Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I’m in pain most days and would like to have discussions.

@peach414144

I have both sjogrens and psoriatic arthritis and rheumatoid. The doctors here in Ocala, Florida have no clue. Help. 81 years on this earth. Long time to suffer. (Many other health problems as well.) Boy wold I be a great patient for study. Well, here I am. Perhaps Mayo could use me as a study. What think??????

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@peach414144
I'm sorry to hear that you are not getting the help that you need. You might contact the Mayo facility in Jacksonville, FL to see if they can help with your multiple autoimmune disorders.

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@peach414144

I have both sjogrens and psoriatic arthritis and rheumatoid. The doctors here in Ocala, Florida have no clue. Help. 81 years on this earth. Long time to suffer. (Many other health problems as well.) Boy wold I be a great patient for study. Well, here I am. Perhaps Mayo could use me as a study. What think??????

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Great

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In reply to @tigerlilly "Great" + (show)
@tigerlilly

@tigerlilly Mayo in Jacksonville is a miraculous place. You should def check them out. They are cutting edge in the medical field and they have a great system. By great, I mean, you get tested, get results from test, and a treatment plan all in the same day usually.

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I have lived with Sjogrens Syndrome for years. Before I was diagnosed with Sjogrens I was diagnosed with Fibromyalgia. I get tired very easy, and I am 72. I never know which of those illnesses causes what! I was never asked to take a lip biopsy. From my perspective sufferers need a kind, gentle person to deal with their ups and downs. Surround yourself with good people that love you. And then you pray…

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@8j4p2r

I have lived with Sjogrens Syndrome for years. Before I was diagnosed with Sjogrens I was diagnosed with Fibromyalgia. I get tired very easy, and I am 72. I never know which of those illnesses causes what! I was never asked to take a lip biopsy. From my perspective sufferers need a kind, gentle person to deal with their ups and downs. Surround yourself with good people that love you. And then you pray…

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Dear 8j4p2r I do sympathize with you. I have sjogrens, rheumatoid and psoriatic arthritis (and other medical problems) It is impossible to know which one is the culprit when the symptoms are similar to each other. This also impedes proper treatment. It is a guessing game. I am now with a vascular doctor who is trying to treat me for the arthritis problems. I told her I have a rheumatologist and you want me to take a medication methylprednisolone which is contradictory and dangerous to the many medical diagnosis I have. I came to this doctor for the vascular problems I have. How do I handle this??????

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@414144 Good morning That is a
problem .Do you have a PCP that's your overall Dr With anything that deals with bones and muscles just stick with your rheumatologist Talk with your Dr on the other problem about your vascular Dr I think this is what I would do. Good luck I hope you solve your problem.

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@lioness

@414144 Good morning That is a
problem .Do you have a PCP that's your overall Dr With anything that deals with bones and muscles just stick with your rheumatologist Talk with your Dr on the other problem about your vascular Dr I think this is what I would do. Good luck I hope you solve your problem.

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Dear Lioness, Peach here. I went to a vascular doctor and she starts to treat me with medicine for the two arthritis problems I have-(Rheumatoid and Psoriatic) Two medications were prescribed that were dangerous to my life. She will not address the vascular problems. How to handle this? I have asked to see a different vascular doctor. (This doctor also yells at me and I do not have a hearing problem.) I brought medical reports, etc which i was told to bring with me and she did not want to see any of them. All this in just the one office visit I had with her.

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@peach414144

Dear Lioness, Peach here. I went to a vascular doctor and she starts to treat me with medicine for the two arthritis problems I have-(Rheumatoid and Psoriatic) Two medications were prescribed that were dangerous to my life. She will not address the vascular problems. How to handle this? I have asked to see a different vascular doctor. (This doctor also yells at me and I do not have a hearing problem.) I brought medical reports, etc which i was told to bring with me and she did not want to see any of them. All this in just the one office visit I had with her.

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,@peach414144 With that kind of attitude from her I would see another vascular Dr. What did your Dr say when you told him? You can seek another one 😉 I sure would I just had a rheumatologist do same thing sort of to me The office told me to bring my records When I got to appointment I was told I cancelled it after waiting 3months so they made copies of my records and gave me another appt. Then a couple of weeks ago he left the insurance so I'm still without a rheumatologist I don't understand Dr,s doing this .Hang in there and like me figure out something else.

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@cinnamon215

Can anyone tell me where I can find medical research documents or medical text that connects autoimmune condition(s) to tooth loss and/or cracking? I understand there is a connection to dry mouth / Sjogrens and perhaps others.

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Ask your dentist and look up Mayo Clinic. Saliva keeps you mouth clear of bacteria and cavities.

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@sueleerock

Yes, currently. First, my ear wax disappears for 8 yrs. From the interferon, it returns with a terrible earache I've had for a month now.

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It sounds like infection so see a doctor. My ears are dry and I have tinnitus.

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@lioness

@peach414144 I have was just thinking of you and wondering how you are glad your still here good to hear from you It's to bad this is how we do. I have sjorans also but am thankful I just have dry eyes and mouth .I use Biotene it helps me .I do have M.D. and glucoma my eyes water for no reason.I put drops in 4-5 times a day After reading how bad it can get I feel blessed its just my eyes and mouth Bless us all.

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Use fish oil daily. I take 2 or 3 large pills. Your eye doctor should have mentioned that with liquids and eye drops. A humidifier at night helps.

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@peach414144

@ Yes, I have psjogrems and other autoimmune diseases. No teeth, dry eyes, gloucoma, etc., etc., etc. It gets very bad. Somehow I am still here but it gets harder but so far I am still here.

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I have little sore knots on a few fingers and gout sometimes on my toes. Stay away from to much acidic foods O.J. or pineapple and ask for prednisone. Do not stay on prednisone it put weight on you.

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@kimber3429

So far not yet. I have just recently found out about it. My case is being reviewed by a Harvard Dr. That specializes in SS. Just to confirm my Diagnosis. It showed up in my bloodwork. I thought it was more Lupus. But my SS is primary. I had to be off work for a few months. The fatigue severly deteriorated my quality of look life. I have really severe brain fog to the point i can hardly create sentences, talk or comprhend anything. Which i do technical support over the phone for a living. Which ive been at my job 6 years. It has me questioning if i can even continue work with the amount of mistakes ive been making. Its been devestating. I am on Plaquenil now and prednisone. Which really helped the first fee months. Im ferling the effects of brain fog really bad again along with severe aches and pains. After having a non stop flare up for 6 months i thought i was starting to make progress but now i feel like one step forward, 2 steps back. The medication they gave me for the prolactinoma was toxic to my body. So my options are now limited there. I do see a rheumatologist, which i am not sure what he specializes in. This will be my 3rd visiit coming up. My eyes were swelling shut everyday for months and i couldnt get any Drs to listen. Its been a frustrating experience

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Look up social security disability for the description criteria on sjogren's. Gather every document from your doctors and see a lawyer (Morgan and Morgan) That is how I got my disability.

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@jmb73

I have had temporary plugs put in and they really helped. My Dr. didn't want to put the permanent ones in as he was concerned about having to take them out. He has replaced them a few times but they are wonderful. I was using drops every 15 minutes and now I can go for hours without using drops!

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Ask for lacracerts to put in your eyes.

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@marylou705

I have Sjogrens too and I was getting a chest scan frequently from m.y Cardiologist.  He kept spotting something in my right lung and we thought it was the Sjogrens but this time I got a shock.  It was lung cancer so I had a lobe removed in May.  Add to that I had a stroke in January and I now have an infection on my liver!  I am only saying this is possible, but rare.  I also have itchy ankles.  Primary problem is Psoriatic Arthritis.  Have you tried an OTC cortisone ointment on your itch?  @marylou705

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Check your liver it causes itching I believe. Look Youtube for some home remedy like baking soda.

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