Nerve and brain Stuff

[Justdave]

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.

[susanep]

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

[tribemom]

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.

[Billydude]

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?

[inga]

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.

[louise]

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.

[sugarbugar]

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.

[YYC_ Mommy]

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:)

[Joe S.]

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).

[Nans]

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!

[ohiolady]

I could have written Nans post.  Exact same symptoms for me.

Anna

[Chickpea]

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

[Blue Kat]

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.

[Justdave]

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.

[Joe S.]

Bring some one with to advocate for you!