Sjogren's and neuropathy

I do completely relate to your experience of Sjögren's. Mine was diagnosed last year by 100% positive lip biopsy and +ANA. Previously it was misdiagnosed as RA - which shows how it presented. I too was told by a neuro that there was a psychological/ functional component prior to Sjögren's diagnosis. My worst issues are same as yours. I'm fed up with doctors, friends, family and people with other autoimmune diseases assuming that Sjögren's is nothing more than a nuisance disease compared to RA and Lupus. Mine still only affects my peripheral nervous system but I have small vessel disease of the brain and Raynauds now too so I feel it's not safe to assume it won't keep progressing. My new rheumatologist takes my neuro symptoms seriously and I'm on Mycophenolate 2000mg - meant to be rising to 3000mg once my liver settles down after a spate of ENT infections. I'm tolerating it well but the SFN keeps flaring everywhere including my face, especially lips and gums. I have tinnitus and TMJ too plus severe autonomic problems including GI at both ends - sometimes it just seems relentless!

I would love to raise awareness for how hugely this disease affects some of us. But whenever I mention it to anyone, even my husband, they just don't know what to say. I feel it would be easier to say "I have MS" or RA than to keep sloping off to bed embarrassed to tell anyone that o have a disease that's so hard to pronounce or spell or get my own head around - let alone explain to others.. X

Oh, I so don't want to hear that! I just told my husband that my feet and legs were really hurting me this morning, and he said to go soak them in Epson salt!  He definitely doesn't get it.  I've had my mycophenolate increased from 1750mg to 2250mg within the past week due to the rise in the neurological symptoms. I have been on this drug for about 7-8 years, and it has given me back my life, until now. The jury is out on how much this will help with the neurological symptoms I'm facing now.  Do you have any trouble sleeping?  Over the last 9-10 months, I've had where I wake up as early as 3:00 am, can't get back to sleep and constrantly feel sleeep deprived.  I do try to get a nap in on these days, but that just seems to fuel this cycle of waking up way to early! 

My worst moments in the day is when I stand in front of my dresser where my meds are lined up, and contemplate taking 15 pills before I start my day or end it. Sometimes I wonder if these meds are hurting or helping. 

As far as awareness goes, I actually was hospitlized the some treatment for my Sjogrens and I actually had to educate the nurse on what it's called, what it is and does! 

Can you tell me is this site international?  I live in the United States (Ohio), but wondered about that?

Thanks for your reply, Tumtum1963....so good to have kindred spirits!

 

I am so sorry for all that you are going through. The last thing you'll want to do is add another pill, but ,,, it is easy to become clinically sleep deprived with the sleep issues you describe. It builds upon itself until one seems to have gone completely insane. I know because in '95 I had a horrific pain cycle, though I didn't know at the time that pain was what caused my sleep problems. After seeing notes on horrible things I'd apparently said in one ER -where they did nothing to help me - I called a lifelong friend and told her that I believed I had gone insane. She left work & took me to another ER where a full psych workup was done. School clinically sleep deprived due to chronic pain.

I've been on sleep meds ever since except when i, against doctor's orders, have tried going off my sleeping pills. Both times I could tell I was getting close to where I'd been in '95 so I went back on the pills. I can't use most sleep meds because of a paradoxical reaction that turns most downers into sort of speed analogs in my system therefore most sleep meds keep me awake, lol, so we use every old psych med called trazodone in the States.

I'm not saying why you're having sleep issues but I am saying this: please talk to your neurologist about the problem before things get worse. They need to figure out the cause & come up with a plan. You can also try acupuncture for insomnia. I can't afford regular rreatments, just the one or 2 freebies i can get by being the "model" in the local acupuncture schools, so i've never tried it for my sleep problems. If you're interested but have never done acup. & want to know what to expect, please pm me. I'm happy to talk about it.

Hope you get some relief soon.

I also live in Ohio. I was diagnosed at Cleveland clinic. They have a great support system

Thank you, I will!  

Yes, very blessed to be a retired Cleveland Clinic employee and now half of their doctors are taking care of me! At least I still have a little pull!

Sorry I've only just seen this reply. I have read (John Hopkins) that those with seropositive Sjögren's are more likely to develop organ involvement and Lymphoma - but those like us who are diagnosed by lip biopsy are more likely to develop neuro problems. Certainly, from what I'm reading here this seems to be born out? 

So three months on since since I last posted I've had a pretty rough ride with UTI and severe slow transit related issues that have caused much pain and bloating in my GI tract. I've been incredibly tired - actually collapsed a couple of times. So I was blaming this on the mycophenate 3g. But I see my rheum on Tuesday and there's nothing that focuses the mind like an NHS consultation (I'm in Scotland) with all its time constraints and sharp focus on budgets. I am heartily fed up with presumed diagnosis's - so far my neuro has presumed SFN and my rheum has presumed Raynauds, SFN and dysmotility and my oral consultant has presumed TMJ but there is no imaging nor planned investigations to support any of these? 

However I did see an excellent ENT surgeon a week ago - who ruled out throat cancer or nose polyps but has just sent me for a CT scan of my sinuses. Once anything sinister has been excluded for the numbness and feeling of pressure around my face - he says we can assume that this sensory stuff is all neuropathic. The nose bleeds and sore throats and horrible rancid taste are all Sjogren's related dryness he feels. I do like it when doctors explain their methodology to me properly! 

Hi Tumtum,

?Was just reading your reply, and saw you are having issues with the bloating and slow transit.  I am still fighting this as well, I think I am going on a year now, although the meds have helped greatly, some days, weeks are still bad.  There are days I just can't even eat.  I hope they are working on a fix for you!!  I have not posted for a while, as I guess I am in a flare up of everything...so it seems.  My kidneys have been good for a while, but they are acting up again, my blood work came back not so great, and blood in the urine, although I have no issues feeling wise, so they are adjusting my meds again, and will see my kidney doc next month.  And my neuropathy has doubled up in my lower legs and feet. It feels like it is going further up in my left leg, it feel funny in my knee and even in my hip.  My rheumy wants my neuro doc to do a biopsy in my legs to see what kind of neuropathy I have???  This I have not heard of before!  They said it will narrow things down.  Actually the PA said this, so I am not clear on this subject.  I see my actual rheumy in October, so I have a list going!!  Have you heard of this type of biopsy?  I ask, because I know you are more educated in these things than I am. ?  And on top of these things the fatigue has been just awful.  I have had it before of course, but I can hardly function lately, and it feels so much worse than before.  I certainly get more than enough rest, yet I drag myself out of bed, and my concentration is off, I have had to go lay down in bed, which is something I never do unless I am sick with the flu, but I just can't even keep my eyes open.  I swear, I walk around with my eyes half open, and I feel like I am in another world.  It's never been this bad.  It really does feel like I'm loosing it.  Kind of scary!  Well, I guess it helps just to type this out, get it out there, see if anyone has any suggestions.  

Just an fyi for you, protonix has helped with my bloating...and they put me on a very lowest dose of amitriptyline to help with my queasy stomach. I take that one at night before bed, (also helps me to sleep better) and I don't wake up feeling sick to my tummy.  This has helped me greatly, but like I said, I do still have a day or so that the bloat will hit me. I sure hope that stops for you!!!  Best of luck to you!!  God Bless!!

Hello deidra, I found this interesting page on biopsies for neuropathy and sjogrens. Johns Hopkins CNS and Sjogren's. Hope it helps!

I'm going to try to get this through.  Normally there would be no spaces anywhere in the address to which you referred, but direct links aren't allowed here.  It's long:

HopkinsSjogrens. 

org/disease- 

information/ Sjogrens- 

syndrome/ neurologic-

complications/

I only capitalized to make it easier to separate some words.  Try that for the info on Small Nerve Peripheral Neuropathy & Sjogren's.  The biopsy was news to me.  Fortunately they say it is a skin biopsy.  I had envisioned doc's fishing deeply for tiny nerve fibers, which sounded like, "Give me the general anesthic, NOW please."  [Yes, I've had a ridiculous # of nerve conduction studies & MEGs in 30 years.]

Thanks  aitarg for making that more clear. I know they don't allow links. I tried typing it exactly the same way I found it.

BTW..how are you? I haven't been on in awhile. Been under the weather and noticed I wasn't receiving any notifications from here. Found them somehow in spam. Probably happened on one of my ditzy days lol. Can't wait to hear back from you!

Hello - sorry to crash the party but am I right in thinking that various symptoms that can't be traced by my oral consultant, ENT, gastro  or audiologist -  might actually be part of my neuro presentation of Sjögren's? And if so should these things be presumed by my neurologist because I have Sjögren's or should they be investigating these in other ways such as skin biopsies to confirm SFN?

I find my doctors ' presumptions very difficult to process.  I had skin biopsies taken from my calves about 3 years ago (GP did this for me as I had pneumonia and couldn't travel) but all was normal. However my neurologist simply dismissed this because she said that my SFN is too diffuse to be reliably detected by skin biopsies?

Do others here find SFN in their face as well as every nook and cranny as I do? I am even blaming the rancid taste I live with 24/7 and the tinnitus on neuro pathways now as the specialists can find no clear cause in the form of excess dryness, apart from eyes. 

Ps this invisibility makes me feel such a loser where it comes to my doctors and test results. Although I do clutch onto the fact that I had paired oliglocolinal bands in my CSF and always high IgG, CRP and PV. Plus a very positive lip biopsy and ANA

Oh Tumtum, you are never crashing the party and always most welcome! I wish I had the answers for everything but I am still finding my way through and there are much more knowledgeable people here than me like aitarg and lily but here is my 2 cents worth lol. 

Personally, I think there are so many symptoms that affect out bodies I do not know how one Dr can dx all of them. The key IMHO is to do our best to coordinate them as best as possible. I am still trying to find a good rheumy. My neuro dx'ed my SJS and SFN and yes, I get it EVERYWHERE and lately especially in my face, around my mouth and eyes. Lately my arms have been getting zinged and as always my legs and trunk also. Drives me bat crazy to be polite!

As far as gastro issues I am dealing with that too. Worst ever lately with intense jolts of flank and pelvic pain. It is also at times killing my back. My joints are outta whack and it is actually hard to type today. I don't know if this is all SJS or my Fibro also. The tinnitus is annoying but the least of my problems. Thankfully I do not have any rancid taste in my mouth. SO sorry you have that! Must be horrible to say the least!

I have never had a skin biopsy for SJS. Just the blood work, and physical exams. I remember the neuro taking one look at the spots on my legs before even speaking to me about any autoimmune and saying I had one for sure. Thankfully I do not have excessive dry eyes or mouth...just at times though my eyes have been worse in the past few months. I would say my neuro has so far been the best in helping me and to try and find one you really like. That probably sounds lame and you have probably heard it a million times before but that is my advice. Also. don't put all your tests in one basket. I come back abnormal on some tests like ANA, ESR, SSB, and more BUT on most every other test I come back normal and is it ever frustrating so I have learned to take them with a grain of salt...along with many different "specialist" I see so please don't despair!!!! You are NOT a loser of any sort!!! You are a just a kind person with a horrible disease to which can't be fully figured out or treated yet. You also have to deal with all kinds of Dr's with as many opinions and there are some out there who when they don't have an answer can give up or turn it on you...which again is NOT your fault!!! We have got to be our own advocates.

I hope I was able to answer even one of your questions and help out somewhat. You have been very inspiring to me today also as I am now really going to delve deeper into SFN and learn more! Sorry for being so winded today but I completely understand your frustrations and emotions. Just don't give up and I am wishing the very best for you always!

 

Sorry slow to reply but been totally off my trolley with fatigue lately. Saw a rheum who is a scleroderma doctor a few days ago. He confirmed that I should stay on 3000mg Cellcept/ Mycophenolate and said that the chronic constipation is  probably related to slow transit neurogenic issues but has referred me to a gastroenterologist for confirmation that it's not IBS-c. He says my only option now is Mycophenolate and that the neuro damage is irreparable and there's nothing else can be done for me with this presentation of Sjögren's. I got so depressed for a few days but am slowly getting my head round it. It would be easier to have MS I feel because at least I could explain it to people. Also I find that I can't face meeting other sufferers at a local group because all they talk about is Sicca and Fibro . I have sicca too but not on the same scale as my neuro issues. But the fatigue, facial pain and general numbness and constipation are my worst symptoms for sure. X

New to this forum and just reading. They may mean a punch biopsy.  I have had that done, one in each foot and one on my outer thigh. Only a few labs do the testing. Mine were sent to NY, took about two weeks for results.  I was diagniposed with small fiber neutropathy,  test us not that bad, a bit uncomfortable. Mine were done at Stanford.  Hope that helps. 

Hi TJ!

Sorry you've not been feeling good.  How is your nose & skull?  I've been okay, finally had some relief from the bronchiectasis this summer.

I don't know why we can't type links directly in, copy them as they're written, I just know that unless they're links into this site, the Patient site, they get moderated out.  I, too, once accidentally put one of the notices into my spam folder and !kablam! no more notices for me. 

That's just how it is.

HI aitarg! Glad to hear you are finally getting some relief!!! Luckily here, no nosebleeds, Just dealing with SJS but learned some intersting things about SJS and CNS I want to explore. I am thinking that all there thoughts about me possibly having MS might be SJS with CNS. Curious to see if you can have L;Hermitt's (sp?) with this. Have a great day and hope to talk more real soon!

Hi Tumtum

Even tho we don't know what you look like, you are never invisible here!  Even when I can't get on due to hurricane "busy-ness."  I grew up where Hurricane Harvey started to lsnd, had our last family house where it finally came ashore, and live inland where tons of flooding now occurrung, tho thankfully not here now.  So every few hours I go start the siphons from the water barrels  -- 2 a.m. thus morning, again at 8 a.m. just now.  Wearing a sweater in late August in Central Texas!!!  Unheard of!!!  So That's why I haven't been on.

Tumtum, you know so much more about most of this than I do.  But There's so much yet unknown, tinnitus being a perfect example.  It may or may not have something to do with SS.  Tens of millions of people on earth have it without ever coming within a mile of Sjogren's.  The docs cannot pin that one down.  Same is true of so many things:  science just doesn't know, yet.  Emphasis on "yet."

Take a look at 

Pain Research Forum. Org

Eliminating all spaces.   There's a paper from May 2016 about why these SFN biopsies work on some folks & not on others.

I went to my clinic for something or other a few years ago & saw a different doctor.  After I said why I was there, he said, "Whew!  I thought you were going to out me through my paces on Sjogren's!"  He was so relieved.  We terrify some good empathetic docs who know they've got zip to offer us!  Have to look far & wide to find someone else so honest.

None of which helps you, I know.  This kind of stuff is precisely why the US Sjogren's Foundation pays people to do clinical research, to get studies done on things that matter to us.