Discussions By Condition: I cannot get a diagnosis.

Sjogren's and Hepatitis C

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Bethi324
  • April 10, 2007
  • 00:06 AM

:confused: Hello: This is my first visit to these boards and I am sure I found the right place. I was diagnosed with Sicca Syndrome and I was misdiagnosed. I have Hepatitis C Virus (HCV) and the many complications that are associated with this potential life threatening virus. This disease tends to mimic other illnesses and just when they think they have found something it is not that at all.

I had posted my symptoms on a Hepatitis C board and someone there directed me to here. I hope to be able to share my symptoms and try suggestions.

First I have end stage cirrhosis from failed treatments available for HCV. Then I because an insulin dependent diabetic along with muscle and joint diagnosis including narropothy, vasculitis, rheumatoid arthritis, etc. Well and good but with all of this pain i suffer with the pain unlike any other pain is in my mouth.

I have ruptured ulcers on my tongue and they will not heal. I have approximately 10 cavities and before this never had a cavity for 25 years. Any dental work does not help because all fillings fall out because of re decay. I have no saliva and try desperately to do what i can to make my mouth wet. Hard time swallowing because of lack of saliva and cannot have teeth pulled and get dentures because the underlying problem still exist.

SJOGREN'S SYNDROME!!!!!!!

Unlike others with this, I have to be very careful because of the diabetes and sodium. This is messed up.

i am more then willing to share information and my own opinion.

If anyone has any suggestions it would be greatly appreciate. Remember there are still many people uneducated about hepatitis c and some dentist or doctors won't even touch your mouth because of the bleeding.

Help

Bethi

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5 Replies:

  • Havving HCV myself, I understand our predicament. I have experienced recurring Lichen Planis which can be quite painful. The solution I have used successfully to sort of irrigate my oral cavity is a commercial product called "Biotene". It has worked very well and serves to soothe the pain as well as cleanse teeth. I hope this helps. Good Luck
    Anonymous 42789 Replies Flag this Response
  • Thank you for the post on the medication for whatever this strange illness is. I would like to let everyone know that I ran into a very bad problem with this infection or auto immune disease in my mouth. When you are on SSDI, medicare part a will not pay for any dental work. I was furious. I'm border line transplant for a liver but they pay for infections in the mouth for kidney transplants but not for the liver?????????????\ I have contacted my us congress and senators and I hope more of you can do the same. This is a dental issue only because you have a medical condition that causes this. Two of my teeth were so bad that last week I had to have platelet and blood transfusions because my platelets and white count are so low and medicare paid for that. But I left the hospital and went to the oral surgeon and had to pay for that. They couldn't put me to sleep because they didn't know if I would bleed to death because I have no more immune system and local novocaine just doesnt cut it. We need help. God Bless, Bethie
    Bethi324 2 Replies Flag this Response
  • :confused: Hello: This is my first visit to these boards and I am sure I found the right place. I was diagnosed with Sicca Syndrome and I was misdiagnosed. I have Hepatitis C Virus (HCV) and the many complications that are associated with this potential life threatening virus. This disease tends to mimic other illnesses and just when they think they have found something it is not that at all. I had posted my symptoms on a Hepatitis C board and someone there directed me to here. I hope to be able to share my symptoms and try suggestions. First I have end stage cirrhosis from failed treatments available for HCV. Then I because an insulin dependent diabetic along with muscle and joint diagnosis including narropothy, vasculitis, rheumatoid arthritis, etc. Well and good but with all of this pain i suffer with the pain unlike any other pain is in my mouth. I have ruptured ulcers on my tongue and they will not heal. I have approximately 10 cavities and before this never had a cavity for 25 years. Any dental work does not help because all fillings fall out because of re decay. I have no saliva and try desperately to do what i can to make my mouth wet. Hard time swallowing because of lack of saliva and cannot have teeth pulled and get dentures because the underlying problem still exist. SJOGREN'S SYNDROME!!!!!!! Unlike others with this, I have to be very careful because of the diabetes and sodium. This is messed up. i am more then willing to share information and my own opinion. If anyone has any suggestions it would be greatly appreciate. Remember there are still many people uneducated about hepatitis c and some dentist or doctors won't even touch your mouth because of the bleeding. Help BethiTHERE IS A MEDICINE CURE FOR DRY MOUTH THAT CREATES SALIVA FOR THEPERSON WHO HAS SJOGRENS SYNDROME....THAT MEDICINE IS EVOXAC 30MGTHAT IS TAKEN EITHER 2 OR 3 TIMES A DAY...IT WORKS AND IS COVERED BY ALLINSURANCE CARRIERS...THIS DISEASE WILL DESTROY ALL OF YOUR BOTTOM TEETHAND WILL TAKE ABOUT $10,000 TO RECTIFY FOR IMPLANTS, ETC.
    Anonymous 42789 Replies Flag this Response
  • Thank you so much for the information. I will speak with my dr. tomorrow. This truly has been a nightmare. I finally found a surgeon to extract all my teeth and surgery was 6 hours. How funny I just got your post because on Wednesday last week I got a bill from anesthesia that medicare denied the claim. So now medicare won't pay this because it is related to my teeth. I cannot believe that Federal Legislatures have a right to put "Fringe Benefits" on Social Security Act 1862. Well this bill is going to both my Federal Senator's tomorrow. All of my mouth problems came from Sjogren's Syndrome. The social security act limits extractions to pre and post kidney transplants only. Anyone else who needs any other type of transplant does not qualify. My US Senator did receive a letter that this would be covered because of underlying medical conditions. Somehow someway I am going to get this Social Security Act Amendment. It's the only to get around our dear elected officials who have gotten away with leaving this country broke. One more will not hurt us, just have to get someone to sponsor this. Maybe we will get lucky while we wait and pay 4.00 a gallon for gas, and almost 4.00 for a gallon of milk. Thank you so much for the help on the medication.God Bless and Support our Troops, Beth:confused: PS: The surgery was back in September and now I am just getting a bill. Well, bill this. :rolleyes:
    Bethi324 2 Replies Flag this Response
  • Dear Beth, there is a medication you can purchase over the counter that helps make saliva in fact it is some gums as well it is called Xylitol, check it out, Dentyne has one that has that product in it....Also you can buy another product called biotene!!! please get these products!!! I work for a dentist and I used to work for a wonderful dentist who was very knowledgeable who provided me with this information. Also rinse with warm salt water, and another product that will provide some support if flouridated water for babies, plus drinking plenty of water daily and eating healthy... I will pray that you get healed from this disease.:confused: Hello: This is my first visit to these boards and I am sure I found the right place. I was diagnosed with Sicca Syndrome and I was misdiagnosed. I have Hepatitis C Virus (HCV) and the many complications that are associated with this potential life threatening virus. This disease tends to mimic other illnesses and just when they think they have found something it is not that at all. I had posted my symptoms on a Hepatitis C board and someone there directed me to here. I hope to be able to share my symptoms and try suggestions. First I have end stage cirrhosis from failed treatments available for HCV. Then I because an insulin dependent diabetic along with muscle and joint diagnosis including narropothy, vasculitis, rheumatoid arthritis, etc. Well and good but with all of this pain i suffer with the pain unlike any other pain is in my mouth. I have ruptured ulcers on my tongue and they will not heal. I have approximately 10 cavities and before this never had a cavity for 25 years. Any dental work does not help because all fillings fall out because of re decay. I have no saliva and try desperately to do what i can to make my mouth wet. Hard time swallowing because of lack of saliva and cannot have teeth pulled and get dentures because the underlying problem still exist. SJOGREN'S SYNDROME!!!!!!! Unlike others with this, I have to be very careful because of the diabetes and sodium. This is messed up. i am more then willing to share information and my own opinion. If anyone has any suggestions it would be greatly appreciate. Remember there are still many people uneducated about hepatitis c and some dentist or doctors won't even touch your mouth because of the bleeding. Help Bethi
    Anonymous 42789 Replies Flag this Response
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