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Old 04-18-2009, 11:46 AM   #1
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If Not Sjogren's then what is it?

I have been healthy up until September last year when I was struck down with what the doctors originally diagnosed as mumps.. swollen partoid glands... this lasted months and was extremely painful... I was taking painkillers 24/7 for months.. I had fatigue, hot/cold sweats, aches/pains, shortness of breath, etc.. mumps test came back negative and then the doctors said "dont know"

Tests at the hospital have been rounds of blood tests followed by an appointment with a rheumatologist two months later to say... "have a blood test and see you in a few months" - bloods have come back negative at the mo for Sjogrens.

The swelling in the partoid glands have subsided now due to lots of heat/massage techniques I learnt on another forum, and gradually the aches and pains and other symptoms went... I am left with dry mouth and eyes...

Still no diagnosis and am in the middle of another "blood test/see you in a few months" and have just woken up this week to having facial palsy..

I am on steroids and anti virals from my GP, and she says it isnt related to possible Sjogrens, but I have read on other sites that it can be..

Can anyone help me with this? I have read so much on Sjogrens, and am desperate for a diagnosis as I am not being treated at all yet... does it sound like Sjogrens to you? If it doesnt, what does it sound like lol???

Many thanks

ETA: Forgot to mention the lack of appetite... stated at 11stone1lbs and am now 10stone (in six months).

Last edited by fluffiebunnie; 04-18-2009 at 11:54 AM.

 
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Old 04-18-2009, 08:06 PM   #2
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Re: If Not Sjogren's then what is it?

Quote:
Originally Posted by fluffiebunnie View Post
I have been healthy up until September last year when I was struck down with what the doctors originally diagnosed as mumps.. swollen partoid glands... this lasted months and was extremely painful... I was taking painkillers 24/7 for months.. I had fatigue, hot/cold sweats, aches/pains, shortness of breath, etc.. mumps test came back negative and then the doctors said "dont know"

Tests at the hospital have been rounds of blood tests followed by an appointment with a rheumatologist two months later to say... "have a blood test and see you in a few months" - bloods have come back negative at the mo for Sjogrens.

The swelling in the partoid glands have subsided now due to lots of heat/massage techniques I learnt on another forum, and gradually the aches and pains and other symptoms went... I am left with dry mouth and eyes...

Still no diagnosis and am in the middle of another "blood test/see you in a few months" and have just woken up this week to having facial palsy..

I am on steroids and anti virals from my GP, and she says it isnt related to possible Sjogrens, but I have read on other sites that it can be..

Can anyone help me with this? I have read so much on Sjogrens, and am desperate for a diagnosis as I am not being treated at all yet... does it sound like Sjogrens to you? If it doesnt, what does it sound like lol???

Many thanks

ETA: Forgot to mention the lack of appetite... stated at 11stone1lbs and am now 10stone (in six months).
Hi there:
It could well be SS. I have always tested negative for all the blood markers, but when I had a lip biopsy done, it can back profoundly positive with long and well established white cell infiltration. Many doctors, even ENT specialists, don't seem to have a clue about this disease. I was diagnosed by an oral medicine specialist--this woman was a glorified dentist. You may wish to get a lip biopsy done. They too can give false negative results, but they are far more definitive overall. I have tons of weird neurological symptoms from it, too including facial numbness, and tingling, burning, numbness is other areas of my body, too. Plus, I have brain lesions--SS can cause these too.
Good luck and best wishes.

 
Old 04-19-2009, 11:33 AM   #3
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Re: If Not Sjogren's then what is it?

Thank you for your response.. I am too scared to have a lip biopsy done as I have heard horror stories.. what was your expierence of that like? I feel that until my blood shows positive for something I will be written off as a "viral infection", but now I have the numbness on my face it is something else to put to the Rheumatologist when I see him in August.

 
Old 04-19-2009, 04:24 PM   #4
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Re: If Not Sjogren's then what is it?

Quote:
Originally Posted by fluffiebunnie View Post
Thank you for your response.. I am too scared to have a lip biopsy done as I have heard horror stories.. what was your expierence of that like? I feel that until my blood shows positive for something I will be written off as a "viral infection", but now I have the numbness on my face it is something else to put to the Rheumatologist when I see him in August.
Hi again:
My lip biopsy was no problem. The oral medicine specialist who performed it gave me a topical anesthetic, then lots of via-needle freezing all over the inside of my mouth. I sat in a dental chair during the procedure, which only took a few minutes. She took specimens from several places in my mouth, not just the inside of my lip. I think she took a total of 6 specimens from various sites. This ensures a better result, to ensure any positive findings are a "one off" for that area. The specimens are sent to a pathologist to obtain a result. Here that usually takes a couple of weeks.
My mistake afterward the biopsy was indulging in my "comfort food" to console myself! My choice "sympathy to me" meal is pancakes with strawberries. The pancakes were fine, but the acidic strawberries were a big no-no! Even through the freezing, I could feel pain in my mouth when I ate them shortly after the biopsy. (I'd delayed eating breakfast that morning because like you, I was frightened, and didn't know what to expect. I didn't want to risk nausea from my excited nerves, so I held off eating breakfast until after the biospy.) My mouth was a little tender for a few days afterward the biopsy, and I needed to be mindful to avoid acidic or very hot foods, but that passed quickly and I've suffered no residual negative consequences from the procedure.
I would advise people NOT to have this done as a day surgery procedure by an ENT doctor. The original ENT doctor I'd seen some years previously made this lip biopsy out to be a much bigger and prolonged ordeal than would have been necessary. I proceeded on the recommendation of the oral medicine specialist, having the biopsy performed in her dental chair, and I'm glad I did that. I'm the biggest wimp on the planet, but even having had the procedure, if I was told that I'd need to repeat the lip biopsy, I would do so with no hesitation. I've had far worse mouth pain from my orthodontist!
Best wishes to you and take care.

 
Old 04-20-2009, 05:22 AM   #5
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Re: If Not Sjogren's then what is it?

Quote:
Originally Posted by fluffiebunnie View Post
I have been healthy up until September last year when I was struck down with what the doctors originally diagnosed as mumps.. swollen partoid glands... this lasted months and was extremely painful... I was taking painkillers 24/7 for months.. I had fatigue, hot/cold sweats, aches/pains, shortness of breath, etc.. mumps test came back negative and then the doctors said "dont know" ...The swelling in the partoid glands have subsided now due to lots of heat/massage techniques I learnt on another forum, and gradually the aches and pains and other symptoms went... I am left with dry mouth and eyes...
Your symptoms are typical symptoms of Lyme Disease in the early stages...and later Lyme can be (and often is) misdiagnosed as Sjogren's. Heat may help because this bacteria doesn't like to multiply/thrive in heat.
Quote:
.. and have just woken up this week to having facial palsy..
If there is such a thing as a classic symptom of Lyme, Bell's Palsy (facial palsy) is it!
Quote:
...I am on steroids and anti virals from my GP, and she says it isnt related to possible Sjogrens, ...
I believe that you have developed Bell's Palsy because of the steroids because they can make a bacterial infection (like Lyme) worse. I suspect your symptoms will continue to escalate and new symptoms (primarily neurological) will develop because if you have Lyme, it is infecting the cranial nerves at this point. Hearing changes, vision loss, changes in taste, and other symptoms may occcur. Jaw pain (and TMJ), and tooth pain are common symptoms of Lyme. In the early forms of Lyme, symptoms present as arthritis (again, Lyme is the Great Imitator) and the fourth most common joint affected is the jaw.

Advice...get off the steroids immediately...and get in to see a Lyme Literate Medical Doctor as soon as possible. Neurological Lyme can be stopped and the damage reversed, if treated promptly...but most doctors do not have the qualifications to diagnose and treat this disease.

You can find more help on the Lyme Boards.

Bethsheba

I'm not surprised that you're from the UK as Lyme is running rampant there...you're going to have to be aggressive in seeking treatment as your country is in denial regarding this condition. Diagnosis and treatment is possible though, as we recently had someone post on the brain and nervous sytem boards about seeing a Lyme Literate Medical Doctor and he is in the UK.

Last edited by bethsheba; 04-20-2009 at 05:28 AM.

 
Old 04-20-2009, 07:47 AM   #6
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Re: If Not Sjogren's then what is it?

Quote:
Originally Posted by bethsheba View Post
Your symptoms are typical symptoms of Lyme Disease in the early stages...and later Lyme can be (and often is) misdiagnosed as Sjogren's. Heat may help because this bacteria doesn't like to multiply/thrive in heat. If there is such a thing as a classic symptom of Lyme, Bell's Palsy (facial palsy) is it!
I believe that you have developed Bell's Palsy because of the steroids because they can make a bacterial infection (like Lyme) worse. I suspect your symptoms will continue to escalate and new symptoms (primarily neurological) will develop because if you have Lyme, it is infecting the cranial nerves at this point. Hearing changes, vision loss, changes in taste, and other symptoms may occcur. Jaw pain (and TMJ), and tooth pain are common symptoms of Lyme. In the early forms of Lyme, symptoms present as arthritis (again, Lyme is the Great Imitator) and the fourth most common joint affected is the jaw.

Advice...get off the steroids immediately...and get in to see a Lyme Literate Medical Doctor as soon as possible. Neurological Lyme can be stopped and the damage reversed, if treated promptly...but most doctors do not have the qualifications to diagnose and treat this disease.

You can find more help on the Lyme Boards.

Bethsheba

I'm not surprised that you're from the UK as Lyme is running rampant there...you're going to have to be aggressive in seeking treatment as your country is in denial regarding this condition. Diagnosis and treatment is possible though, as we recently had someone post on the brain and nervous sytem boards about seeing a Lyme Literate Medical Doctor and he is in the UK.
I would just like to state that I was on no medication before the Bells Palsy appeared.. so the steroids have not made the Bells Palsy appear! I have had no medication at all since I got unwell in August as the doctors wouldnt give me anything..

Do you still think it could be Lyme rather than Sjogrens? Lyme doesnt present dry mouth/eyes does it?

Last edited by fluffiebunnie; 04-20-2009 at 07:50 AM.

 
Old 04-20-2009, 08:55 AM   #7
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Re: If Not Sjogren's then what is it?

Yes, I definitely think it still could be Lyme...Bell's Palsy can develop even if you don't take steroids. It's just that the use of steroids will make bacterial infections that are dormant in the body occur "faster" because steroids suppress the immune system, making the body cozier for nasty "bugs" to "breed".

Because Lyme is a bacterial infection and is circulated in the bloodstream, it can affect all the systems of the body. In the first stages, it presents with cold/flu like symptoms that are mild in some people and severe in others. Then the infection can go to other parts of the body...in some it's the digestive system and those people may have excessive burping, nausea, vomiting, ibs. In some people it is the respiratory system and they may have severe chronic colds, sore throats, allergies. In some people it goes to the joints and presents as arthritis. But the longer the infection exists, and the more environmental factors (like stress, injuries, steroids) encourage it, it can spread to multiple body systems...and that's when people present with multiple chronic conditions. And finally it can move to the brain which is where it can affect the senses, balance, memory, and other things.

I was on steroids for 10 days for a very bad throat. Weeks/months?? later I developed an infection in my hand that wouldn't heal...no injury, nothing....but the hole in my hand continued to grow. Doctors didn't have a clue what it was UNTIL I mentioned that I had been treated with steroids for my throat infection. They told me that the hole in my hand was due to the steroids I took weeks/months prior.

Bethsheba

PS I just realized I didn't answer your ? about Lyme and dry mouth/dry eyes...I haven't seen any posts recently addressing this but I have seen a connection in the literature. We don't know very much about Lyme disease so I think it's difficult to say one causes the other...but I think we can say that people with Lyme have been diagnosed with sjogren's prior to their diagnosis of Lyme. I haven't followed the Sjogren's trail long enough to know if symptoms are reversed with treatment. But some people who have had Bell's Palsy and who are diagnosed with Lyme do respond to antibiotic treatment and their symptoms abate.

Bethsheba

Last edited by bethsheba; 04-20-2009 at 09:00 AM.

 
Old 04-20-2009, 09:02 AM   #8
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Re: If Not Sjogren's then what is it?

Fluffiebunnie,

Forgot my manners, , Welcome to the boards!!

Bethsheba

 
Old 04-20-2009, 09:08 AM   #9
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Re: If Not Sjogren's then what is it?

Just did a quick advanced search of the Lyme boards for sjogren's and found 13 threads...but the following post contains some info from what I have to believe is the UK. I would encourage you to read all of the posts on this thread.

http://www.healthboards.com/boards/showthread.php?t=313949&highlight=sjogre ns

You may find more help on the Lyme Boards!

 
Old 04-20-2009, 09:49 AM   #10
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Re: If Not Sjogren's then what is it?

Many thanks for your reply. I did get bitten very badly last year by something.. had about 15 bites all over my body.. mostly mozzy kind of bites which itched like mad. I am very sensitive to insect bites anyway.. but I did have one bite on my leg that just wont go away. It itched a lot at the time but I am now left with a hard red lump that is just there and is now part of my leg... what do you think?

I am in the UK, and keep rabbits and have cats.. does that mean because I have animals I might of come into contact with a lyme disease carrying insect? I buy bales of hay from a local farm for the rabbits. I dont live in the country as such.. its quite a busy town.

After the initial illness of 3-4 months, I am just left with slightly dry eyes and mouth and now this bells palsy which is starting to get better. At the time of the initial illness my memory was diabolical, was hot/cold etc.. Now I have lost 1stone in weight and still no appetite (dont mind this!) and am hotter than I have ever been as I havent needed a heater so much this winter.

Your insight is appreciated!

 
Old 04-20-2009, 09:53 AM   #11
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Re: If Not Sjogren's then what is it?

Quote:
Originally Posted by bethsheba View Post
Fluffiebunnie,

Forgot my manners, , Welcome to the boards!!

Bethsheba
LOL Thank you!!

 
Old 04-20-2009, 09:54 AM   #12
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Re: If Not Sjogren's then what is it?

[

Thank you for the link.. its hard to see how bad it is in the UK, as most posts seem from the US.. But I think I will ask my GP when I see her next week if a Lyme test can be done.. is it a blood test as I have had lots of blood tests already re: the Sjogrens testing.

 
Old 04-20-2009, 10:08 AM   #13
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Re: If Not Sjogren's then what is it?

You are at very, very high risk for Lyme. Will send another post as I see you are online now.

Bethsheba

 
Old 04-20-2009, 10:23 AM   #14
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Re: If Not Sjogren's then what is it?

Quote:
Originally Posted by bethsheba View Post
You are at very, very high risk for Lyme. Will send another post as I see you are online now.

Bethsheba
Many thanks.

 
Old 04-20-2009, 10:26 AM   #15
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Re: If Not Sjogren's then what is it?

Quote:
Originally Posted by fluffiebunnie View Post
...I did get bitten very badly last year by something.. had about 15 bites all over my body.. mostly mozzy kind of bites which itched like mad. I am very sensitive to insect bites anyway.. but I did have one bite on my leg that just wont go away. It itched a lot at the time but I am now left with a hard red lump that is just there and is now part of my leg... what do you think?
I think that lump that is now a part of your leg is what created your problems. Many people who have been diagnosed with Lyme remember no bites whatsoever! Some people do get a very distinct rash around the bite site, or on other parts of their body..but this is the minority of people. Given the number of bites you have gotten, I think Lyme is very, very possible. They used to think that only ticks carried this bacteria...now there is some talk that fleas, mosquitoes, gnats, flies, and other bugs may carry it as well.

Quote:
...I am in the UK, and keep rabbits and have cats.. does that mean because I have animals I might of come into contact with a lyme disease carrying insect? I buy bales of hay from a local farm for the rabbits.
It simply means you may be at higher risk. I live in a community of about 200,000 people, very urban...but I knew of 3 women who had desk jobs that got this disease. They think that ticks may fall off of migrating birds (we have geese/swans/etc that pass through twice a year). Lyme is reaching epidemic proportions along the heavily populated coastal areas of our country...again, they suspect the ticks fall off the birds and land on lawns and wooded areas where they can find us.

Quote:
...After the initial illness of 3-4 months, I am just left with slightly dry eyes and mouth and now this bells palsy which is starting to get better. At the time of the initial illness my memory was diabolical, was hot/cold etc.. Now I have lost 1stone in weight and still no appetite (dont mind this!) and am hotter than I have ever been as I havent needed a heater so much this winter....
You'll find many people posting with similar symptoms...some are on the anemia boards, some on the acid reflux boards, some on the brain and nervious system boards, some on the sleep disorders boards...and these people attribute their symptoms to what ever boards they are posting on (Sjogren's for instance). But if you've read the boards over a period of time as I have, you'll find men, women, and children of all ages have these symptoms and although they may have been diagnosed with "xyz" and a myriad of other conditions, many of these people find that their symptoms respond to treatment for Lyme disease.

Unlike many chronic conditions/diseases Lyme can be treated, and the symptoms stopped or reversed if treated soon enough with the right antibiotics...but there are medical politics involved so extensive reading is a must.

Last but not least, it is very common for the symptoms of Lyme to ebb and to wane...and to come back with a vengence. Too many people think they are well again, only to find that the symptoms were dormant for a period of time.

Given the risks involved (one of the conditions Lyme mimics is Alzheimer's Disease) it will be important to rule this condtion out/in as soon as possible...the earlier the treatment, the less likely permenant damage will occur.

Bethsheba

Last edited by bethsheba; 04-20-2009 at 11:11 AM.

 
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