Wanted to see if I am alone here, or this is common.
#1 biggest pain of the disease for me is brain and nerve stuff...
I have...
Nerve stuff
Tremmors
Buzzing and electric jolty feelings
tingling hands and feet
twitches
poor balance
on the brain side
Brain fog
Speech issues - mostly wrong word stuff, but sometimes can't find a word, or stutter
Memory.. did I say memory..... oh yeah, Memory Short term mostly
Concentration and focus - esp with organazational tasks
Anyone have this stuff on top of the dry eyes and mouth...
I think it bothers me the most because it makes me look unintellegent.. I hate that.
Welcome-I have sometimes the electric shocky feeling jolts down one side of my head, and the memory problems(short term). It makes me feel that way sometimes too, but then I know it is just the sjogren's I have that is doing this to me. I hope you get some answers, and the correct treatment.
susanep :)
It's like you are telling ME the symptoms I have. Weird! Some days the brain fog is & not being able to find words is better than others. I tingle, have twitches, and have poor balance most days.
As a rule we are all different. I have the HUGE parotid glands, CNS stuff, fatique, different neuropathies. Currently having weird heart things. Over the years whenever I complain of this I get tested and all the results show fine. I just think the autonomic neuropathy goes haywire and does things to my heart but when I'm tested of course it doesn't show up. Lately I can't stand for more than 15 minutes before I get all sweaty and my heart races and I get completly weak and have to sit down. My GP says its just from having a panic attack because of my hypertension from high blood pressure. But, why would I have a panic attack when I'm not doing anything panicky?
I do have odd sensations, like loss of balance, loss of proprioception, involuntary movement, memory loss, severe restless leg, all kinds of stuff.
I read your history, and without posting every issue, mine is very similar. I wonder what pattern your ANA showed...kinda curious since you have an elevated ANA and confirmed neuro issues?
The neuro stuff has been disabling.
Yes I also have tremmors and twitches and I feel like my balance is very off. Sometimes I feel like I am walking like i'm drunk. I also have trouble finding words but I thought that was just my age. I also have had trouble with pinched nerves . I had carparel tunnel surgery and cubital tunnel surgery along with trigger finger surgery . I continue to have pain in my elbows and numbness in hands and feet. I am pretty much use too it.
WOW! I am so glad to know I'm not the only one with these struggles! I too dislike the brain stuff the most. Especially when I can't find the right words to say. The other day I couldn't remember what a fork was called! Frustrating. If you find ways to help please let me know. Oh I also avoid stairs now because of how weak my legs are. I do have major motor nerve neuropathy though.
Hope it gets better for you.
Quote from: Justdave on January 25, 2010, 05:22:37 PM
Wanted to see if I am alone here, or this is common.
#1 biggest pain of the disease for me is brain and nerve stuff...
I have...
Nerve stuff
Tremmors
Buzzing and electric jolty feelings
tingling hands and feet
twitches
poor balance
on the brain side
Brain fog
Speech issues - mostly wrong word stuff, but sometimes can't find a word, or stutter
Memory.. did I say memory..... oh yeah, Memory Short term mostly
Concentration and focus - esp with organazational tasks
Anyone have this stuff on top of the dry eyes and mouth...
I think it bothers me the most because it makes me look unintellegent.. I hate that.
I have all the nerve stuff that you mention. I find it the most scary of my symptoms. You are definitely not alone:)
While I do not like welcoming people to the site, I am glad you found it and the help it can provide. (I do not like hearing about the increased numbers).
I do get pins and needles in my toes occasionally and sometimes the ends of my thumbs and fingers (usually the pointer) go numb, but my short-term memory loss and brain issues seem to happen every day. It IS frustrating not being able to find a word or totally lose my train of thought in the middle of talking to someone. It is not uncommon for me to forget a conversation I've had just minutes before (but I remember when reminded of what was said) but have totally forgotten conversations from the day before. I think my family sometimes thinks I'm losing it. I guess I am!
I could have written Nans post. Exact same symptoms for me.
Anna
Hi justdave
I'm another one with mainly central nervous system SjS issues - everything you mentioned plus more. Do you get odd cold sweats either on exertion or just out of the blue? What about neuro connections in your digestive system?
Have you been to see a neurologist? I arrived at SjS via the neuro and a failed MS diagnosis - you can read more of my history on the staff info pages. It took the rheumy 10 minutes to diagnose SjS - I'd never heard of it! Most doctors I meet don't know about the possible cns involvement.
What treatment are you on? I found that steroids helped with a lot of the tremors and tingles, but not before I'd done odd things to my leg and back muscles by trying to control the tremors in my legs. Immunosuppressants are usually the next step - Methotrexate, CellCept and Cytoxan. They can slow the progress of SjS and therefore the development of more cns issues.
Visit lots and let us know how you are doing.
Thinking of you - Chickpea
I have the pins and needles in my hands and feet and the last couple of days during a particularly bad flare-up my whole body has felt like one raw, exposed nerve. Aside from occasional fogginess, I thankfully don't have a big problem brain-wise.
Yeah, many Nuero appointments... all the same..
Me on one side of the room, them on the other.....
"Well, the good news is that nothing showed up" He would say "So if it was seriuos it would."
meanwhile I am on the the paper coverd bench looking at my socks wishing I was anyplace but there feeling like a fool.
I have some very caring doctors, two rocking Rhuemy's that have been comming up with ideas and they are working. I am not a Nuero fan, I have been to 3, 2 were indiffernt, 1 was down right insulting. all found nothing.
My rhuemy wants me to see a specialist nuero that treats autoimune diseases. But it is so hard walking into a doctors office thinking.. am I going to be able to prove this? do I want a 4th. I wouldn't even considerate it but the doctors I respect most think it is very important.
I made an appointment....
I guess my biggest complaint is the nuero stuff doesn't make me feel sick
so much as it makes me feel broken.
Bring some one with to advocate for you!
Hey JustDave -
Oh yeah, that sounds familiar. My neuro symptoms are random muscle twitching, mostly in the upper arms, but occasionally in the leg muscles, pain in finger tips, sometimes pain/shock feelings in the arms and legs.
But the brain stuff! Before most of this stuff kicked in, I had the sort of work where I had to keep a lot of details in my head, make a lot of small decisions a bunch of times a day, and was generally considered "sharp". Now I'm having problems taking information in - to the point where I sometimes ask my partner to read something to make sure I understand right .
I have a hard time working with numbers - now I don't mean calculating pi out to a bizillion places, I mean things like copying my credit card number down correctly, punching a phone number in, figuring out how much to tip. Can't focus - my brain pops all over the place. I start looking up one thing, and then I have to go back to my notes to figure out what it was I was working. Lose words left and right - and I used to work as a writer, and was a half-way decent public speaker. Can't type well either - I make all sorts of typos. Mixed up words, or leave them out. And I used to make money as an editor too.
My rheumy doesn't quite believe this, though I'll give her credit - she is trying to figure it all out. I may print this thread to give her a feel for the consensus out here that this happens. What she currently has me going through is two sets of tests - she's sent me to a sleep specialist to make sure I'm getting good sleep. (Answer: no, but I still need to do the sleep study. Contributing factors are a snoring partner, pain, and worry.) The second test is to someone who is a neuropsychiatrist. I haven't been to that yet, but I get the feeling this about documenting how much cognitive function I have/ or have lost.
I guess that makes me wonder if I should also see a neurologist.
Hang in there - this stuff is hard. We all seem to know what you're talking about, if that's any help.
Wow, this is my first visit, and it's ALL here. It's amazing how the worst thing isn't so bad when you're not alone.
I've been diagnosed with Sjogren's for 8 years, and with Interstitial Cystitis for just over a year (IC is another autoimmune manifestation, but your bladder is attacked).
But all of Dave's symptoms and MORE have been creeping up on me, until I finally saw a neurologist. Still waiting for the spinal tap (which was Tuesday), but the doctor's tentative DX: demyelinating neuropathy and ataxia. My EEG looks like I'm having seizures, but I'm not (well, I don't notice them if I do),
But the shocks up the back of my neck in series of 3 are almost constant, even when I don't move my head. My headache is constant. Dizziness, eyes out of focus, losing the right word at the right time, I just have them all. Leg cramps, too. It is endless.
I ALSO have had an episode of hypomania, which is one of the neuropsychiatric symptoms. Has anyone else had that? or other psychiatric symptoms?
Three MRI's and 2 CT scans show NO brain tumor or stroke. YAY. But I have frontal lobe white matter gliosis, does anyone know about that from first hand diagnosis?
I imagine that MS is on my Doctor's mind, but it seems to be that pSS CNS has to be more right. Meanwhile, I'm on 1500 mg Depakote and can barely MOVE, and am nauseated.
My question: Is there remission for Primary Sjogren's Syndrome Central Nervous System? Does IVIG work? What about prednisone and chemotherapy.
Will I ever get my life back?
Hi Carolina :)
Welcome to Sjogren's world. I'm sorry - I don't have any answers for you. I don't know much about neurological manifestations but I just wanted to say welcome.
Take care - Scottie :)
I know exactly how you feel,, I am convinced that my GI tract is involved, already know I have sensory neuropathy,, I just got off the phone with the Neuro that did the biopsy for the neuropathy,,next appt is June 10th,, seems i lose ground everyday,, wife says all I do at night is sweat,, never run a fever during the day,, I have seen my body temp drop to 91 when I have come inside after being out only a feew minutes, I am beginning to hate all doctors,, yes I have been told ,, well theres nothing serious going on,, WHAT?,, losing control of my body is not serious,, and dont hand that fibro tag on me, ya, I like to walk like a duck from the pain in my legs,, ya,, fibro caused all these red dots to appear on my hands and feet and then peel,, my guts make noise like there being strangled,, kept telling them,, but no one listened
On Monday I saw my GP,, he had me get a abdomen X-Ray,, I was first on tuesday to get it done,, I asked the girl when would the doctor get the results,, oh by late tuesday or Wednesday at teh latest,, of course no results yet,, and he is associated with this clinic, Gotta love this clinic,, you go in,, wait for girl to get off phone,, she looks at your paperwork,, ask if you have been here before,,Ah yes I have,, take your name,, lookk it up on computer, ok,, your in the system,, she takes paperwork,you fill out more paperwork, go to xray dept,, ring bell,, wait Half hour,, some other girl comes out,, she says,, I didnt hear the bell,, you should have rang it again,, I told her,, it says only ring once,,well get the xray,,, fill out more paperwork,,go back to new girl who checks you out,, ah,, but your not done,, you have to go back to original girl and have her go over ALL paperwork,, then your permitted to leave,, 2 hours for 5 minute xray,,
I was approved for short term disibility from work yesterday,,,,, I have been waiting on this, now I am considering going to Mayo,, filled out a online appt request,, and have a friend who lives in Indiana who is going to shore up what we need to do to get tehre and finnaly see whats going on,,
I do not like being told in the paperwork that I may have SS,, Lupus,, or scleredoma,, I want to know why my nervous system is croaking,, I want to know why my stomach is such a mess,, Yes I;m venting,,and I wish I wold experience a flare, at least with a flare youcome out of it,,
About them sitting over there and you sitting over here,, been there done that,, al of them spouting off some kind of explanation why all this is happening,, but with no real evidence backing it up, just speculation, I have always in my life wanted to know why things work or why they break,, seems my doctors cant get to the bottom of anything, they all cant be that bad,
My hands and arms burn so bad that 9 I have to get stuff out of the frig with gloves on,, same with freezer, i dont even think about going out on days like this() 5 degrees,), and there were times I would work outside all day in this cold and it would never bother me,, YOU have to be your own advocate,, but there comes a time when you almost run out of options,, I mean you call your doctors and they never return calls,, ER rooms cant do much except run some basic blood test whichreally dont show much when the root cause is hiding pretty deep somehwere,, I;m tired of taking meds that dont work,, so I;m not taking anymore
Supposed to get a seriod shot next week,, my gp even said I dont now if thats going to work,, then they discussed a TENS unit,,, nah, I woud rather suffer with numbness and pain then to have another surgery to stuff something up my spine,, Lord knows last couple of surgerys left me with MRSA,, and Picc lines installed,,
I see my rheummy next friday,,, hes supposed to be the expert on scleroderma,, so if I have it,, he;ll know,, Dr. Thomas Medsger, Pittsburgh,, hes about the only one I really trust,, he knew what was going onwhen I explained the tingling,, he said neuropathy,, heck it took the neuros a year to figure that uot,, I just loved going through the EMG test,,, getting shocked repeatdly,, andnothing found,, took a smart neuro to do the punch biopsy,, but I could have killed her when she said the sural nerve might tell us more, it told us nothing but left my left foot numb on the side,, I could write a book on all this,,
Now I;m getting tingling up the groin and buttock area,, who knows what that is,, Sorry for hijacking this post,, I;m just very Pi^^^ed today
Justdave
ME!! I have almost everything you have. I also have been waking up at night with my hands asleep or numb.
hugs harlin
Sounds like me too.
I already have polyneuropathy and an Arachnoid Cyst in my brain. At my last appointment, I failed the Tandem Walking Test (one foot in front of the other). Was doing okay until my left leg became possessed and shot out and did some crazy manuever. Walking around like I'm drunk and running into things has become common. Also, tend to catch my feet in rugs and catch myself holding on to things to stay upright. My back hurts, constant body pain and my body is stiff. I heard the nurse say I have Sjogren's, Arachnoid Cyst and ataxia when she called for the Brain MRI appointment. I wasn't aware I had ataxia. Looked it up on the Internet and it said lack of muscular control, coordination or something like that. At this point I think we are looking to see if the cyst is growing or if this is caused by the neuropathy. But it looks like there are numerous causes for ataxia, including MS and Parkinsons Disease. Will have to wait for the results at my next appointment. We will also test my B12 levels, if I haven't had them tested recently.
Nerve stuff
As mentioned in other posts, I am trying to go thru testing to figure out what is going on with me. Even though I have had many of the symptoms for years, it was two weeks ago, that triggured me to make an appt with my doctor. My brain fog has gotten so bad that two weeks ago, I totally lost my memory from moment to moment and starting trembling. The dryness symptoms I have had for at least 10-15 years. I just started getting what I call "electical vibrations" in different parts of my body. When it first started happening, I thought I was sitting on my cell phone because it feels like my cell phone vibrating. It doesn't hurt, but is very strange. With the brain fog, sometimes I can't hardly get words out either and sometimes I forget people's names that I have known forever, my mind will just go blank. It is very annoying and has caused me to rethink one of my jobs and whether I am even competent to do it anymore.
Hey Lighthouse, There is condition called drop foot, has medical name. You might google it and find out more about it. Good friend has it and her right foot causes her to stumble 'as if drunk.'
I thought the threads about the inabiltiy to deal with numbers and such interesting. I've noticed as the years go on I have less and less ability to deal with numbers and such. I never was good with calculating but have become so bad at it that its very embarrassing. I wonder if there is any association with that part of the brain and Sjogrens.
About numbers. I used to work in accounting and I could do numbers in my head quickly now I can't even do simple math without feeling overwhelmed. Sometimes I feel like I've become dyslexic or something because I make my question marks backwards and I have trouble with "left and right". It's very frightening to say the least. I lose my words frequently and it seems to be a transient thing, some good days some not. I use a timer every time I cook so that I won't forget that the stove is on. Sometimes I carry the potholder around as an added reminder that something is in the oven. I hate this. I used to have an IQ now I feel defective.
I dunno, i thot i would do one of those one by one responses but there r so many here plagued by neurological symptoms... yeesh...
Demylenation, has to b one of the uglier words, Carolina, any patient hears from a doctor (stroke is something i fear the most ala The Diving Bell and The Butterfly). It is part of my world, and i see know that my daughter's moved back with me, it is part of hers too (i just can not say that word to her, no matter how much that lovely girl makes my blood boil at times!)
Success of a pharma deployment depends entirely on the unique individual...
Insomnia seems to rule the roost in neuroville, warmwaters; it is a wicked plague, that one, when the angels leave u alone night after sleepless night, posting zero after zero (sleepless hours) on insomnia's scoreboard... where there is protracted insominia brainfog inevitably slides into its place round the auto immune camp fire...
That 'vibrating cell phone' issue had me so confounded at first i just couldnt believe my iphone wasnt malfunctioning in some manner designed to taunt me, cos when i went to answer, pull it out of my pocket, 'they'd' stopped ringing, and inexplicably, there was no record of the call.... very strange days indeed...
And justdave i guess u see ur not alone, and uve probably found a little home away from home... hopefully uve just signed on for the sample pack and wont end up buying the full meal deal...
Every once in a while i think about my med history, i think about other (i know, on boards, folks u see at docs office or in hosp. etc) but i especially dwell on the ctd/ai stuff and try to put it all in a blender with the readings/research ive done over the years and wonder, 'Why r there so many frustrated patients, and so little in the way of help (and i am talking about non-toxic help here)...
If i had a say in redesigning the way medicine was done this is what i would do differently
1) invest very very heavily in super computers (for data mining, for immediate up-to-date world wide research access etc
2) wean researchers off animal studies and instead focus on human dna modelling and research (and treat it like a 60s race to the moon, but cooperative rather than antagonistic...
3) From birth onwards, every five years we should visit the nurse so a vial of our blood can be stored for reseach or possible future explanation
4) A medical degree should be a five to seven year license, requiring each physician to, y'know, do some upgrading and be examined (they are after all not dealing with stuffed animals after all...
One of the most interesting proposals from medicine recently was the revelation that MS might be a vascular disease, or be somehow subsequent to an insult from some unknown previous vascular injury... now i wonder how many folks looked at the association between MS and Raynaud's, till this Italian researcher came along trying to solve his wife's MS? ... kinda storybook in a way tho ;-)
and navydad, as someone whose been dxd with those little beauties, i hope the mayo serves u well, uve earned some relief...
wish u all well
Wow! This is quite a thread. As I read everyone's posts I wondered in vain what diagnoses and meds you all have.... :-\
Your "profile" awaits you! :)
Hi JustDave - I realy connected with your post about a 4th Neurologist. I just saw my 4th (reluctantly) and it is heading me in the direction of getting a SJS dx as well as some other things. This time, I saw a Neuroimmunologist and I think that made all the difference. I hope your appt goes well.
Best,
-Q
OMG I love you guys.
I am not making my symptoms up, not going insane. I have all those symptoms. Oh man. I am so happy now.
I have the electric shocks ,ants running under the skin in my legs, and the feeling of wearing a sock on my foot. I also have foot pain all the time.
The brain fog thing is mad. I think of something I have to do, just as quickly I forget what it was. No point sitting there trying to remember, NEVER going to happen. People ask me about things that happened some time ago or yesterday. I nod and smile but have NO idea what they are talking about. I have to write lists. If it is not on the list, no hope of remembering. It is really like having the lights on but no one is at home.
Stay out there friends
This a mad disease but you are never alone. Always a new symptom to keep us entertained.
CYA
Jazza :D
Oh my this thread just sets off my patience. Of all the things Sjs has given me this is the worse.
My balance issues have progressed so much over the last year or two that it is past scaring me. I have just made up my mind to deal with it and if it gets to bad then I will deal with that too. I too am sick of the doctors telling you "everything is normal" and you find yourself sitting or laying on the floor for "no reason". ::) Or you turn to go right and your left leg doesn't move and down you go. Nay, absolutely nothing wrong with me, I just like laying on the floor, looking like a fool. :-\
My husband teases me about all my new "dance steps". He always asks "Is Fred teaches you a new step". (Fred, as in Fred Astaire, the dancer). At least when I yell "Fred!! knock it off", it sounds a lot better than (*&%$#@) ;D
Take care everyone and don't let this disease win. Never lose your sense of humor and fight!
Hugs, Pooh
Again,, all these issues and were not taken that seriusly,, I know alot of people who sauffer more then us,, but were sufering no less