Aa
Two weeks on Restasis and already seeing improvement in swelling of eyelids!
I have been on Restsis eye drops for about two weeks and I am already seeing some changes for the good! I have had Severe dry eye, blepharitis and Meibomian gland dysfunction ever since I had the acute attack in 2006. The Meibomian glands secrete an oil that is essential to the tear film, and they get clogged and stop working correctly. Blepharitis is inflamation of the eyelids. They both are very painful conditions that I have been trying to get under control for two years now!
Finally my optho, after seeing that I was having to use too much of the artificial tears to control the symptoms,decided to put me on Restasis. I am already seeing the swelling going down in the eyelash margins of both eyes. Looks kind of like poison Ivy when it starts to dry up some.
Also I am seeing more liquid in my eyes, not a lot, but some! And so far I have not had any of the painful attacks with my eyes thumping out of my head from the clogged glands and swelling. At the start I had constant pain every day with this and the artificial tears and warm compress and soaks treatment had gotten it down to about two or three times a week I would have pain. I have not had any pain since I started the Restasis!
I don't know what it is doing but I hope it keeps on doing it! Eye Pain Stinks!!!!!! I just got through reading an article on Restasis and it's use in other conditions of the eye besides dry eye. And guess what? Meibomian gland dysfunction and blepharitis are two of the conditions that opthomologist have started to treat with Restasis. It has shown to be effective in this disorder and others too.
It said that it prevents T-cell activation and that it is safer than steriods with less side effects! They have done some studies on it's use in Meibomian Gland Dysfunction and other occular conditions. I know it is probally too early to tell exactly how much this will help my condition, but I am hopeful that it will stop the horrible eye pain and swelling that I have suffered with for two years.
I will update on this after some more time has passed and I can see more results!
~Santana~
Finally my optho, after seeing that I was having to use too much of the artificial tears to control the symptoms,decided to put me on Restasis. I am already seeing the swelling going down in the eyelash margins of both eyes. Looks kind of like poison Ivy when it starts to dry up some.
Also I am seeing more liquid in my eyes, not a lot, but some! And so far I have not had any of the painful attacks with my eyes thumping out of my head from the clogged glands and swelling. At the start I had constant pain every day with this and the artificial tears and warm compress and soaks treatment had gotten it down to about two or three times a week I would have pain. I have not had any pain since I started the Restasis!
I don't know what it is doing but I hope it keeps on doing it! Eye Pain Stinks!!!!!! I just got through reading an article on Restasis and it's use in other conditions of the eye besides dry eye. And guess what? Meibomian gland dysfunction and blepharitis are two of the conditions that opthomologist have started to treat with Restasis. It has shown to be effective in this disorder and others too.
It said that it prevents T-cell activation and that it is safer than steriods with less side effects! They have done some studies on it's use in Meibomian Gland Dysfunction and other occular conditions. I know it is probally too early to tell exactly how much this will help my condition, but I am hopeful that it will stop the horrible eye pain and swelling that I have suffered with for two years.
I will update on this after some more time has passed and I can see more results!
~Santana~
The Rheumy did do the two antibodies you mentioned above to check for Sjogren's, but she did not say anything about testing the RA factor! Is this a separate test from the other two? If it has not been done, should it be done as well as the lip biopsy to look for Sjogren's?
~Santana~
~Santana~
Congratulations on getting some relief from the Restasis. Beings that Restasis is a cytotoxic (cell-killing) chemotherapy agent, I would think that this strengthens the case for having Sjogrens Syndrome. I think I explained it before but I''ll go through it again.
Sjogrens Syndrome is usually diagnosed by finding the RA Factor positive (90%) and two more specific antibodies Anti-SSA/Ro and Anti-SSB/La. The SSA/Ro is more specific for Sjogrens and the SSB/La is also present in other autoimmune diseases. When these antibodies are found, along with dry eye and dry mouth, it is usually enough to make the diagnosis of Sjogrens. This is called "Sero-Positive SS" because the "serum" was positive for the antibodies.
However, SS can still be there even if the antibodies are negative in the serum. This form is called "Sero-Negative SS." In this case, along with dry eyes and dry mouth, they do a lip or salivary gland biopsy to document that the glands are infiltrated with lymphocytes (a type of white cell which is important in the immune system).
Are SS and MS associated? You bet your Sweet Bippy they are! In some studies the risk of having SS when you have MS is as much as 16 times the risk of the general population!!! That's a whole lot folks!! Some studies only put the risk at 3 times higher, but it is higher in all studies!
So, I would think, but am not certain, that if you have Sjogren's Syndrome, then it would be more likely that you have MS (as opposed to ADEM). I suspect the number of people with ADEM are so small that meaningful statistics in the opposite way are not avilable. By this I mean that there are probably not statistics on the risk of MS in someone with SS.
This was interesting for me to find out.
Quix
Sjogrens Syndrome is usually diagnosed by finding the RA Factor positive (90%) and two more specific antibodies Anti-SSA/Ro and Anti-SSB/La. The SSA/Ro is more specific for Sjogrens and the SSB/La is also present in other autoimmune diseases. When these antibodies are found, along with dry eye and dry mouth, it is usually enough to make the diagnosis of Sjogrens. This is called "Sero-Positive SS" because the "serum" was positive for the antibodies.
However, SS can still be there even if the antibodies are negative in the serum. This form is called "Sero-Negative SS." In this case, along with dry eyes and dry mouth, they do a lip or salivary gland biopsy to document that the glands are infiltrated with lymphocytes (a type of white cell which is important in the immune system).
Are SS and MS associated? You bet your Sweet Bippy they are! In some studies the risk of having SS when you have MS is as much as 16 times the risk of the general population!!! That's a whole lot folks!! Some studies only put the risk at 3 times higher, but it is higher in all studies!
So, I would think, but am not certain, that if you have Sjogren's Syndrome, then it would be more likely that you have MS (as opposed to ADEM). I suspect the number of people with ADEM are so small that meaningful statistics in the opposite way are not avilable. By this I mean that there are probably not statistics on the risk of MS in someone with SS.
This was interesting for me to find out.
Quix
I have a blood clot in my leg. It just developed out of nowhere. I was put in the hospital and then a couple of weeks later my blood got too thin and then had many problems develop from that including the removal of my ovary due to a blood cyst. The weird thing about it was the blood clot grew.
Now it runs from my hip to my knee and the doctors decided to remove it because of the swelling and they fear that my blood supply would be totally cut off if the blood clot goes any higher. They put a filter in my Vena Cava so a clot won't hit my lung or my heart so now I'm good to go.
They supposedly tested me for factor 5 Leiden but they couldn't find the results. The vascular surgeon believes that my results could be tainted anyways. I guess you can get a false negative for the test if you already have a clot or if you are on blood thinners at the time you are tested. Which I did.
My mother, who has had mutiple episodes of blood clots, but she isn't currently on anything for it but a baby aspirin, said she will go in and get tested for it. The vascular surgeon said she would be the best person for the job right now. She had the same problem. Unexplained blood clots. The only explanation she did somewhat receive is it could have been cause from the Sjogrens.
Thanks for prayers and well wishes!
Take Care :) I'll write back tomorrow, if I'm up to it and tell you how things went.
Now it runs from my hip to my knee and the doctors decided to remove it because of the swelling and they fear that my blood supply would be totally cut off if the blood clot goes any higher. They put a filter in my Vena Cava so a clot won't hit my lung or my heart so now I'm good to go.
They supposedly tested me for factor 5 Leiden but they couldn't find the results. The vascular surgeon believes that my results could be tainted anyways. I guess you can get a false negative for the test if you already have a clot or if you are on blood thinners at the time you are tested. Which I did.
My mother, who has had mutiple episodes of blood clots, but she isn't currently on anything for it but a baby aspirin, said she will go in and get tested for it. The vascular surgeon said she would be the best person for the job right now. She had the same problem. Unexplained blood clots. The only explanation she did somewhat receive is it could have been cause from the Sjogrens.
Thanks for prayers and well wishes!
Take Care :) I'll write back tomorrow, if I'm up to it and tell you how things went.
Ok, I tried this first one, and it made me kind of dizzy! I definately have a lot of trouble holding my gaze while moving my head back and forth to the left and right. In fact I just figured out that I cannot hold my gaze on any one letter at all with my gaze involuntarily shifting around. And just to think I used to be champion at staring contest with my sisters! Iol!!
But seriously, If I try to keep my focus on one letter or one object I can feel not my eyes but my brain searching across the field of vision as if it has lost something somewhere! It is like ok, I am right on the letter with my eyes, and instantly I can actually see and feel my eyes brain whatever is moving, swaying away from the target! How wierd that I have never noticed that this is why I cannot hold my gaze stable. It feels really wierd to feel it swaying kind of like being on an ocean in a small boat and the wind is pulling you sideways and you have no stability or control over which way it goes!
I hope that this vision therapy can help me, I seem pretty messed up here!
~Santana~
But seriously, If I try to keep my focus on one letter or one object I can feel not my eyes but my brain searching across the field of vision as if it has lost something somewhere! It is like ok, I am right on the letter with my eyes, and instantly I can actually see and feel my eyes brain whatever is moving, swaying away from the target! How wierd that I have never noticed that this is why I cannot hold my gaze stable. It feels really wierd to feel it swaying kind of like being on an ocean in a small boat and the wind is pulling you sideways and you have no stability or control over which way it goes!
I hope that this vision therapy can help me, I seem pretty messed up here!
~Santana~
My ENT ordered Vestibular Rehabilitation Therapy (VRT) and it was the Physical Therapist specialized in VRT which showed me the exercises.
These are a few of tracking exercises that I do. Since I have dizziness (and not a visual field defect), I don't know if you will do these type of tracking exercises or not. Like your visual dysfunction, exercises are the only thing that will help with my vestibular weakness.
Gaze Stabilization exercise is where I look at a business card mounted at eye level and turn my head left-to-right while maintaining focus on a letter on the card. I cannot maintain focus while gazing left and right as well as a "normal" person, so this helps re-train the brain.
Another similar exercise is mounting a word search puzzle at eye level and walking back and forth toward the puzzle while looking for specific words (this one affects my dizziness the most). Your eyes are track both up-and-down and left-and-right with this exercise.
I've also walked down a hallway at the PT's office throwing a ball from left to right while focusing on the ball. It's fun to walk into walls!!! ;-)
Like I mentioned, these are exercises for vestibular issues, but they are retraining my brain in tracking objects, so I don't know whether these would pertain in your situation or not.
HTH and good luck! Pat :)
These are a few of tracking exercises that I do. Since I have dizziness (and not a visual field defect), I don't know if you will do these type of tracking exercises or not. Like your visual dysfunction, exercises are the only thing that will help with my vestibular weakness.
Gaze Stabilization exercise is where I look at a business card mounted at eye level and turn my head left-to-right while maintaining focus on a letter on the card. I cannot maintain focus while gazing left and right as well as a "normal" person, so this helps re-train the brain.
Another similar exercise is mounting a word search puzzle at eye level and walking back and forth toward the puzzle while looking for specific words (this one affects my dizziness the most). Your eyes are track both up-and-down and left-and-right with this exercise.
I've also walked down a hallway at the PT's office throwing a ball from left to right while focusing on the ball. It's fun to walk into walls!!! ;-)
Like I mentioned, these are exercises for vestibular issues, but they are retraining my brain in tracking objects, so I don't know whether these would pertain in your situation or not.
HTH and good luck! Pat :)
Pat
What do you do in the vision tracking exercises? Which doctor showed you this?
Slightly, Where do you have a blood clot? Do you have any blood clotting disorders? I was dx with a slight mutation of the Factor V Leiden gene a few months back. So far I have never had a clot, and the hematologist only put me on one baby asprin a day and said I didn't need to come back unless I had problems!
I had the clotting disorders checked out to try to rule out stroke! My neuro, after he got the report from the hematologist about the Factor V being possitive said that He still thinks my lesions are not from a stroke. I asked then what do they look like they are from. He said they look like ADEM. I wish I knew how they know the difference in all the different lesions and thier appearance, sure would make life a little easier on our poor worn out minds, what we have left of them anyway,lol!!!!
Good luck on your surgery tomarrow, I will say a prayer for you that everything will go smoothly!
~Santana~
What do you do in the vision tracking exercises? Which doctor showed you this?
Slightly, Where do you have a blood clot? Do you have any blood clotting disorders? I was dx with a slight mutation of the Factor V Leiden gene a few months back. So far I have never had a clot, and the hematologist only put me on one baby asprin a day and said I didn't need to come back unless I had problems!
I had the clotting disorders checked out to try to rule out stroke! My neuro, after he got the report from the hematologist about the Factor V being possitive said that He still thinks my lesions are not from a stroke. I asked then what do they look like they are from. He said they look like ADEM. I wish I knew how they know the difference in all the different lesions and thier appearance, sure would make life a little easier on our poor worn out minds, what we have left of them anyway,lol!!!!
Good luck on your surgery tomarrow, I will say a prayer for you that everything will go smoothly!
~Santana~
I had a lip biopsy back in the late 90s. It's not that bad. You'll have a numb spot in your lip line after the procedure...but over time it goes away for the most part. My mother's test back then, only showed she had Sjogrens after the lip biopsy. All her blood work was normal. My lip biopsy show chronic inflammation and lymphocyte infiltration but I didn't have enough lymphocyte infiltration to put me over the limit as Sjogrens.
I'm doing OK right now. I have surgery tomorrow for the blood clot removal. It's outpatient so hopefully I'll be pretty good tomorrow. I know what you mean about doctor appointments. I just seen my vascular surgeon last week, I have an appointment with a new neuro this July, and I have an appointment with a internist, and another appointment with my GYN. Plus I get a blood draw every week. WHEW! LOL Too many doctors. I feel like I'm playing the game.."How many doctors does it take to get a DX?"
What do you think? I think a lot of us play this game on the forum and it stinks. Would not recommend it LOL!
Take Care
Hugs
I'm doing OK right now. I have surgery tomorrow for the blood clot removal. It's outpatient so hopefully I'll be pretty good tomorrow. I know what you mean about doctor appointments. I just seen my vascular surgeon last week, I have an appointment with a new neuro this July, and I have an appointment with a internist, and another appointment with my GYN. Plus I get a blood draw every week. WHEW! LOL Too many doctors. I feel like I'm playing the game.."How many doctors does it take to get a DX?"
What do you think? I think a lot of us play this game on the forum and it stinks. Would not recommend it LOL!
Take Care
Hugs
Sorry the neuro-ophth didn't work out for you.... Grrrrr! How frustrating a visit! Especially since it took you so much time to get there!!
I think your plan of staying with the specialist and the reg ophtho is a good one. I hope that therapy helps you gain that 25% back. I do vision tracking exercises and it does help my dizziness.
Yeah, I get everyone confused. There are a few of you who's userid's either start with an "S" or have an "8" or both. This board is getting big ~ I can't keep us with who's who.
I believe you and I are in similar boats. My recent brain MRI over a year after the initial one is stable. No additional symptoms, and normal other tests/exams. So, still livin' in limbo.
Take care and tell Seth's older bros that I said to "Knock off the teasing!!!". (LOL ~ like they'll listen to me... My kid's don't listen to me, so I wouldn't expect anyone else's to. LOL :-) ).
Pat :-)
I think your plan of staying with the specialist and the reg ophtho is a good one. I hope that therapy helps you gain that 25% back. I do vision tracking exercises and it does help my dizziness.
Yeah, I get everyone confused. There are a few of you who's userid's either start with an "S" or have an "8" or both. This board is getting big ~ I can't keep us with who's who.
I believe you and I are in similar boats. My recent brain MRI over a year after the initial one is stable. No additional symptoms, and normal other tests/exams. So, still livin' in limbo.
Take care and tell Seth's older bros that I said to "Knock off the teasing!!!". (LOL ~ like they'll listen to me... My kid's don't listen to me, so I wouldn't expect anyone else's to. LOL :-) ).
Pat :-)
The specialist is a low vision specialist. He says I don't have low vision, but seems to understand what the problems are from the brain and even identified the side gaze double vision I have been telling my regular optho about for a year and a half. I did see a neuro- optho and the trip was five hours away! He was a total waste of my time and effort!
I was in his office maybe 15 min and he explained nothing about what is suposed to be his expertise vision loss from brain related causes. He didn't do any other test that my reg optho done!
I am sticking with my reg optho and this low vision specialist and I am going to try the vision therapy as my optho and Low vison doctor have both told me this is the only treatment for what I have. And hopefully the good old natural healing process will keep continuing to improve the damage. I am about 75% back to normal. Who knows the vision therapy may just fix the other 25%! I am keeping my fingers crossed!
Would you care to update me on your casee a little, Memory is not good sometimes!
And Seth is kind of liking having new glasses, but is glad he doesn't have to wear them all of the time! Now if I can keep his big brothers mouth shut about them and not let them tease him, he will be fine with it I am sure!
~Santana~
I was in his office maybe 15 min and he explained nothing about what is suposed to be his expertise vision loss from brain related causes. He didn't do any other test that my reg optho done!
I am sticking with my reg optho and this low vision specialist and I am going to try the vision therapy as my optho and Low vison doctor have both told me this is the only treatment for what I have. And hopefully the good old natural healing process will keep continuing to improve the damage. I am about 75% back to normal. Who knows the vision therapy may just fix the other 25%! I am keeping my fingers crossed!
Would you care to update me on your casee a little, Memory is not good sometimes!
And Seth is kind of liking having new glasses, but is glad he doesn't have to wear them all of the time! Now if I can keep his big brothers mouth shut about them and not let them tease him, he will be fine with it I am sure!
~Santana~
I'm glad you found a specialist that will do more thorough tests! Is he a neuro-ophthalmologist? I wonder if you'll be doing any of the same exercises I have for my vestibular weakness/dizziness. Curious to find out.
I love the name "Seth"! That is my youngest son's middle name!!! :-) First name is "Wyatt. We had to follow a naming convention..... long story... :)
Good idea to have your boys checked. Between DH, who basically can't see a thing without glasses, and me being farsighted and an astigmatism, we made sure our 3 oldest have been checked (youngest is almost 4). My 16 yo DS is nearsighted like dad, 9 yo DD is farsighted like me and the 11 yo DD has perfect vision. I had perfect vision when I was 11 yo too, so I suspect she'll need glasses at some point. She has genetics working against her.
I hope the glasses work out for your DS. Is he happy about getting them???
Take care! Pat :)
I love the name "Seth"! That is my youngest son's middle name!!! :-) First name is "Wyatt. We had to follow a naming convention..... long story... :)
Good idea to have your boys checked. Between DH, who basically can't see a thing without glasses, and me being farsighted and an astigmatism, we made sure our 3 oldest have been checked (youngest is almost 4). My 16 yo DS is nearsighted like dad, 9 yo DD is farsighted like me and the 11 yo DD has perfect vision. I had perfect vision when I was 11 yo too, so I suspect she'll need glasses at some point. She has genetics working against her.
I hope the glasses work out for your DS. Is he happy about getting them???
Take care! Pat :)
I will let you know what they do in the vision therapy and how it goes! I have been to a lot of optho's through out this whole thing and the low vision specialist seems to have a better understanding of my problems with the spacial , tracking, fixation, visual disorientation, side gaze diplopia, and the visual field defect.
He done different test than any of the opthomologist have done and seemed to have seen dysfunction like mine, from the brain not the eyes before! All of the optho's treat the eyes but are kind of clueless about the brains role in things!
I hear you on the appointments! Today I had to take all three boys in for a vision check. They had never had one except for the ones at school. After all of my vision problems and all that I have learned can go wrong with vision I didn't want to take a chance with thier vision. The two oldest checked out fine, but my youngest, Seth who is 7 had a slight stigmatism that I didn't know he had. He got some glasses to wear only when doing school work or reading. He likes to draw and I had noticed him leaning in on the table putting his head close to his work. He makes straight A's so this was my only warning that something was wrong with his vision.
Anyway with all of my appointments, my husbands, and the three boys, someone is always going to the doctor!
~Santana~
He done different test than any of the opthomologist have done and seemed to have seen dysfunction like mine, from the brain not the eyes before! All of the optho's treat the eyes but are kind of clueless about the brains role in things!
I hear you on the appointments! Today I had to take all three boys in for a vision check. They had never had one except for the ones at school. After all of my vision problems and all that I have learned can go wrong with vision I didn't want to take a chance with thier vision. The two oldest checked out fine, but my youngest, Seth who is 7 had a slight stigmatism that I didn't know he had. He got some glasses to wear only when doing school work or reading. He likes to draw and I had noticed him leaning in on the table putting his head close to his work. He makes straight A's so this was my only warning that something was wrong with his vision.
Anyway with all of my appointments, my husbands, and the three boys, someone is always going to the doctor!
~Santana~
Wanna:O
I waited three weeks to start the Restasis, because I wanted to do some reasearch on it first! It has a pretty safe profile from what I have read on it so far. The eye pain, swelling of the lids from the Meibomian Gland Dysfunction added to the Blepharitis has been a real struggle for me for two years, and I am just tired of hurting all of the time!
The warm compresses, eyelid massage, and the scrubs with diluted water and baby shampoo helped some along with the artificial tears, but it just wasn't controlling this! The Restasis is actually starting to take down the inflamation on my eyelid and lash margins, maybe it is because it is an immune supressant eye drop and obviously I must have some sort of immune based problem with 10 lesions on my brain, kind of makes sinse to me!
Also let me know how the lip biopsy goes, I am a little nervous about this test for some odd reason!
Also if any of you are on the artifical tears, take my advise and take the Refresh Plus that says Sensitive and is in individual vials. They are preservative free. I was unknowingly using the regualar ones for over a year and the preservatives in them were exacerbating my symptoms! The Refresh Plus do the same job without the irritation and they are more sanitary as they are single use vials!
~Santana~
I waited three weeks to start the Restasis, because I wanted to do some reasearch on it first! It has a pretty safe profile from what I have read on it so far. The eye pain, swelling of the lids from the Meibomian Gland Dysfunction added to the Blepharitis has been a real struggle for me for two years, and I am just tired of hurting all of the time!
The warm compresses, eyelid massage, and the scrubs with diluted water and baby shampoo helped some along with the artificial tears, but it just wasn't controlling this! The Restasis is actually starting to take down the inflamation on my eyelid and lash margins, maybe it is because it is an immune supressant eye drop and obviously I must have some sort of immune based problem with 10 lesions on my brain, kind of makes sinse to me!
Also let me know how the lip biopsy goes, I am a little nervous about this test for some odd reason!
Also if any of you are on the artifical tears, take my advise and take the Refresh Plus that says Sensitive and is in individual vials. They are preservative free. I was unknowingly using the regualar ones for over a year and the preservatives in them were exacerbating my symptoms! The Refresh Plus do the same job without the irritation and they are more sanitary as they are single use vials!
~Santana~
I'm so glad to hear that the Restasis is working for you!!! :-) It's great to see you having some improvement and relief and it's a special plus that it's not a steroid!!
Hopefully the vision therapy will speed up your recovery. Let us know how that goes. I'm curious to see what therapy they offfer you.
I think that's a good idea to ask about scanning your c-spine along with the brain.
Girl, I sure know what you mean about the appointments.... >:-| I'm so sick and tired of them too!!! Add in my kids' doc and dental appointments and I swear I'm at a doc 3-4 times a week!!!!
Take care and thanks for sharing the good news!!! Pat :)
Hopefully the vision therapy will speed up your recovery. Let us know how that goes. I'm curious to see what therapy they offfer you.
I think that's a good idea to ask about scanning your c-spine along with the brain.
Girl, I sure know what you mean about the appointments.... >:-| I'm so sick and tired of them too!!! Add in my kids' doc and dental appointments and I swear I'm at a doc 3-4 times a week!!!!
Take care and thanks for sharing the good news!!! Pat :)
Thank you for posting the positive experience with Restasis. I have a dry/stinging eye thing going on and my ophthalmologist will give me the Rx of Restatis if I want it, but I am starting treatment for Sjogren's symptoms (and some other connective tissue disorder symptoms) and I would like to see if that helps with my eyes before starting Restasis. For now I am using an eye lubricant. Often my eyes are red and it has increased lately because my husband keeps asking me if I am crying!
I am scheduled for my "lip" biopsy next week, and the day after it I am starting my meds and do not have to wait for the biopsy results. Yahoo!
I'll let you know what the biopsy is like if you'd care to know.
Again, thanks for your positive experience with Restasis. It really helps to read about the successful treatments.
Best wishes.
Wanna:o)
I am scheduled for my "lip" biopsy next week, and the day after it I am starting my meds and do not have to wait for the biopsy results. Yahoo!
I'll let you know what the biopsy is like if you'd care to know.
Again, thanks for your positive experience with Restasis. It really helps to read about the successful treatments.
Best wishes.
Wanna:o)
I went to the Rheumatologist and she ran the blood test for the antibodies for Sjogren's on me. It came back negative in both test. Also the hematologist had done an ANA that also came back negative.
The Rheumy said that I could still have the syndrome of Sjogren's even though the blood testing was negative, Which this I completely don't understand! I guess the next test will be the lip biopsy to try to rule Sjogren's in or out!
In the meantime I am preparing to go back to the low vision specialist to get some filters to help with the glare and try to start vision therapy to see if this can speed up my visual functioning some! I am still improving in my vision and the visual field defect continues to get smaller but it has been two years and it is recovering so slowly!
I go back to see my neuro this month and I am going to ask him if he will scan my C-spine as well as my entire spine along with the regular every six months brain MRI. Then It is back to the optho to check my eyes and vision and to see how the Restasis is working! I'll tell you it seems the doctor appointments never slow down. I am so sick of looking at doctors offices, lol~~~~
How have you been, and what has been going on with you lately?
~Santana~
The Rheumy said that I could still have the syndrome of Sjogren's even though the blood testing was negative, Which this I completely don't understand! I guess the next test will be the lip biopsy to try to rule Sjogren's in or out!
In the meantime I am preparing to go back to the low vision specialist to get some filters to help with the glare and try to start vision therapy to see if this can speed up my visual functioning some! I am still improving in my vision and the visual field defect continues to get smaller but it has been two years and it is recovering so slowly!
I go back to see my neuro this month and I am going to ask him if he will scan my C-spine as well as my entire spine along with the regular every six months brain MRI. Then It is back to the optho to check my eyes and vision and to see how the Restasis is working! I'll tell you it seems the doctor appointments never slow down. I am so sick of looking at doctors offices, lol~~~~
How have you been, and what has been going on with you lately?
~Santana~
How wonderful to hear that you are getting relief. I'm so happy for you. Dry eyes are a pain to have, literally. I'm glad it's safer than steroids and has less side effects. Steroids, when used a lot, can cause nasty side effects and can cause more problems down the road.
Have they done any more testing on you to find a DX? I was going to contact you the other day because they re-runned an episode of Mystery Diagnosis on Discovery Health. It was about the lady who had Sjogrens. That's one of the possibilities that's on the table for me along with MS since my mother suffers with it and I was tested back in the late 90s and showed some characteristics of it but of course we're not sure.
Have you ever heard if you could have both MS & Sjogrens? I know that thyroid conditions are common with Sjogrens (Hypothyroid & Hashimotos) but I've never heard about MS.
Glad your feeling better!
Have they done any more testing on you to find a DX? I was going to contact you the other day because they re-runned an episode of Mystery Diagnosis on Discovery Health. It was about the lady who had Sjogrens. That's one of the possibilities that's on the table for me along with MS since my mother suffers with it and I was tested back in the late 90s and showed some characteristics of it but of course we're not sure.
Have you ever heard if you could have both MS & Sjogrens? I know that thyroid conditions are common with Sjogrens (Hypothyroid & Hashimotos) but I've never heard about MS.
Glad your feeling better!
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