Neurological issues can't get diagnosed/treatment

[Rgs]

Hello to all
I diagnosed with sjogren 2.5 years ago but the last year was very hard for me .
The thing is that the sjogren was very active for the hole year and it goes like that-  5/6 days I fill stubbing pain around my mouth and dryness then it goes to my eyes (the mouth dryness improves)for 3/5 days then it goes to my nerves, and it's like that rolling from mouth/eyes/nerves for one year now...!       I'm struggling to get the nerves issues diagnosed but after 4 neurologists,2 Mri's,5 Emg test, and other tests .... nothing show on test and no treatment for me
Yesterday I was ordered to a special meeting with 5 neurologist to test me and talk and decide together what to do.... at the end of the appointment they told me that nothing neurological is happening to me and there is a way that I maybe have inflammation somewhere that affect the nerves "by the way" and not in the nerves for sure.
So I was sent back to the rheumatolog to try and get a treatment for the sjogren .
My neuro symptoms are: muscles spasms,burning feets,and difficult walking properly (like accordination problem). 
Those drs (2 of the 5) supposed to be from the best in our country, and now I'm still in same situation and no treatment yet.....   would be happy to get an advice (-:
Thank you

[cccourt1942]

I fill stubbing pain around my mouth and dryness then it goes to my eyes (the mouth dryness improves)for 3/5 days then it goes to my nerves, and it's like that rolling from mouth/eyes/nerves for one year now...!       

Hi there,
   Welcome.  I know you are uncomfortable as I am...and my symptoms are at bay ...or I've become accustomed to them.  Also, almost all members here complain about one body part, organ, or other.  Good news is you are in a good spot to get information.  Bad news is we aren't doctors. 
   I imagine you were saying "stabbing" pain around your mouth.  Since I don't know..I will tell you that is what I am talking about.  My lips to don't have "stabbing" pain..but I would say it is "chronic" discomfort.  I can tell you my lips have bothered me for about 30 or so years. My late husband accused me of being addicted to Carmex at least 30 years ago.  It was another 20 years before I realized my lips were not chapped.  I realized they were dry.  They are still like that.  I use an aloe vera balm on them and for a brief moment in time (about an hour or so) they feel wonderful if not slithery.  I can't say I ever felt like I had a stabbing pain.  I never asked a neurologist about it.  I do see a neurologist for another condition....and strangely enough he does manage one of my Sjogren's conditions....so he asks if I have any other symptoms, etc.  I think he's always expecting neuropathy somewhere or the other.  I have had fleeting moments in specific body areas. 
    My first thoughts since you have met with a group of neurologists include:  a) it's SOMETHING.  (you could never have garnered that much attention w'out them believing that!) b) you haven't found theT right doctor. c) It could be something outside SjS. 
    When you read messages on this site, almost everyone is making (or trying to make) a connection of almost every symptom to the Sjogren's.  This just isn't possible.  SjS is systemic and gives us a myriad of woes.  But NOT everything.  Two of my conditions are found amonst SjS sufferers, but not ALL and not ONLY SjS positives.  One of those is likely related to another autoimmune condition (according to dermatologist and gastro). 
    Do you use any topical conditions?  If so, do you get any relief?  Are you or have you ever been on a steroid?  (low dose)  I am asking this as my LAST severe symptom was burning tongue/mouth.  It DID feel like stabbing pain on my tongue...and at the time I thought the mouth was getting referred pain.  Once I learned what it was, I found out it was my mouth too.  On THIS site ...after SjS dx, I read the view that burning tongue was neurological.  At that time I found an oral treatment which helped the pain subside...but never went away.  Didn't matter...so much better.  I couldn't taste anything.  Then my rheumy put me on LDP (Low dose prednisone) @ 5mg per day.  It took me at least 2 months to realize my oral cavity was healed.  Oh I still had the severe SjS dryness..but on large dose pilocarpine 3 times a day made oral region comfortable.
     So...all that to say I may or may not have had stabbing tongue but I never perceived the lips "stabbed". 
     I have NEVER talked to any specialist from Otolayngologist, dentist, endontist, rheumatologist, neurologist, internist, uh..i think that's all...who can explain burning/tongue-mouth.  the rheumy who put me on the LDP wasn't interested in the fact my oral region was "healed".  I say that as I believe there is little interest in the condition as not all people (meaning not enough) suffer from it to warrant any interest.  Again...why I am amazed/impressed you had that many neurologists who came together to listen and discuss the phenomenon with you.  Wow. 
     I hope you get some comfort.  There is no cure for SjS...so I am always into what makes which area the most comfortable so I can go on living my life. 
     Good luck dear...and have a good day,
Sjoldier c3

[Rgs]

Hi. Thanks for answering
The stubbing around my mouth is the immune attack on my glandular  that I can fill , and then I fill the increase mouth dryness
I know that autoimmune disease usually attack for some time and then disappear for sometime, does anyone suffer a whole year flare??
And about the 5 drs that made an appointment for me... it happened after 1.5 year that I'm complaining of neuro symptoms and nothing show on all tests, yes it's very respectable but unfortunately I'm still in same situation.... 
One more thing.... for this last year I started to smoke medical marijuana.... can it be that this flare is lasting so long because of the smoking .... to try and answer that I made 2-3 stopping smoking for 2-3 weeks every time, not really felt it's helping , only trying to figure out why the immune system is so crazy for long time.....

[Dawnmist]

Have the Neuros done a "skin punch biopsy" test, or a test that tested cold/vibration sensory thresholds?

There is a form of Neuropathy call "Small Fibre Neuropathy", which only affects the unmyelinated or thinly myelinated nerves - most commonly in the skin, and most commonly starting in the feet/legs then progressing into the hands/arms at a later point. This form of neuropathy causes burning/stabbing/bruising/broken-bone type pain because these are the sensory nerves that are supposed to warn you about temperature change and damage that are being affected. It CANNOT be found through an EMG test or a Nerve Conduction test because those tests only check the health of large nerves.

Sjogren's Syndrome is one of the conditions that are known to cause Small Fibre Neuropathy. Other conditions include diabetes, coeliac disease, alchoholism, some viral infections, some genetic mutations that affect the Sodium Channels of the nerves, vasculitis, and many more.

The Gold-Standard test for Small Fibre Neuropathy is the Skin Punch Biopsy (take a small circle of skin from ankle & thigh), but in some countries (like Australia) that test isn't available so they fall back on testing how well you can detect temperature change and vibration.

[Rgs]

Hi
Skin biopsy haven't done yet , will talk the dr about that.
Cold/vibration test have done 3 time along the way...
When you say there are many reasons for small fibers neuropathy, it means that the neuropathy will act the same? I mean same neuropathy for diabetics and for sjogren?
The all 5 drs where 100%!!!! Absolutely sure that it's not neurological issue.....
I surly try the skin biopsy here hope to get an answer
Thx

[Dawnmist]

Yes, the same sort of nerve damage is being done by each of the various causes. The differences are in how/if it progresses over time, what areas end up being affected, what pain management is needed (different causes can mean that medications that are effective for one type can be useless for another), and how it can be treated.

There currently is no treatment for Small Fibre Neuropathy itself.

What they have to do is try to find out what is causing the neuropathy, and to treat the cause. So if you were diabetic, it could be controlled/limited by dealing with blood sugar levels. If you were Coeliac, it could be controlled/limited by strictly avoiding all sources of gluten. If it was caused by an autoimmune condition, the immune system needs a kick in the pants, etc.

In about 30% of cases, they go through all the tests and cannot find the cause. Which means that there is nothing they can treat.

In all cases, the discomfort/pain needs symptomatic treatment. This is often a case of trialling a medication or group of medications until they find what works for you. All these do is mask the pain caused by the damage - but that can be enough to allow you to still work, enjoy time with friends/family, etc.

There are a few groups on Facebook for Small Fibre Neuropathy - I have found it interesting to read other people's experiences, treatments, experiments, ways to work around limitations, etc, in those groups.

[irish]

Have  any of the doctors mentioned putting you on Gabapentin?? This is an antiseizure drug that is used for neurological pains, sensory issues, etc. It does work quite well. I am wondering if you can have testing for the small fiber if they haven't already done so and the get put on the Gabapentin and see what happens.

If the neuros are impossible to work with then I would ask your general doctor if he would consider trying the drug. The drug is used by millions of diabetics for neuropathy in the feet and legs. There is another drug that works a lot the same called Lyrica but it is more expensive. However, if the gabapentin doesn't work then this one might. Then, there is the family of antidepressants that can help with neuro pain. Remember that this type of pain/whatever you choose to call it is caused by inflammation that shows up in different ways. Good luck. Irish

[Rgs]

I tried gabapentin and also Lirica-no different filling
The hardest issue for me is not the pain at all it's the difficulty walking (like balance loss) when the pain increase.
For the pain that I have I wouldn't go to the dr.
My wish is to know what exactly I have and try treating it .....
I fill that muscle spasms,foot pain,difficult walking......and so   It's neurological
It's frustrating to get treated by the best neurologists and not only one and nothing show on tests , although I'm a very responsible person some of them started to look at me like a crazy I think

[irish]

The question is, do you have balance issues without this pain. Is it weakness that can come with pain that causes the balance issues??? There are so many things that can come with pain. Have you ever asked your doctor for something for pain? You may need an assessment by a pain clinic or doctor. Sometimes we can know the why of the pain and treat the "why" but still need to treat the pain as it can precipitate other issues. This is something you need to talk to doctors about.

It can be so hard to sort out which comes first the chicken or the egg with chronic illness,. Good luck with this. Irish

[Rgs]

1-when the pain disappear , I almost not have balance problems
2-never had weakness

I tried gabapentin and lirica but not  really felt a different

Another question-  did you heard of smoking marijuana(mix with some tabac) can make sjogren flares ?
I'm trying to figure out why I'm in a "recycling" flare for more then a year ....
Thanks for trying to help (-:

[trc1962]

I have a teacher friend that recently had a bought of bells palsy on the left side of her face. The dr. put her on steroids and then advised her to go get some medical maurajuana for the nerve pain. She took her 22 year old son and the store owner helped her choose some mints. She took one and in a little bit felt immensely better and she and her husband went to church. Now she is back at work and so if her face is bothering her she can take a mint before bed and the dose is miniscule and is not (supposedly) in her system in the morning - she never takes a dose during the day of course. She tried to get me to try one for my nerve pain but I just couldn't because of all my other meds and not talking to my doctor. It is an interesting thought and one you should run by your doctor of course.