also quiet. The loss of central vision is due to the macular fibrosis which is really very exyense. Like I said a new OCT scan has been scheduled to the end of January and then a new fundus examination. I can anticipate if I notice something' s changing. Thanks for asking.
I have been away from the group a few days. I am so sorry to hear about your vision worsening. Did the Dr. recommend anything that can help?
Have they examined everything to see if anything can be done. Bob has had times his cornea was so severly dried he could not see, and times it was the macular edema, and times it was the gunk in the vitreous filled with gunk, and the first time he could not see the chart what when his glaucoma was discovered and the pressures got into the 40s and above bf er surgery.
I wish there was something someone could do. Any chance of coming over for a consult with Dr. Foster? I just feel so heartbroken to hear that you are not seeing the chart and the next followup is in JAN????
thanks for you kindness and sensitivity, they mean a lot to me. My sight has worsened because of the macular scar which is very extense. There' s nothing you can do about that. All the doctors I' ve been seeing latetly concur about that, even the uveitis specialist in Milan who has done part of her training with Dr. Foster.
On the other hand, the situation is 'stable'. The last OCT shows only a minor change in macular thickness (we' re talking about 4 or 5 microns) which is not serious. Sure the evolution will be checked and verified with the next scan.
My cornea is ok. My IOP is ok too. My vitreous is degenerating but it doesn' t bother me too much. We' re waiting for the PVD to complete, and the situation is strictly under control. I have no macular edema, no new flares, no bleedings. Thank God!. Just a lot of scars in the central and in the peripheral portion of my retina. That' s "all". The choice of doing the next check up in January I think is quite acceptable. Obviously I can go earlier if I notice something' s wrong. All I have to do is learn how to live with it. Honestly, I must admitt that work is in progress....Thanks a lot and Send Bob my regards.
It sounds like you have so much understanding of your eyes and what they are doing sounds like it is indeed all they can do, and I wish tho there could be more.
I have to also let you know that my nieces and friends got me to try facebook finally. It is a very boring facebook tho bc I don't have much time to use it or much interesting stuff to say. I actually have not figured out how it all works, but I did post a photo of Bob and myself and worte something. Will put up a photo of Buster our cat when I have time, and when I get the connection to the printer working again. I will put one up of our little Eddie kitten who we have had to let go to heaven, bc he is still a big part of our lives. That little kitten stole our hearts.
I will try to figure out how to get it all to work etc when I have time for my niece or my sister in law to give me some lessons.
my first and last name should bring up facebook if you want to connect sometime, just let me figure out how to use it so I can put something up there to read.
thanks again. Great, you' re on fb! Listen, I think it would be better if you try to find me instead. There are so many Betti Giles...more than 170...! Search for "Federica Brancolini" my picture is a black and white one. I wear glasses and you can barely seen the head of a cat. Waiting for you, I wish you and Bob the very best,
I will look for you tomorrow evening on fb. If you look again at bgs you might find me in baton rouge louisiana. probably not many with that Betti spelling bc it is an unusual spelling in this country, tho there are such things as Betti number in mathmatics.
Will get back to you tomorrow. I have overstayed my waking time and will soon turn into a pumpkin if I don't get sleep.
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