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Old 01-06-2015, 03:57 AM #1
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Default Sjogrens???

I have been told by the neurologist that I most likely have small fibre neuropathy, I have told him about have gritty eyes and a dry mouth and awful joint pain,but he just shrugged that off.
When I researched my symptoms sjorens pops up every time. My eyes have got progressively worse and in the last couple of weeks my eyelids are dry and sore, eyes so gritty and dry and so is my nose and mouth.

All my bloods are normal apart from a high liver enzyme that my GP is concerned about and has been monitoring since September, stopping my medications in case it was those effecting my liver, but it's still high.

I also have developed indigestion and stomach pain, people keep telling me I am losing weight. ( my BMI is 23 so I am fine weight wise)

Does anyone know about or have sjogrens, could I have it without positive blood results?
I am feeling pretty miserable at the moment with the pain and generally fatigue.
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Old 01-06-2015, 11:46 AM #2
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Absolutely, you can have it with negative blood work. Actually, about 40% of people with Sjogren's are sero-negative.

You need to see a rheumatologist for a diagnosis of Sjogren's...or even your PCP or eye doctor. Have they done a schirmer's test for tear production?

There are MANY causes of dry mouth and eyes, (usually medication related), but with the joint pain also, it sounds like Sjogren's is a good possibility.

I have negative blood work, but my lip biopsy for Sjogren's was very positive...as was my schirmer's test.

And it is very common to have SFN as a result of Sjogren's...as it can attack the ganglia as well as small fibers.
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Old 01-06-2015, 12:11 PM #3
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Definitely not medication related as I am not taking any meds at the moment hence why my pain levels are very bad 😔
I haven't had a test for tear production, no one was interested in my dry eyes when I mentioned it 8 months ago, so I stopped asking, but it's getting worse and my eyelids are flaking and starting to crack, plus the joint pain is increasing too.
Seeing my Gp next week so am going to try and get a referal to a rheumatologist.
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Old 01-06-2015, 12:20 PM #4
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Lightbulb

Over the counter medications also cause dryness.

Benadryl (diphenhydramine), Dramamine, Imodium
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Old 01-06-2015, 03:26 PM #5
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Default A nasty rose by any name

I have and still carry the diagnosis of Sjogren's, but what I have and also am diagnosed with is Autoimmune Autonomic Ganglionopathy.

I DO have musculoskeletal pain, but it is in the fascia. I have 2 torn rotator cuffs, bilateral hip bursitis, both knees have been shot up for tendonitis, both feet plantar fasciitis, both wrists and hands, tendonitis and arthritis. Basically my fascia is very inflamed and if I do not drink like a water buffalo, I can not move as these tissues need lubrication. It's 'Sjogren's' in all the fascia.

Yes, eyes and mouth are dry. Also gastroparesis, esophageal issues, severe constipation, odd MS like sensations such as numbness of both legs up to the hips at times. Extreme fatigue or the sensation of being unable to get up without maximal effort, then when standing, I see spots and get tunnel vision. I get 'coat hanger' headaches which are migraine in quality. Muscle spasms, fasciculations, arrhythmias, raynauds like pain when exposed to cold, intractable insomnia, anhidrosis you name it, I got it. Why? Because the only organ that can cause this much misery is your sensory nervous system-autonomic nervous system...it controls it all. PLUS, most medications make matters worse. I have found the less the better for me right now. My body is so sensitive, I can feel when I take a Tylenol. Yes, I do occasionally take something stronger, but it is few and far between.

Autoimmune Autonomic Ganglionopathy is FINALLY starting to get some press. When I got my diagnosis, I couldn't believe there was a Dysautonomia as a stand alone disease. There is and it takes an autonomic specialist to find it because Rheumatologists don't do neurology. My ANA is positive, and I believe that the positive ANA I have is because the test is picking up the neuronal antibody that is attacking my small fibers and dorsal root ganglion.

I don't think I have Sjogren's Syndrome and for a long time I did. Then the doctor said I was way beyond the scope of that. So, I'm OK with the new face of the old symptoms. For me, it's AAG. To help others understand, I tell them it's like Lupus but attacks the autonomic nervous system.
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Old 01-06-2015, 03:39 PM #6
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Default A bit more

Also, depending on the specialty you see, that is what you get diagnosed with. If you don't have a +ENA, even with a +ANA, rheumatology tends to not want to deal with you. If you see a neuro without a background or interest in autonomic disorders, even with a + ENF biopsy they don't do much for you. I do think that if you can get to an autonomic disorders center, it helps. If you have autonomic testing and it shows abnormality, and you have a + ANA, it's pretty evident that you have an autoimmune neuro condition.

All possible diseases must be ruled out so a treatable cause isn't omitted.

Treatments for AAG, are very similar to treatments for autoimmune disease EXCEPT for drugs that can harm the nervous system, such as methotrexate, azothiaprine etc.
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Old 01-06-2015, 05:12 PM #7
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Quote:
Originally Posted by mrsD View Post
Over the counter medications also cause dryness.

Benadryl (diphenhydramine), Dramamine, Imodium
I haven't taken anything not even paracetamol.
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Old 01-06-2015, 08:51 PM #8
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About 6 years ago I also had high liver numbers on my 6-months labs, and my doctor, a highly respected endocrinologist who didn't like supplements, decided it was probably those dang vitamins I took. He suggested I stop taking them for a while and retest. I didn't stop but did retest and the numbers were some improved so he thought I was on the right track. However, a week before Christmas in 2010 I had to have an emergency gall bladder operation. The pain was severe--don't wait too long to find out why those liver numbers are out of line. Joan
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Old 01-06-2015, 10:43 PM #9
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Quote:
Originally Posted by cyclelops View Post
I have and still carry the diagnosis of Sjogren's, but what I have and also am diagnosed with is Autoimmune Autonomic Ganglionopathy.

I DO have musculoskeletal pain, but it is in the fascia. I have 2 torn rotator cuffs, bilateral hip bursitis, both knees have been shot up for tendonitis, both feet plantar fasciitis, both wrists and hands, tendonitis and arthritis. Basically my fascia is very inflamed and if I do not drink like a water buffalo, I can not move as these tissues need lubrication. It's 'Sjogren's' in all the fascia.

Yes, eyes and mouth are dry. Also gastroparesis, esophageal issues, severe constipation, odd MS like sensations such as numbness of both legs up to the hips at times. Extreme fatigue or the sensation of being unable to get up without maximal effort, then when standing, I see spots and get tunnel vision. I get 'coat hanger' headaches which are migraine in quality. Muscle spasms, fasciculations, arrhythmias, raynauds like pain when exposed to cold, intractable insomnia, anhidrosis you name it, I got it. Why? Because the only organ that can cause this much misery is your sensory nervous system-autonomic nervous system...it controls it all. PLUS, most medications make matters worse. I have found the less the better for me right now. My body is so sensitive, I can feel when I take a Tylenol. Yes, I do occasionally take something stronger, but it is few and far between.

Autoimmune Autonomic Ganglionopathy is FINALLY starting to get some press. When I got my diagnosis, I couldn't believe there was a Dysautonomia as a stand alone disease. There is and it takes an autonomic specialist to find it because Rheumatologists don't do neurology. My ANA is positive, and I believe that the positive ANA I have is because the test is picking up the neuronal antibody that is attacking my small fibers and dorsal root ganglion.

I don't think I have Sjogren's Syndrome and for a long time I did. Then the doctor said I was way beyond the scope of that. So, I'm OK with the new face of the old symptoms. For me, it's AAG. To help others understand, I tell them it's like Lupus but attacks the autonomic nervous system.
I have to ask...if you have AAG, then what is causing the 'autoimmune' aspect, if not Sjogren's? Do you have another AI disease? I too have AAG, but have been told that Sjogren's is the autoimmune component that has attacked the autonomic and dorsal root ganglia...which in turn causes the dysautonomia and PN.

I do think the definition of Sjogren's will change in time as it's scope goes way beyond what is typically associated with Sjogren's. About time they stopped tagging dry eyes and mouth and started talking about the true damage at the cellular level that affects every organ and connective tissue. Hard to find a doctor that understands what Sjogren's really IS.

It's been a long time since we discussed this...good to have you back!!
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Old 01-07-2015, 06:15 PM #10
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Autoimmune conditions span the gamut. AAG IS the underlying disease.

It took me a long time to get that thru my head.

AAG is a stand alone autoimmune disease.

The elevated ANA is caused by a yet unidentified antibody, hence a negative ENA.

Dry eyes and dry mouth are the product of a malfunctioning nerve to those organs and it will show up as lymphocytic infiltrate in a labial biopsy....because the nerves are undergoing the same inflammation as is present in connective tissue disease.

I have read that AAG is the sensory version of ALS (which is motor.) ALS affects the anterior horn, AAG the dorsal root. One is motor, one is sensory. Totally different diseases, but similar in that they are a degeneration of the nerve roots at the spine. ALS isn't secondary to any other disease, it just is. Same with AAG. It just is.
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