Are these neuro symptoms...

[lelole]

Hi all,

OK, I hope I am not starting to sound like a hypochondriac, because I keep asking "is this sjogren's" type questions.  I am not diagnosed yet, and am definately seronegative if I will be, but with the recent 0 on my Schirmer's it looks even more likely, and I am fairly sure based on other peoples experiences. 

The thing is, I have had all of these weird symptoms over the years that I have either been too embarassed to ask doc or anyone about as they are not life threatening, or I assumed are normal.  Some of these I have now run past my OH, and he has said that he has never experienced them, making me wonder...

The two things I am wondering about, I have had on and off for the last 10 years.  It has suddenly dawned on me they may be neuro symptoms...

In my eyes, I will suddenly get a pattern of bright white lights about 1mm in diameter, and they are in a regular pattern across my vision (not floaters) and move around, then they suddenly disappear. 

Also I get these weird pains that feel like someone is putting a sharp needle into my skin, and they often are so sharp they make me flinch away from them.  Yesterday this happened on the bottom of my foot, and it happened about 10 times in succession and each time I couldn't help but squeal and move my foot.  Luckily no one could see me as I was sat alone in my car (parked!)...

I haven't asked anyone else except my OH as I don't want anyone to laugh at me or think I am weird or obsessive!  I feel strangely safe here, even though I have only been visiting a short while! 

Leah x

[Scottietottie]

Hi Leah 

I'm not sure about this but the bright light bit could be related to some kind of migraine. I believe its possible to have one without actually getting the excruciating headache. I'm sure someone will correct me if I'm wrong here!!

Being stabbed with a pin sensation could definitely be a kind of neuropathy I would say. Trouble is, if we get peripheral neuropathy a lot of tests will show up zilch - and we end up being disbelieved again. (That happend with my neuro anyway)

I know what you mean - we can't go to the doc every time we get a new symptom - especially if it comes and goes. We can note them down though - and keep track of them.

There is no such thing as a silly question in here. Ask all the questions you want. You may not get all the answers - but we'll try!!

Take care - Scottie 

[Chickpea]

Hi Leah

I'm so glad you feel you can tell us your worries.  That's what we're here for.  You're definitely not a hypocondriac so please let that worry go! 

The needle in the foot sensation is very familiar.  I've had times when I've cried out loud with the shock and pain, just as you say.  They are like electric shocks and I get them mostly in my hands and feet, especially toes.  Scottie's right that this is a kind of neuropathy but the problem with SjS is that we usually have normal EMG test results.  I have loads of cns symptoms but normal EMG and LP, and slightly dodgy MRIs.

The bright lights could be migraine without the headache.  Do you also see auras?  They could also be related to low blood pressure so that might be worth checking.  I'd mention both these symptoms to your GP so they're on your notes.  Have you seen a neurologist or just the rheumy?

Definitely write everything down, even if it's just the odd sensation or changed sensation as in numbness.  Are you dropping things?  One of the things about SjS brain fog is that we forget how odd we feel!

Take care - Chickpea

[lelole]

Hi Scottie/Chickpea,

Thanks for your replies...

I do have low blood pressure sometimes, so that might be a good explanation for the eye thing.  It makes sense.  I don't have any aura or anything, and it never lasts very long, so I suspect it's not a migraine - though I don't know much about them.

I am so glad you have had the needle thing! Well not glad, but reassured, my other half looked at me like I was a loon when I asked him!  I am not dropping things, but am quite clumsy - but think that may be related to the brain fog thing more than anything else!  I haven't seen a neurologist as I have never mentioned anythig like this to the doctor.  To be honest, I still won't as it doesn't bother me too much as it doesn't happen often enough, I am curious really more than anything else.

I am really very very forgetful now - and I do totally forget about symptoms until I feel them again.  It truly is bizarre!  I had no idea SJS caused this kind of brain fog - guess that's another tick of the SJS symptom list!

Leah xx

[whatsup]

My opinion, and I'm certainly now professional, is that you are dealing with a migraine aura.  Migraine aura can occur without the headache.  I have this condition.  I'm not sure that it has a relationship to SS but it feels scary when it happens.  Mine can last from a few minutes to about 20 mins.  A doc. told me to take an asprin as soon as I feel an aura coming on.  That is the funny visual stuff.  I also feel odd and sometimes really tired and sometimes elated before an aura.  A neurologist should be able to help you with your concerns.

[eyeamdry]

Leah, yes, I get pinprick like things all the time.  It started before my SJS diagnosis two years ago.  Mostly they are on the back of my hands.  It sort of feels like a bee sting.  Doesn't last but a few seconds.  I've also had some on my feet and today on the bottom of one foot, which is a new thing.  I usually rub the spot if I can reach it to help it go away.

But, you're not nuts.  I get these distinct things around my face too.  I think they are becoming more frequent as time goes by.  Lucy

[JannaLee]

Yeah, I also get the needle stab in my feet, mostly my big toes!  This has only started for me in the last 12 months, and I think it's neuropathy from Sjs.

I yelped in bed last night and scared my husband.

Janna

[navydad]

The EMG test are pretty useless for us,, I had three done,, all said normal, I kept asking why do my feet burn an dlegs burn all the time,, I got no answers,, then a new neuro suggested a punch biopsy,, no big deal,, it was sent out and showed siginificant loss of nerve fibers consistent with small fiber neuropathy,, so who gives me those two years back that I was missed DX;ed,, I think now its affected my sutonomic system,, cant tolerate hot or cold,, now my stmach has completely stopped working,, I drank two bottles of citrate to get things moving,, hardly anything,,, went to hospital yesterday,, it showed serverley impacted,, so what do they do,, send me on my way,, saw my ENT yesterday,, he walked in and said you look horrible,, what the heck did they do to you,, well anyway,, he checked myears,, thraot,, and sinuses,, said they look good,, and thinks the thick slimy stuff I have on my mouth is actually saliva,, so he gave me a bottle and said to spit in it when its the worst,, and have it checked for amylase, anyway,, xalled neuro today,, I think something more sinister is going on, I have lost a ton of weight, wobble all over the plac.e,. my0. mind is0. shot a0.nd since these idiots have missed ever0.y sign,, I am expected to go back to work next week,,, its only a matter of time before I become a cripple and work out of a wheelchair,, or drop dead n the job,,

[kindandcaring]

I get the shocks...Doctors dont currently take me seriously...all EMG's negative.

Its driving me and my family to distraction..it wouldnt be so bad if they stopped progressing..but they keep on going on.

Navydad

What part of you did they do the punch biop on...whose idea was that..and have you had IVIG treatment.

Cheers

[Denise]

Yes,

I too get the pin pricks..but it is a constant numbing pricking sensation on the bottoms of my feet rarely my hands , but makes them ultra sensitive to even stand, and my heals will feel like rocks,  may even set off muscle spasams in my spine if I stand on them or anyone touches them.  this of course comes and goes with the worst of the worst relapes.   and the bright lights yes. mine are white like a bright led that will flash, no migraines just weird and is more noticeable at night.

good luck, this thing is the pits.

Denise     

[Patze]

Hi Leah,

And same here too, the shocking has quieted down a bit, but the needle stabbings are something else, aren't they?!  I get them all over the body so I don't know if it's small neuropathy or just what, but it's aggravating none the less.  I know that sometimes the pain keeps stabbing for a period of time, sometimes hours, and it goes away just as fast as it started.

I too get migraine's, but I've not have the aura's or seeing lights prior to the on slaught of the pain - whew, I don't know how some folks survive having clusters of them, or having them often.

Hang in there and take care -

Patze

[TerriJ]

I've noticed seeing yellow spots on occasion.  This experience is not followed by a headache or anything.  I did a short stint on Plaquenil, but the spots showed up before that.

I also get stabbing pains on occasion.

Terri