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.

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.

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.

Over the counter medications also cause dryness.

Benadryl (diphenhydramine), Dramamine, Imodium

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.

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.

I haven't taken anything not even paracetamol.

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

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!!

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.

I'd love to see what you've read on this. Do you have any links you can share??

That would actually make some sense for me (AAG as a stand alone) since my SSA & SSB are negative, yet my lip biopsy was positive.

They have confirmed the dorsal root damage in my case with a new MRI/MRN at Hopkins that looked at the DRG itself. It showed bilateral enlargement along with increased signal consistent with ganglionitis.

But my neuro (who is also a rheumy---who's practice is devoted to those with neuro complication of rheumatic disease) says that the AAG is the "result" of the Sjogren's attack on the autonomic ganglia and DRG. But I can see 'some' of your logic. However, the lip biopsy looks at the minor salivary glands, not nerves...so the infiltrates present are within the salivary glands itself. Of course neuropathy can cause simple dry mouth & eye (from nerve damage), but you'd have to have an autoimmune process attack the glands itself for infiltrates to show in lip biopsy. That would be Sjogren's, not AAG...unless AAG is known to attack salivary glands.

I am seeing him (neuro) on the 27th as I now have what appears to be psoriatic arthritis. He is open to discussion so I will present this 'stand alone' AAG to him. Would love to read and take some documentation with me, if you can forward some links.

Very interesting, indeed.

Depends what specialty you see. I was told the infiltrates of my biopsy did NOT affect the gland. I have seen at least 10 rheumatologists since 2000 when my biopsy was done and most of them blew off my biopsy. Some looked at it a bit more closely after my ANA went positive.

AAG is definitely a stand alone disease.

Autoimmunity can attack any organ system, but when it attacks the autonomic system, it attacks the control center of the entire body, hence causing a huge amount of symptomotolgy.

Rheumatology has yet to define many of it's diseases very well. Sjogren's is everything from sicca to AAG.

This is very interesting information for me, as I have such a myraid of symptoms with a strong family history of autoimmune disease. I have a negative ANA but positive acetylcholine ganglionic receptor antibodies. My ANA was low positive 15 yrs ago, and with mildly dry eyes & mouth with sensory neuropathy just beginning, they thought maybe Sjogren's. I took Plaquenil for about 9 yrs and ANA was always negative after that. SSA/SSB always negative. I stopped taking Plaquenil about 3 yrs ago since my nerves kept getting worse but nothing showing in my bloodwork.

Is there a way to find a neurologist-rheumatologist-autonomic specialist without going to the Mayo or Hopkins?! My doctors have no clue & don't seem to care much. I like my neuro as a person, but when I showed him the Liza Jane spreadsheet and suggested we may be missing something, he just smiled & said I've had a thorough workup. I feel like I'm wasting time, money & sanity.

My 17 yo was just diagnosed with mild POTS via a tilt-table test, I know I have this without having to be tested.

autonomic docs
 

My advice is to search out an autonomic specialist for diagnosis and treatment....I have gone that route and right now, I am in a holding pattern until I get a new neuro...my old neuro left the area. Your profile sounds to me, like AAG. I was on Plaquenil and broke out in raised red bumps, and it didn't help anyway. I haven't found anything that is tremendously helpful other than doses of prednisone that can't be sustained. :/ (I have not yet done a TNF blocker or plasmaphersis and right now I am stable enough not to mess with myself) That is not to say I have a normal quality of life, but, I am able to move around, sleep, eat, drink and be merry on occasion. I am managing symptoms and trying very hard not to take much for meds because what is supposed to help one thing always screws up something else.

Both Billylyne5 & Jenng,

Finding an autonomic specialist isn't easy...there just isn't a lot of good ones out there. I waited 9 months for an appointment to my new neuro that is autonomic specialist. They are just few and far between.

I have been to Mayo (has probably the best autonomic testing center in the country) and that's where I was diagnosed with my autonomic neuropathy/dysautonomia. But I wasn't impressed with their neurologist dept doctors at all!!

Start looking at an academic hospital. It would be best if you could get a 'team' with neuro (possibly autonomic specialist) and rheumatologist in same system.

If your insurance would cover it, consider Hopkins to the Sjogren's Center and seek out Dr. Birnbaum (he's both a neuro and rheumy---only one in the country) who specializes in treating patients with neuro manifestations of rheumatic disease. You can set up appointment, get evaluation and he will work with your local doctors for continued care options...where your doctors get his treatment advise for you. This way you only travel the one time and then your doctors know how to follow up with your care. Just a thought.

Billylyne5, you may not have the autonomic symptoms, but might still benefit from the neruo/rheumy team at an academic hospital (or the Sjogen's Center for eval) that can work together to find the underlining cause of your symptoms.

Billylyne5, you may not have the autonomic symptoms, but might still benefit from the neruo/rheumy team at an academic hospital (or the Sjogen's Center for eval) that can work together to find the underlining cause of your symptoms.[/QUOTE]

I am in the UK so our system of referrals is sometimes a bit challenging, however I have found that there is a rheumatologist that is involved in a new research program on sjogrens based at a hospital I can get refered too, unfortunately the neurologist there dismissed my symptoms as functional after a 5 minute appointment, my GP and current neuro both felt this was extremely unlikely and discounted his opinion, so it does mean joined up work between neuro and rhemy may be more difficult.
The first challenge is getting the referral to the rheumatologist.

Autonomic
 

A tilt table test can be performed in a cardiology lab, that is where my first one was done. Other tests like the QSART and thermoregulatory sweat test require special labs. The other tests I had done at an academic center with an autonomic lab. It's been over 10 years and I would like to have them redone, but, the doctor that did the autonomic test on me left for Rush Presby in Chicago. I'm on an HMO, we just switched insurance and we will see what the new neuro says.


I was seen at Wisconsin Medical College in Milwaukee. I know Mayo has a center. I am sure Chicago has something. Vanderbilt in Nashville is very good and the top guy is Dr. Vernino in Texas, in San Antonio I think.

With insurance the way it is, it is hard to get to an autonomic lab, but you could ask for a tilt table test and a epidermal nerve fiber biopsy and if those are both abnormal, that is substantial confirmation and I would think that they would refer you to an autonomic lab. I haven't had the best continuity of care even tho I was with one neuro for 7 years. A lot less was known about this 10 years ago when I developed it.

AAG is considered quite rare. Part of that IMHO is that it isn't recognized but it is still considered rare. I think they look at if you flunk the tests and if you have neuronal antibodies or a positive ANA with negative ENA and a positive skin biopsy for small fiber neuropathy.

Seen GP blood results still showing elevated liver enzymes although lower than last time. Plus my white count was a bit low again.
After discussing the increase in my symptoms my GP immediately said it sounds much more like it's autoimmune and did an urgent referral to the rheumatologist dept so I have an appointment on the 23rd Jan. My GP did look at sjogrens but she asked me what I knew about SLE and talked about that rather than sjogrens 😳 so another consultant another hospital and no doubt a shed load more tests, such fun.

Billylyne5
I am glad you got ref feral to rheumatologist. I hope you will get help with diagnosing .
I do not want to " steal" you thread, but my comments and questions are in relations to your topic.

en bloc,
I am interested in your input with recommendations of Dr. Birnbaum at Hopkins.
I wonder if I should pursue getting a ref feral up there.
You said this doctor specializes in pt with neuro manifestation of rheumatic diseases? Well, this is just what my local rheumatologist diagnosed me with. After almost 2 years of neuro symptoms, my dx was, rheumatoid arthritis with presenting symptoms as sensory neuropathy and Small Fiber Neuropathy.

I have been tested for Sjoegren 2 - 3 times. Negative SSA and SSB 3 times, negative lip biopsy 2 years ago.
Negative skin bx for SFN, but this is about to be repeated. Had QSART at Mayo, positive for SFN by sweat test, and in addition the severe symptoms.
Sero negative inflammatory arthritis for a while. Was considered for Rituxan treatment, had the VectraDA test for rheumatoid arthritis which came back positive in the mild section, so for now being treated with Leflunomide.

I have now lately had such a flare up, I had to seek up help from my rheumy who gave me a weeks treatment with Steroid.
I had joint pains, and ridiculous, increased Burning pain. I have had such dry eyes the last few weeks, I can not open my eyes in am, I have artificial tears on the night table, to use. I have also had this tightness in chest for over 2 years now. It feels like a tight squeeze that sometimes last for hours, and it often comes at the times when my neuropathy symptoms flares up, I have had all kinds of check ups, as CT ( only a couple of stable nodules in chest) PFT showed mild small airway obstruction. ( but this can be due to many things) Cardiologist has put me on small dose of Norvasc, which should help. I do have some cardiac issues, and I will hopefully have a repeat cardiac Ecco next apt in March. But they really have not come up with the reason of my chest tightness.

Is it possible that it can be due to Sjoegrens?

I am now wondering: with the increased/flareup of veuropathy burning symptoms, with the increased dryness of eyes, the joint pain and the chest tightness, should it be time to reassess and test for Sjoegren's again???

I have a apt. with my ophthalmologist at the end of this month, I wonder if I should ask for a Schirmer test?

Cyclelops,
I have never had a MRN. (I have had many MRI of brain and spine due to numerous problems, both spinal, but mostly cerebral aneurysm) But they have never done MRN to possibly study the cause of my neuropathy. I did go to Mayo. That is almost 2 years ago. They did tilt table, was negative then. They also included the sweat test which was positive. I had Gastric Emptying study which was positive for gastroperesis. Otherwise Mayo did not help me much.

I wonder how I should get the MRN done. I wonder if I should have my rheumatologist refer to this Dr. Birnbaum at Hopkins that en bloc recommended, and perhaps this could be done?

Thanks for reading

Synnove,

If you have tested positive for RA, then Sjogren's be considered 'secondary'. It doesn't always appear on labs, but you can still have the condition. There is a 'process' to get an appointment. The information is below:

http://www.hopkinssjogrens.org/

Read the bio on Dr. Birnbaum at the "Meet our Team" link on the right.

You should definitely asked for the Schirmer's test to be done. It can gauge the level of dryness/tear production in your eyes. It's a bit uncomfortable for a few minutes, but not that bad.

en bloc,
thanks. Yes, I did read up on this doctor yesterday. Would be good to see a doctor with those combined specialties !
I just have to wonder how I can get it qualified for coverage under Medicare. When I went to Mayo, I was under a different insurance, and I was lucky to have a good caseworker in the plan to get it 100 % covered. I was there for 3 days.

In general, from what I understand, Sjoegren;s can have neuropathy burning pain that is different from the typical length dependent "stocking distribution" kind of symptom.
Therefor, I thought, from what I am reading in this thread, aMRN could see dorsal root ganglia problem which verify the kind of neuropathy symptoms that is not length dependent, but proximal ??
I have burning in my feet.legs,hands,arms, face and scalp, mouth and gums, as well as a constant vibrating feeling all over. My neurologist says that is from the small fibers. But it is just left like that, no further investigations.

Has any one here with Sjoegrens experienced chest tightness?
Synnove

You should have NO problem going to Hopkins with Medicare. There is NO referral needed under Medicare. It is my primary insurance and I live in VA, so I travel to Baltimore to see him (about 3 hours each way). Medicare has always covered my care at Hopkins (most of my specialists are there). The Sjogren's Center can assist you with information about insurance coverage.

One of the many aspects of autonomic neuropathy is cardiac vasospasms. Vasospasms can cause symptoms very similar to heart attack...because the arteries can collapse briefly during the spasms and therefore reduce blood flow for short periods. This would include feelings of pressure in the center of the chest, some tightness, left arm, neck, or jaw pain, and even back pain. Everyone is different in how these symptoms present.

Any and all chest discomfort should be evaluated by a cardiologist or someone in the ER or your PCP. Sjogren's (and other autoimmune diseases) can cause inflammation in the arteries and other blood vessels and this inflammation increases the risk of plaque building up or CAD (coronary artery disease). Please get this evaluated.

en bloc,
OK, thanks for the advice re. insurance matters.

Re. cardiac issues, yes I do have CAD. I had a cardiac cath. done about 2 years ago, it showed " non obstructive CAD" ( can not remember quite which coronary artery it was), but nevertheless, the interventional cardiologist that did the cath. only did the left side. So my other cardiologist, did a cardiac dopler because he was suspecting pulmonary hypertension. It showed " left ventricle systolic dysfunction". Doc says, it is not uncommon. I have 2 or 3 different valve conditions.

My cardiologist gave me Norvasc, to act as a antispasmodic effect.

I have vascular spasm, that I believe is causing my ice pick headaches.
Sometimes the large vessels in my forearms spasm so they feels like a hard rope, and it hurts against my (I believe) ulnar nerve.
All this, in addition to vasculitis and aneurysm.

Another sign/symptom I have is Levido Reticularis, also spasm.

So, thanks for the input re. cardiac issues in autoimmune conditions, being it Sjoegren's or others, ( I do not really care any more, they all seems to be inter related) I just know that I have " something"
I will try to have some team work between my rheumatologist and cardiologist
Think it is time to have some reevaluation.
I will try to get to Hopkins, if needed
Thanks

I get spasms from the autonomic neuropathy. The only thing that burns for me now is my mouth. I don't feel much in my feet. I won't get into everything that hurts because that would fill a page. I have cardiac arrhythmias and they are different so they can't be treated, because it isn't the heart, it's the wiring of my body. I am done with the IVIG, because I am 62 and my kidneys are getting too old for that protein load, I started getting distal renal tubular acidosis and I didn't want to wreck my kidneys. I cant take the typical drugs for spasms because they lower blood pressure, which for me, doesn't work real well. :/ Sigh.

Cyclelops,

I am interested in getting a MRI/MRN. I wonder if the university medical school system where I have been seeing a neurologist that diagnosed me and being fallowed by a rheumatologist, have such procedure to offer.----I will find out.
I feel that it is important to get this ganglionopathy diagnosed or ruled out. That is how one can benefit from correct treatment plans.

Just interesting to reading your posts on AAG.
I too, have had MS like symptoms big time. Have brain lesions that "is in a pattern suggestive of MS" But I have had repeat and repeat, had LP, negative. I think they have ruled it out. I just had my last MRI, no change.

Question: Have you had any Autoimmune Aotonomic symptoms like this:
waking up at night with a rush like symptom that moves out over different body parts, accompanied by a sensation of warmth? ( !! this is not hot flashes!!) My neuros have not figured it out. Had EEG etc. They thought it was a simple partial seizure, but negative.
Now I just ignore it, though it is scary, and have come to think that it is a symptom related to my neuropathy. Could it be, do you think?

I agree with you, when it comes to the Sensory part of our nervous system, one can often be ignored because it is more difficult to diagnose

thanks for reading, and stay well.

Just reiterating that the spasms are likely autonomic in nature. I alos have the livedo reticularis and yes, that is yet another autonomic dysfunction from spasms in the medium sized blood vessels.

Nitro works well for me, but I must check my BP before using it and lay down as well...due to the orthostatic hypotension.

More questions
 

To Billylyne5
Thanks for starting this informative thread - I don't have much spare time (or brain energy) to search for answers to medical 'mysteries' so it's great when I come across a thread with lots of info. Hope you're making progress with your quest for a diagnosis. Hang in there.
To all who have posted thanks for the info, especially about AAG - even if some of it is beyond my level of medical-speak comprehension it is very useful and I will research further.

Specifically to Synnove re the "tightness in the chest" this sounds similar to a symptom (amongst many) I have been experiencing for a number of years. Some questions: Is it in the upper region of the chest - sort of lower oesophageal area? Does it come and go with no apparent reason or cause? Does the duration vary from hours to sometimes days or even weeks? Does the tightness at times feel like a burning choking that sometimes leaves you short of breath if you over exert yourself? Sorry for all the questions but it's a difficult symptom to describe. And also sorry for not being able to definitively attach the symptom to a specific diagnosis.
In my case I suspect that I may also have Sjogrens (as a secondary auto-immune condition to primary Addison's Disease (adrenal failure) - diagnosed 5 years ago this week). My father also had Sjogrens (secondary to RA) so I am familiar with some of the presenting symptoms. Unfortunately I'm in a country with a Public Health system so getting to see a specialist is difficult and if a test shows up negative - that's it! they stop looking! Have to keep pushing and looking for answers - won't go into all my other symptoms here but also suspecting some type of Peripheral Neuropathy. Had a confirmed bout of Trigeminal Neuralgia last year.
Also in regard to your other symptom "waking up at night with a rush like symptom that moves out over different body parts, accompanied by a sensation of warmth?" This sounds like it may be something called L'Hermite's Sign. It's a nerve spasm (bit like an electric shock) - often originating in the spine - it can be strong enough to wake someone from a deep sleep but goes quickly and doesn't normally leave any trace. If there are other symptoms with it eg weakness, or stroke signs definitely get it checked.
Hope this is of use to you and others.
at the same time

bluesfan,

I am sorry to hear you have Adison's. I hope you get referral to both neurology and rheumatology doctors to check out possible neuropathy and underlying causes, and to explore your suspicions of a Sjoegren's diagnosis.
I understand your dilemma re. healthcare systems, I lived in 2 countries with socialized medicine.

Regarding your question on the chest symptoms: My symptoms is described as a tightness,squeezing and heavy feeling. Symptoms are both anterior (front) and posterior (back). It is right across the chest, usually at mid point and up in upper chest area, and leaves me with feeling of heaviness in chest and tightness across upper back. Not really short of breath, but somehow having the feeling to expand the chest. Sometimes it comes from no apparent reason, other times not. Symptoms come even without physical strain. Sometimes it comes in the afternoon when the sensory neuropathy symptoms get worse. It last for a few hours. I get it 3 -4 times out of 7 days.
There is no burning like you described. ( I have other type of burning at same time, but that is something else.)
The upper chest you mentioned as burning could be acid reflux. I know doctors seem to often brush a lot of symptoms away saying " oh, that is just acid reflux"
I would recommend you also get a GI, gastrointestinal specialist.

BUT, acid reflux can play a part in the big "symphony" of neuropathy. If you have SFN, most likely there is also autonomic neuropathy involved. This can again cause all sorts of GI problems like extreme acid reflux, gastroperesis.
This also happened to me.
I needed a special GI to do a test called Mannometry ( could be mis spelled)


Regarding the suspicion of Sjoegren"s that both you and I have described in our posts: I do not know, it is my thinking that perhaps the chest tightness can also have something to do with lack of secretion for lubrication in lungs, perhaps caused by Sjoegren"s???
I know, that for me, sometimes a hot steamy shower helpes.
I also have a cardiac issue that may be playing a role in this. As en bloc described. I will discuss my autoimmune disorder with the cardiologist soon.

en bloc has desribed in his posts how many systems can get attacked from autoimmune disorders, Sjoegre"s being one of them, like the cardiovascular system, respiratory system, nervous system and others, for example the cutaneus system (skin)

You mentioned you thought you had peripheral neuropathy. I have over the time coping with my different symptoms and diagnosis that with Sjoegren"s one of the typical symptoms is severe neuropathy.
--Do you have pins and needles, burning sensation, numbness typical for SFN?
-- I also have the tingling up and down a nerve path and I know this is not SFN but from a long nerve. I have SFN in addition.

Billylyne5,
let us know when you have had your appointment with the rheumatologist!
Thanks for reading

Thanks Synnove for clarifying your chest tightness symptoms. Sounds like we're similar but slightly different - autoimmune conditions can present such a confusing overlap of symptoms differently in each individual. Hope your cardiac problems are manageable. I agree with your theory of Sjogren's possibly causing a lack of lubrication in the lungs (and possibly oesophageous?) Fits with the whole dryness symptoms typically presented with sjogren's. I was tested for sjogren's but the blood tests came back negative (which I understand is not uncommon), schirmer's test was positive for dry eyes. I have burning painful feet and numbness in the ball and toes of both feet. I also have numbness and weakness in my left hand which is slowly increasing. Pins and needles, joint pain and fatigue are constant (I also have some osteoarthritis).
Re the reflux - I was misdiagnosed with acid reflux (and treated with a Omaprezole (I think that was it) about 6 mths prior to my original Addison's diagnosis. I wasn't diagnosed until I had deteriorated enough to go into crisis. The reflux diagnosis was then dismissed and the symptoms were attributed to the Addisons. The medication never gave me any relief anyway and was stopped. I'll discuss it again with my GP when I see her next.
I had an emergency appendectomy last Oct. which caused another Addison's crisis including some neuro symptoms - as a result of this I requested to see a neurologist but so far have heard nothing re an appt.
It's good to read everyone's posts and get info to help me prepare questions for when I hopefully get to see someone. Thanks
Billylyne5 - all the best for your appt. on Jan 23. Hope you make some progress.

I doubt that an MRI will necessarily rule out or rule in AAG. If your epidermal nerve fiber density test is positive for neuropathy AND you have abnormal autonomic testing, and you are showing at least a positive ANA, it's highly likely you could have AAG. Once you are diagnosed with it, to be honest treatment right now is predominantly symptomatic. It's possible IVIG will help, it is possible Rituxan or plasmapheresis with Rituxan will help, but honestly for me, the only thing that helped was a substantial dose of prednisone and I had to wean off that back into the abyss because you can't stay on that high of a dose (more than 20mg) for life.
As far as the chest pain, I have the same squeezing band sensation that people with MS get. It's like wearing a way too tight bra. I also get esophageal spasms and that is a pretty acute hard chest pain that remits. Your pain sounds more cardiac to me and it should be addressed and soon.

As far as the odd sensations, I have everything in the book from oscillating sensations in my spine, 'hot flashes', cold chills (don't adapt to changing weather very easily) Raynauds like pain in my face and hands. My legs feel wooden and very heavy. All of the fascial tissue in my body is painful and feels bunched up. Constipation is a constant issue, as it post prandial discomfort.

To add insult to injury, I don't look that sick.

Be real careful with all medications.

Fascia and small fiber nerves
 

I found this to be an interesting read. It discusses the fascia as a location of pain. Apparently it is highly innervated.

http://www.the-rheumatologist.org/de..._Diseases.html

en bloc;

regarding DRY EYE SYNDROME:
I saw my ophthalmologist about my worsened drys eyes.
He did the Schirmer's test, and it was positive for insufficient tear production. (I forgot to get the result in mm number)
He also said he had expected that result due to my autoimmune disorders.
He also said I have plugged up oil glands.

The doctor restarted me on Restasis eye drops, and also prescribed AzaSite eye drops, and I will continue with the Systaine eyedrops as before.
I will fallow up with him in 1 month, and he said if the condition is not improved then, he would consider put plugs in the ducts.

When I see the ophthalmologist again, I will get the test result in numbers, and a copy of his notes to connect with my rheumatologist.

The pattern of my symptoms in the last couple of months have been: a flare up of a combination of neuropathy pain symptom and joint pain requiring steroid. (Medrol dose Pack) A flare up of worsening of eye symptoms like dry eyes. Then the neuropathy pain symptom subsided somewhat for a while.
Now for the last 3 days, the joint pain have worsened again.

DOES THIS SOUND LIKE SJOEGREN'S ?

(I already have RA, and vasculitis)

Billylyne, did you see the rheumatologist yet?

Thanks for reading

Synnove,

I'm glad you had the Schirmer's test and it sounds like your results are indicative of Sjogren's. The Restasis does take a little while before you notice improvement...even more than a month, in my opinion. But having him follow-up to make sure you are least experiencing SOME (even minimal) improvement is a good idea.

Your symptoms overall do sound like Sjogren's.

If you have night time eye symptoms (or first thing when you wake up), there is an ointment called Aqua Tears that your ophthalmologist can prescribe. It is used right before bed (as an ointment will cause blurry vision) and helps with severe dry eyes.

Keep in mind the Restasis can burn a little when you first start using it...this is normal...not a sign of a problem. It subsides some over time, but may not completely go away. But it's just after you put the drops in and only lasts a short time.

Hi I'm new here and this thread is fascinating to me. I have been on many forums but none where people know so much about their conditions and the scientific aspect of these!

I am still on a very slow path to diagnosis and am really anxious that my SFN will be branded as "idiopathic". I do have a confirmed diagnosis of Rheumatoid Arthritis and have spent three years on steroids and DMARDs but haven't tolerated three of these now and have also failed to tolerate Amitriptyline, Gaberpentin and now am not getting much from Cymbalta at all.

I have learned from my GP that my lumbar puncture shows high immunoglobulin - which he says confirms that my symptoms are immune mediated at least.

I have very dry eyes but no blepharitis and my mouth gets dry, especially on certain medications - but my oral hygene is good which my dentist says it wouldn't be if I had primary Sjogrgens. The neurologist said that my Sjogren's antibodies are negative and sees no purpose in my having a lip biopsy. As I have RA the Sjogren's is very normal as a secondary condition.

It sounds to me as though you need immune suppressant drugs. Hydroxichloraquine is the gold standard disease modifying treatment for Sjogren's and also for Lupus, RA and other connective tissue diseases. Unfortunately it made my face and lips swell and gave me a painful rash after a year - although it worked very well for inflammation and many tolerate it fine.

Topical treatments to keep your eyes from developing corneal ulcers are very important. I use Lacri-lube at night and Hylo Forte drops (preservative free) during the day -sometimes hourly. Keeping the mouth moist during the night is important too and avoiding sugars and keeping your mouth as clean as possible is very important. A good rheumatologist should be able to diagnose Sjogren's with or without positive antibodies but I think there is a lot of ignorance about this disease and the ways it can affect a person. Dentists and opticians tend to see it more realistically.

A good optician should be able to perform a tear break up test on you and see whether you have enough tears. A good dentist should be able to see how much saliva your glands are producing. I also have Salivex pastels to suck when my mouth gets dry - they are really good.

Venus Williams Talks About Being Vegan And Playing Tennis After Being Diagnosed With Sjogen's Syndrome
http://www.huffingtonpost.com/2013/0...n_2471057.html

Hi,
I also have been diagnosed with RA. I have a rheumatologist that has been working with me for 2 1/2 years now, trying to put a diagnose to all these different symptom I have had
My RA presented at first with neuropathy pain. I was diagnosed with Sensory Motor polyneuropathy and small fiber neuropathy by a neurologist.

I was wondering: you said you have had a Lumbar Puncture which showed elevated immunoglobulin. You also mentioned that your primary doctor was advising you on this.

What did your rheumatologist say about the LP result? ---I am just wondering, perhaps she would say that Rituxan treatment could be used for your RA. This drug has fairly recently been approved for RA. And, the good news is, that it can help for the SFN. And especially, if the SFN is immune related, then I think Retuxan would also benefit this condition as in a bonus effect sort of say. This is my understanding, but you have to ask.
You see, I was hoping ( in a way to have this, even though it is sort of heavy duty serious IV treatment ) My rheumatologist had been thinking of this.
I also had a LP, it was pretty negative.

And, there is a test for RA called VectraDA. It is a test that can monitor the effect of treatment, and it measures the disease activity by 12 protein biomarkers. --- Look it up at www.Vectra-DA.com

My last question to you, How is your SFN symptoms?

Best of luck

Sjogren's is more than dry eyes and dry mouth. I have a very high ANA, but negative ENA that is, I don't have the specific Sjogren's antibodies. I have a positive lip biopsy, which doesn't mean much to most rheumatologists. Almost all of them have shrugged their shoulders and said, "yep, there is inflammation there." Rheumatologic disease is very poorly defined other than by antibodies and most people who have one, also have at least characteristics of another. It seems silly to me, to think that an autoimmune disease won't attack the nervous system.

I have been on numerous treatments. I can't take many DMARDS due to other issues, a problem with my ATP generation cycle-Myoadenylate deaminase deficiency and folate issues-MTHFR compound heterozygote. I also have problems with my Cytochrome P450 drug metabolic pathways. Plaquenil caused me to break out in a rash that looked like a cross between measles and hives. I had IV steroids for several months. IVIG for 3 years (stopped due to distal renal tubular acidosis), prednisone for 2 years and I am weaning off, with difficulty. I have been offered Rituxan, which I didn't want at the time. I would rather try plasmapheresis first or a shorter acting monoclonal antibody if possible. I am going back to the autonomic center, and I will see what the doc is thinking. My old doc left 2 years ago and now I have to get used to a new doc. What is bothering me most right now is soft tissue issues and all kinds of fasciitis, bursitis, tendonitis and that whole thing. Not sure what this is all coming from, but likely it has something to do with the high ANA. My AAG seems to be fairly calm right now, but that can change fast.

As far as Sjogren's as a diagnosis goes, Rheumatologists have not defined it well enough. There is a Sicca Syndrome which is dry mouth and dry eyes, without the positive ANA and without autoimmune issues. Sicca and Sjogren's have been merged in the public mind so that any one with dry eyes is thinking they have a disease similar to Lupus, and that may or may not be true for them. It may be, and likely is that the dry eyes of Sjogren's is due to the disease attacking the nerves that are involved with lacrimation and salivation, not the actual glandular tissue itself. Some rheumatologists define Sjogren's as the attack on the actual glandular tissue and not the nerves, others do not make that distinction.

Rheumatology is going to be faced with all kinds of diagnostic conundrums in the future as new antibodies, including those against the autonomic ganglia are discovered.

Thus far, the best treatment I have had is from neurologists who have a handle on the neurological basis of the disease, and YES, your eyes and mouth can get very dry from neurological issues, be they medication induced or autoimmune damage to the innervation, (not sure if that would be called Sjogren's) All that said, I was told by my former neurologist, a specialist in autonomic disorders, that I had AAG. He said it was likely a channelopathy. It could be hereditary, or acquired or both. He said it could be associated with Sjogren's, which I may or may not have depending on the diagnostic proclivities of any given rheumatologist. (ANA -mine is highly positive and nucleolar, SSA, SSB-mine are negaitve, lip biopsy-mine is positive, Schirmer's tests are not considered as much evidence by rheumatologists-but mine was dry and they put in punctal plugs which fell out, dental condition- mine is bad....has been all my life, so lots of money in restorations, which is typical of Sjogren's or Sicca as well as those who are FUT2 nonsecretors which I am.)

I think as neurology and rheumatology learn more about all this, the old names for diseases will disappear in favor of a different classification system which addresses all the different antibodies and all the differing symptoms.

Just an update.
my baseline Schrimer's test was 1mm on left eye and 2mm on right eye.

My ophthalmologist has been treating for 4 weeks with Restasis and Azasite eyedrops (for Meibomian gland dysfunction)

Repeat test after 4 weeks improved the result to to 5mm and 6 mm.

I will continue present treatment, and temporarily tear duct plugs were inserted to see if they would be beneficial.
Fallow up again in 4 weeks.

Has anyone with what appears to be an autoimmune mediated neuropathy had treatment for the underlying autoimmune condition and found improvement in their neuropathy? Reading all these threads I am losing a bit of hope that this ca ever be addressed. Although my rheumy and neuro are nice people, they get one negative result anf fob me off and Im getting really peed about it. It seems toyu may all have had or are having this experience too. Is there anyone at all who had tretament for the autoimmune and their neuropathy improved? Hope is the one thing keeping me going at the moment.