Aa
Great Doctors and the continued Thickening Plot
I had my appointment with the Rheumatologist yesterday. My PCP had referred me to look into Sjogrens because of my chronic Parotid gland swelling and other things.
He performed the Schirmer test. That test is placing two strips of paper in each eye and then having the patient close their eyes. Normal is greater or equal to 15 millimeters and mine was 1, but of course there are other criteria.
He sent me over for an x-ray because he was suspicious of Interstitial Lung Disease, something that I don’t even want to think about right now so I will deal with it later. When I got in my car I began to cry a bit about that as I am out of breath much of the time.
I go back tomorrow morning for two biopsies. One of the Aphthous ulcer that I have had now for 6 months and then he will biopsy the salivary glands. He was quite concerned about these and didn’t even want to wait until Friday for the biopsies. Quix has been very direct and firm in her concern about these things. It has taken time, but finally a doctor is following through. I was just so tired. If only Quix could be our physician!
He ordered massive amounts of blood tests. Ten vials of blood were taken for a host of things I didn’t recognize. He even ordered an HIV test, he asked if he could ---it’s highly unlikely.
After the biopsies I go to see the neuro-opthalmologist assuming I can make it through the snow.
Thanks to all for all the support you have given. You are the best!
Red
He performed the Schirmer test. That test is placing two strips of paper in each eye and then having the patient close their eyes. Normal is greater or equal to 15 millimeters and mine was 1, but of course there are other criteria.
He sent me over for an x-ray because he was suspicious of Interstitial Lung Disease, something that I don’t even want to think about right now so I will deal with it later. When I got in my car I began to cry a bit about that as I am out of breath much of the time.
I go back tomorrow morning for two biopsies. One of the Aphthous ulcer that I have had now for 6 months and then he will biopsy the salivary glands. He was quite concerned about these and didn’t even want to wait until Friday for the biopsies. Quix has been very direct and firm in her concern about these things. It has taken time, but finally a doctor is following through. I was just so tired. If only Quix could be our physician!
He ordered massive amounts of blood tests. Ten vials of blood were taken for a host of things I didn’t recognize. He even ordered an HIV test, he asked if he could ---it’s highly unlikely.
After the biopsies I go to see the neuro-opthalmologist assuming I can make it through the snow.
Thanks to all for all the support you have given. You are the best!
Red
I'm so glad that you are on a productive tract Red!! I realize there are multiple layers of things to react to here AND there are still things to be learned. For today, I'm going to celebrate a doc who is familiar enough with Bechet's to look for it and the promise ot treatment for the mouth lesions. I hope you are able to enjoy a moment of vindication in this and hold onto the satisfaction in that.
Kudos to you for keeping these everlasting "temporary" oral events in the spotlight. I know they aren't near as easy to ignore when your is the mouth they've decided to reside in. I remember your frustration and the temptations to give in and give up. I so hope that there is some relief in store for you soon.
Seems NOTHING holds a flame to the heal of the diagnostic process though. It's a slow as ever. Well, just think of those congested CA freeways -- any little crawl or creep beats out the zero progress of the sit still. Looks like you are on the move!
Mary
Kudos to you for keeping these everlasting "temporary" oral events in the spotlight. I know they aren't near as easy to ignore when your is the mouth they've decided to reside in. I remember your frustration and the temptations to give in and give up. I so hope that there is some relief in store for you soon.
Seems NOTHING holds a flame to the heal of the diagnostic process though. It's a slow as ever. Well, just think of those congested CA freeways -- any little crawl or creep beats out the zero progress of the sit still. Looks like you are on the move!
Mary
I forgot an important thing that was found.
I tested positive for the gene for Behcets. It's HLA-B51, rare in America but I do have some middle-eastern heritage (Israel).
Red
I tested positive for the gene for Behcets. It's HLA-B51, rare in America but I do have some middle-eastern heritage (Israel).
Red
Hi Candy, thank you!
Mary and all---I do have some answers
The new rheumatologist called yesterday and told me the results of the biopsy. I had a small amount of inflammation in my salivary glands but minimul. I was at a 1 whereas Sjogrens would be a 15. So, he thinks that would be unlikely--not impossible---but unlikely.
What he is pursuing is Behcet's with the neurological manifestations. He referred me to medical dentistry which I will see Feb. 3 for evaluation of my oral lesions etc. I have prescription mouthwash to help til then.
He wants to confer with my neurologist regarding some things and wants another lumbar puncture and new MRI's.
I already had the 'six month' MRI set for March.
I saw my neurologist today. She didn't flinch when I told her about the Behcets Disease. She is going to take care of this, she said she couldn't order anything until she talks to him. We increased my Neurontin to 800mg three times a day.
I cancelled thursdays urology appointment. I did reschedule though. I just don't think I can do it. I had to be anesthetized for pelvic exams, gynecologists had to examine me before surgeries or procedures. I just don't think I can do this exam, I can't be exposed that way---I will crumble. I go into flashback mode and I can't stop it.
So, after the medical dentistry, they will order specific tests.
I see the pain doctor in March thank God.
Some say PPMS, some say other things. The one single thing everyone agrees on is that I am progressing.
There are many things in life that we have no control over. This is one of them.
Red
Mary and all---I do have some answers
The new rheumatologist called yesterday and told me the results of the biopsy. I had a small amount of inflammation in my salivary glands but minimul. I was at a 1 whereas Sjogrens would be a 15. So, he thinks that would be unlikely--not impossible---but unlikely.
What he is pursuing is Behcet's with the neurological manifestations. He referred me to medical dentistry which I will see Feb. 3 for evaluation of my oral lesions etc. I have prescription mouthwash to help til then.
He wants to confer with my neurologist regarding some things and wants another lumbar puncture and new MRI's.
I already had the 'six month' MRI set for March.
I saw my neurologist today. She didn't flinch when I told her about the Behcets Disease. She is going to take care of this, she said she couldn't order anything until she talks to him. We increased my Neurontin to 800mg three times a day.
I cancelled thursdays urology appointment. I did reschedule though. I just don't think I can do it. I had to be anesthetized for pelvic exams, gynecologists had to examine me before surgeries or procedures. I just don't think I can do this exam, I can't be exposed that way---I will crumble. I go into flashback mode and I can't stop it.
So, after the medical dentistry, they will order specific tests.
I see the pain doctor in March thank God.
Some say PPMS, some say other things. The one single thing everyone agrees on is that I am progressing.
There are many things in life that we have no control over. This is one of them.
Red
Hi Red,
So very sorry you are having such a difficult time right now. But, maybe with some of the answers you got this time, the list of tests and such will be shortened. I do hope so.
I'm glad that they are pursueing things though, cause you would not really want them to ignore them.
I do hope the answers are positive, and good for you, and that you will soon be feeling better with some answers in your pocket.
take care Red,
Candy
*HUGS*
So very sorry you are having such a difficult time right now. But, maybe with some of the answers you got this time, the list of tests and such will be shortened. I do hope so.
I'm glad that they are pursueing things though, cause you would not really want them to ignore them.
I do hope the answers are positive, and good for you, and that you will soon be feeling better with some answers in your pocket.
take care Red,
Candy
*HUGS*
Draining one wallet doesn't necessarily plump up another WAF.
Just another opinion .... Yes, I realize they are often worthless or unwelcome (opinions, that is).... but I still think this is well worth your time and money to persue this Red. You describe several limitations that have been life altering and rapidly progressive. Conditions that rob people of livlihood and enjoyment need to be treated within SOME basis, even if there can't be a firm specific diagnosis. Taking shots in the dark may be a workable stradegy for the disease of MS. Effective health care works better with a plan.
I HAVE NEVER BEEN LEFT WITH THE IMPRESSION THAT ANY HEALTH CARE PROVIDER (INDIVIDUAL OR INSTITUTION) WAS MAKING A LOT OF MONEY FROM THE TESTING OR TREATMENT DONE ON MY BEHALF (The one exception I may allow would be pharmaceutical.)
In fact, most every provider who has seen or tested me was careful to obtain old records and provide new results to others so testing (and the costs involved) wouldn't have to be repeated needlessly. I just haven't seen spreadsheet balance trump a richness of compassion toward patients.
Besides, expensive testing is recommended to follow the progression of MS once it is diagnosed. The money grabbing theory doesn't really make sense if you follow it out to a logical conclussion. It does make us feel better on high frustration days though.
Sorry. Just dropped in and must be on a hair trigger today. How long before you expect to hear more Red?
Mary
Just another opinion .... Yes, I realize they are often worthless or unwelcome (opinions, that is).... but I still think this is well worth your time and money to persue this Red. You describe several limitations that have been life altering and rapidly progressive. Conditions that rob people of livlihood and enjoyment need to be treated within SOME basis, even if there can't be a firm specific diagnosis. Taking shots in the dark may be a workable stradegy for the disease of MS. Effective health care works better with a plan.
I HAVE NEVER BEEN LEFT WITH THE IMPRESSION THAT ANY HEALTH CARE PROVIDER (INDIVIDUAL OR INSTITUTION) WAS MAKING A LOT OF MONEY FROM THE TESTING OR TREATMENT DONE ON MY BEHALF (The one exception I may allow would be pharmaceutical.)
In fact, most every provider who has seen or tested me was careful to obtain old records and provide new results to others so testing (and the costs involved) wouldn't have to be repeated needlessly. I just haven't seen spreadsheet balance trump a richness of compassion toward patients.
Besides, expensive testing is recommended to follow the progression of MS once it is diagnosed. The money grabbing theory doesn't really make sense if you follow it out to a logical conclussion. It does make us feel better on high frustration days though.
Sorry. Just dropped in and must be on a hair trigger today. How long before you expect to hear more Red?
Mary
Thank you ladies!
Thank you for your prayers Sarah. Sometimes it is hard to believe the God is helping us as we can't see the whole picture. This illness and medical process has really stretched my faith.
I was really tired by the time I got to the opthalmologist. I don't know that I even explained my experience very well. I think there may be a more obvious eye situation at some point and that will help with eye diagnosis.
I will look at 'Lean On Me', I didn't realize that it was about MS.
Hugs XXXX
Red
Thank you for your prayers Sarah. Sometimes it is hard to believe the God is helping us as we can't see the whole picture. This illness and medical process has really stretched my faith.
I was really tired by the time I got to the opthalmologist. I don't know that I even explained my experience very well. I think there may be a more obvious eye situation at some point and that will help with eye diagnosis.
I will look at 'Lean On Me', I didn't realize that it was about MS.
Hugs XXXX
Red
You are such a sweetheart with your huggy hugs to Red! I'm sending a zillion hugs across the Atlantic to you too!!
WAF
P.S. Have Prince William and Kate set the date yet? What is it?
WAF
P.S. Have Prince William and Kate set the date yet? What is it?
Sheesh Red, I'm a little out of the loop, not having perused this site for a while, but I thought they had determined you had MS!!! Was that diagnosis taken away from you?
You have spunk to go through all these tests, but, having done essentially the same thing myself without anything to show for it, I have to reiterate: My impression is it's all basically just a money-maker for them. Diagnoses used to be easier to come by. Now that we have so much more technology and so many more diagnostics, it should be much easier to get diagnosed, yet most of us end up still left without an answer after much outlay of dinero for tests. However, by delaying diagnosis indefinitely, think how much more money they can make selling us every form of inquiry. It's the old carrot-on-a-string trick: This time, this test will give you the answer - right? Wrong!
Did you ever read the excellent book "Lean On Me" by Nancy Davis, a woman with MS? If not, I urge you to do so. There are other effective routes of inquiry and treatment besides modern medicine.
WAF
You have spunk to go through all these tests, but, having done essentially the same thing myself without anything to show for it, I have to reiterate: My impression is it's all basically just a money-maker for them. Diagnoses used to be easier to come by. Now that we have so much more technology and so many more diagnostics, it should be much easier to get diagnosed, yet most of us end up still left without an answer after much outlay of dinero for tests. However, by delaying diagnosis indefinitely, think how much more money they can make selling us every form of inquiry. It's the old carrot-on-a-string trick: This time, this test will give you the answer - right? Wrong!
Did you ever read the excellent book "Lean On Me" by Nancy Davis, a woman with MS? If not, I urge you to do so. There are other effective routes of inquiry and treatment besides modern medicine.
WAF
Your courage and persistence is an inspiration to us all and you are such a special person who deserves to find answers. I am not too sure if luck plays a part in any of this and sometimes finding myself questioning the hand that God throws us..but I shall continue to have faith that someone up there knows what he is doing and will give him his work sending a load more prayers for you. Hopefully he will decide to sort it out soon to save himself some time having to work his way through them all as I know that others on this forum are keeping you in their thoughts and prayers too.
Take care dear Red
Love and huge huggy hugs
Sarah
Take care dear Red
Love and huge huggy hugs
Sarah
Hi Red
Just wanted to comment on the eye issue and say, yes, It is so frustrating! My first symtpoms of my non-ms problems were eye probs. for me, Hazy vision like it's always a foggy day. I saw at least 5 eye doctors including back to my specialiast pediatric opthalmologist who did my strabismus (turned eye surgery) whom I really respect and they could not find anything wrong! Not until I saw my current hematologist specialist did someone have an explanation (nerve damage from poor blood flow to the eye). so, it was like 4 years later?! I'm more comfortable now, but have gotten used to my vision issues so I don't notice so much now. I haven't driven for a few years, but I feel comfortable enough to drive again.
Just wanted to comment on the eye issue and say, yes, It is so frustrating! My first symtpoms of my non-ms problems were eye probs. for me, Hazy vision like it's always a foggy day. I saw at least 5 eye doctors including back to my specialiast pediatric opthalmologist who did my strabismus (turned eye surgery) whom I really respect and they could not find anything wrong! Not until I saw my current hematologist specialist did someone have an explanation (nerve damage from poor blood flow to the eye). so, it was like 4 years later?! I'm more comfortable now, but have gotten used to my vision issues so I don't notice so much now. I haven't driven for a few years, but I feel comfortable enough to drive again.
Hi Red. Please keep us informed. I'm really interested to hear what they say about your salivary gland. Ironically I went to my pcp today because I have 2 swollen areas on my face that just appeared Tuesday.
He looked at me for awhile and said that it looks like my salivary gland is swollen. He said to call him Monday and let him know how I am, and then he may send me to an ent to have it looked at further.
I have chronic dry eyes and dry mouth and the swelling is new. The dry eyes may be caused by the lyrica I take.
Anyways I'm so glad to hear that you have found at least one doctor that is helping you.
He looked at me for awhile and said that it looks like my salivary gland is swollen. He said to call him Monday and let him know how I am, and then he may send me to an ent to have it looked at further.
I have chronic dry eyes and dry mouth and the swelling is new. The dry eyes may be caused by the lyrica I take.
Anyways I'm so glad to hear that you have found at least one doctor that is helping you.
Thank you so much for all the information. It helps to know what it is and to be able to talk with you. I will private message you tomorrow.
Hugs, Red
Hugs, Red
For those who wanted the update--
My salivary gland biopsy went well today. It wasn't painful at all and only took a few minutes. I'm not sure when I will have the results.
I thought he was doing the biopsy of the oral ulcer but he had actually referred that part out.
My lung x-ray was fine thank God.
He had tested me for the Behcet's disease gene which I do have. Not sure where that will go.
The neuro-opthalmology visit was a disaster. A 5 hour long drawn out ordeal with many residents with endless redundant questions and tons of tests. I felt like I got absolutely nowhere. I don't think they were ever on the same page with each other. I felt like I was in an LSD trip. The 5 or 6 minutes I had with the famous doctor was spent with me re-directing and re-iterating why I was there. He kept talking about eye exercises when I finally got him to shut up. I asked him about my driving problems. He said I was fine. I said "so the other cars really are coming out of nowhere"? He said, "no.....you just arent concentrating".
I kept trying to get up while he kept asking me more repetitive questions about which doctors to send his report to. He finally gave me the paperwork packet to take to check out. I threw the packet in the trash. I can't believe I did that.
I'm pretty discouraged about the vision issue. The Kellogg Center is a brand new state of the art multi-million dollar 'place'. Of course they know what they are doing----I guess this means I can drive full time now?
Any thoughts, experiences or suggestions? greatly appreciated.
Thanks guys!
Red
My salivary gland biopsy went well today. It wasn't painful at all and only took a few minutes. I'm not sure when I will have the results.
I thought he was doing the biopsy of the oral ulcer but he had actually referred that part out.
My lung x-ray was fine thank God.
He had tested me for the Behcet's disease gene which I do have. Not sure where that will go.
The neuro-opthalmology visit was a disaster. A 5 hour long drawn out ordeal with many residents with endless redundant questions and tons of tests. I felt like I got absolutely nowhere. I don't think they were ever on the same page with each other. I felt like I was in an LSD trip. The 5 or 6 minutes I had with the famous doctor was spent with me re-directing and re-iterating why I was there. He kept talking about eye exercises when I finally got him to shut up. I asked him about my driving problems. He said I was fine. I said "so the other cars really are coming out of nowhere"? He said, "no.....you just arent concentrating".
I kept trying to get up while he kept asking me more repetitive questions about which doctors to send his report to. He finally gave me the paperwork packet to take to check out. I threw the packet in the trash. I can't believe I did that.
I'm pretty discouraged about the vision issue. The Kellogg Center is a brand new state of the art multi-million dollar 'place'. Of course they know what they are doing----I guess this means I can drive full time now?
Any thoughts, experiences or suggestions? greatly appreciated.
Thanks guys!
Red
So glad your getting somewhere!
The salivary biopsy that you are getting (also known as a lip biopsy) will more accurately show whether or not you have Sjogren's or not with the combination of your patient history, and other Sjogren disease markers (dry eyes, dry mouth, swollen salivary glands). The blood test doesn't always come up positive in all patients ( the SS-A & SS-B). My mother has primary Sjogren's and she has had it for 10+ years and the blood test is still normal.
The only difference between primary & secondary is..primary is when you have Sjogren's and no other auto immune disease. Secondary is when you have another autoimmune disease (ex.lupus, RA, Scleroderma, etc) present prior to Sjogren's..but it's still treated the same.
My mother was diagnosed through a salivary gland biopsy. The classic signs they are looking for is lymphocytic infiltration & chronic inflammation of the minor salivary glands. In my readings there is only 2 diseases that can effect the salivary glands (Sjogren's & Sarcoidosis) and these 2 diseases can both attack the lungs, but Sjogren's looks different as far as the biopsy.
Sjogren's is also known as a perfect MS mimicker. It not only can involve the CNS and put lesions on your brain, but it can put lesions in your spine. It is one of the few disease that can.
My mother is now on symptom treatment & Plaquenil which has helped a great deal. The biopsy isn't that bad..I had one as well (I didn't have Sjogren's). I hope you get some info from this and if you need any info about Sjogrens...feel free to contact me.
I know my mother has had issues with vascular, stomach, eyes, muscular, glands...just to name a few.
Take Care
The salivary biopsy that you are getting (also known as a lip biopsy) will more accurately show whether or not you have Sjogren's or not with the combination of your patient history, and other Sjogren disease markers (dry eyes, dry mouth, swollen salivary glands). The blood test doesn't always come up positive in all patients ( the SS-A & SS-B). My mother has primary Sjogren's and she has had it for 10+ years and the blood test is still normal.
The only difference between primary & secondary is..primary is when you have Sjogren's and no other auto immune disease. Secondary is when you have another autoimmune disease (ex.lupus, RA, Scleroderma, etc) present prior to Sjogren's..but it's still treated the same.
My mother was diagnosed through a salivary gland biopsy. The classic signs they are looking for is lymphocytic infiltration & chronic inflammation of the minor salivary glands. In my readings there is only 2 diseases that can effect the salivary glands (Sjogren's & Sarcoidosis) and these 2 diseases can both attack the lungs, but Sjogren's looks different as far as the biopsy.
Sjogren's is also known as a perfect MS mimicker. It not only can involve the CNS and put lesions on your brain, but it can put lesions in your spine. It is one of the few disease that can.
My mother is now on symptom treatment & Plaquenil which has helped a great deal. The biopsy isn't that bad..I had one as well (I didn't have Sjogren's). I hope you get some info from this and if you need any info about Sjogrens...feel free to contact me.
I know my mother has had issues with vascular, stomach, eyes, muscular, glands...just to name a few.
Take Care
Hi Red and glad you are getting some help from the docs!
Hang in there and I hope you get some answers soon!
Hang in there and I hope you get some answers soon!
Hi Red! I'm. So relieved you found a doctor that is taking you seriously and further, is taking some action! It is long overdue.
I will continue to keep you in my prayers. Hugs!!
I will continue to keep you in my prayers. Hugs!!
Hi, Red--
Relieved to hear you've still got fight in you, and 2nd the dream about Dr. Quix. :)
Sadie
Relieved to hear you've still got fight in you, and 2nd the dream about Dr. Quix. :)
Sadie
geez Lu, a zero! What a terrible disease.
kelly, they have to rule Sjogrens out. There is a primary and a secondary type. I'm not sure how it all works----but yes, a biopsy of salivary gland is part of that diagnostic process.
I will keep all of you posted.
thanks again,
Red
kelly, they have to rule Sjogrens out. There is a primary and a secondary type. I'm not sure how it all works----but yes, a biopsy of salivary gland is part of that diagnostic process.
I will keep all of you posted.
thanks again,
Red
I'm glad to hear the doctor is retesting some of these other problems. as for the schirmer, I feel for you because mine was ZERO. They said they had never registered an eye that dry. A one might as well be zero. Hopefully they gave you some drops to help ease the eye strain because that really does make a difference.
as for the rest of your tests- it is long overdue to have them done. keep us posted.
as for the rest of your tests- it is long overdue to have them done. keep us posted.
Red, it sounds like you're on the right track so far. I hope they can figure it all out for you - ASAP. I know it has to be really frustrating.
Do they think you might have Sjögren's Syndrome with them wanting to biopsy your salivary glands?
Do they think you might have Sjögren's Syndrome with them wanting to biopsy your salivary glands?
Red, I am so proud of you for not giving up the fight!!!!! I hope this time these doctors take you seriously and really offer some help. You have struggled too long from lack of good medical care. I am so hopeful this time for you.
you are in my thoughts and prayers.....so glad you found a doctor that is going to find out what is wrong, so happy to here that!
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