New here with questions and neuro issues! Hello and help!

[LA99]

Hello!  I am a 48 yr old female who for the past three or four years has been having  all sorts of neuro symptoms to include autonomic problems, vertigo, head pressure and headaches, "teething" pain, gum pain, all sorts of facial and oral burning and pains, throat spasms and sensations like someone is tugging or pulling at my eye muscles (like they are on marionette strings) and burning limbs and anxiety/depression.  I had a flare of neuro issues 17 yrs ago and at the time I had super low complement 4, and a high IgM.  They couldnt figure out anything.   Currently,  I still have super low complement 4 and also now sometimes low complement 3, and my IgM is still slightly elevated.   I show oligoclonal bands in my spinal fluid.   The drs are sure this is not MS.

I have had the million dollar workup including PET scans, nerve biopsies, spinal taps, 6 brain MRIs,  etc.   It did show old sarcoidosis in my chest but I don't recall ever having it.    Although Ive been tested several times before for autoimmune disease, just recently my blood showed positive for SSA. On quest labs chart, anything over 1 was positive and I was 1.2, so I guess thats a low positive?  My question is does the level matter? Is this how SS starts?  Could it just show up after years of neuro symptoms?

Also, my eyes seem the very opposite of dry - they keep tearing and burning and I can always "feel" my eyes if that makes any sense at all.  My eye dr said that are actually dry eye signs.  Has anyone had the weird "eye pulling sensation" or oral pains that I mention?  Has anyone had years of neuro stuff before Sjogrens?

I know SSA can mean things other than Sjogrens, and I don't go back to my rheum until end of March for her take on things. She won't discuss labs over the phone and she's booked solid till then....

Thanks so much for your expertise!~
L

 

[Joe S.]

I do not have much expertise but welcome to the group.

[Bigleyj]

Hi LA99 welcome to the forum,

My burning/stinging mouth and lips were one of my first symptoms.  Once i found out this was due to dry mouth my dentist told me to sip water all the time. Also i chaned my toothpaste to biotene dry mouth toothpaste. These helped and might help you. There are other medications for the dry mouth you will need to ask doctor.

With the dry eyes i believe that the liquid we have, for those who do have, is not the right consistency. Too thick. Do there are drops for this. I haven't had the other eye symtoms you talk about.

Everyone on the forum has been a great support to me.  You should get some good tips here.

Are you on any medications? As you can see we put some details in our signatures so others can see.

Cheers,
Jo. 😀

[cccourt1942]

Hi LA,
  Welcome....

I had all those uncomfortable symptoms you had over about the last 4 years before my dx.  My eyes had been dry for about 25 years.  Was advised by eye dr. to use an OTC eyedrop...and did.  My lacrimal glands had to have already hardened by then.  I haven't shed a tear in about 30 years. 

My last nagging eye discomforts were sand in my eyes and light sensitivity.  It seems I had someone look in at least one of my eyes daily for whatever was in it.  Nothing was ever there.  I'd use more drops.

Over 20 years before my dx I went thru cervical laminectomy (fusion) in my neck.  It was an ordeal.  After that, my neuro issues decreased dramatically (as I had hoped).

And last:  when I first arrived on this site, (I'm not dreaming this) I read if you have a positive SS-A , you have sjogren's.  I had positive across  ANA, and Ro and La. 

As to the tears someone else mentioned, I have heard of this phenomenon on this forum.  Seems there is more than one type of tear.  You might use search for further info...or someone who has gone thru it will help you.

And last: As women we all know and accept when one is pregnant.  You are NEVER "low positive."  Now then, if we are talking severity of symptoms, that's one thing.  If you are positive SjS, you are positive.

Back to neuro: I had the lip, oral stuff Bigley speaks of.  I also had burning tongue.  No one has successfully told me what causes it---but one theory is it is neurological.  I don't know.  Just mentioning this as you appear to be searching for an answer neurologically.

Best of luck. The dr who is holding your results without considering your symptoms is cruel.  Once you start your meds for your oral cavity, you will be left with one less nagging symptom.   Your ophthalmologist will Rx your eye meds. 

You are younger than BOTH my children.  (saying I am old)...and I recently was sent (by my neurologist) for Physical Therapy for balance issues.  I have had those neuro / middle ear issues you are describing.  I can't tell you how much it has helped.

One symptom you reach about your age is menopause.  Have you considered that?

Best to you,
Sjoldier c3

[katie1111]

At a conference a couple of years ago, I spoke with the Systane representative.  She said that tear drops have 3 layers and it depends upon which layer is the problem as to which drop will work.  It is worth trying several to see which works best.

Also, excessive tearing was my first symptom of dry eyes.  My optometrist told me that as strange as it may seem, excessive tearing is a sign of dry eyes.  I may be wrong, but I think it has to do with the fact that my tears evaporate too quickly.

Katie1111

[Dawnmist]

Your eyes produce a type of tear that is supposed to wash irritants out of the eye. The issue with dry eyes is that the irritant isn't an external one - it's due to the eye's lubricating tears drying out too quickly/not being there. This causes the reflex reaction to flood the eye and wash out the irritant but it manages to wash out some of the lubricant with it, making the irritation from the dryness worse. So it gets into a feedback loop trying to clear the eye of the irritation and in turn making the irritation worse while doing so. This feels like the eye is burning and/or has sand in it, but it's constantly streaming tears at the same time.

For the actual tear layers, there's 3 layers. A mucus layer directly on the eye itself, a water layer in the middle that comes from the top of the eye lid (the lacrimal glands), and an oil layer on the outside that is released from the bottom of the eye lid (the meibomian glands). The water layer is supposed to allow your eyelids to slide over the eye easily. The oil layer is supposed to form an oil film floating over the top of the water layer to protect it from evaporating too quickly. When you blink, you spread the oil and water films around the surface of the eye.

If the oil layer is inadequate, the water layer evaporates too quickly (especially in any wind/etc).
If the water layer is inadequate, you don't have enough lubrication over the eye.

I suspect that the burning/tearing constantly is triggered by a loss of effectiveness of the oil layer - it was my first dry eye symptom too, only I thought it was an environmental allergy and bought new pillows/bedding/etc to try to get rid of it. I didn't even think about asking my GP about it. At this stage my meibomian glands are damaged, but my lacrimal glands were still ok last they were tested.

There's different types of tears produced as reaction to irritants, reaction to emotion, for general lubrication, etc. I cannot remember all the different types. The reaction tears are not good in terms of lubrication.

[Flip4it]

Your tearing eyes indicate dry eye. I thought the same thing....."how could this be dry eye if my eyes are watering?"  Your eyes are watering because they are so dry, your body is forcing your eyes to tear.  These days I wish I was so lucky because mine have gotten horrible after many years into the disease. I  am very interested in your variety of problems that mirror many of mine. I too have  oliglioclonal bands in my spinal fluid.  I assume that you also have them in your blood serum because we both would otherwise have a diagnosis of MS.  I had a severe movement disorder (That went without explanation). I'mean glad to see that I'm not the only one that has neurological symptoms as part of the Sjogrens. I would recommend seeing an  eye specialist. I have plugs in my tear ducts....my last Shirley's test registered a big fat zero.