Motor Neuropathy Anybody?

[Crabcakes]

Before I lost all this weight, I wasn't to concerned with the falling, I had a lot of padding.   

  A good excuse for me NOT to lose weight!

[texasgal]

Thanks guys for all the comments.  I am supposed to schedule an appt with a rheumotolgist I guess.  I've been twice over the years and they always ask me "why are you here", as if I'm making all this up.  The neurologist told me that since SJS is a connective tissue disorder that they usually dont treat it unless you are really advanced because the medication lowers your immune system.

As far as dizziness.........OMG.  Two days after I had the MRI on my brain, I woke up and the back of my head was numb. I sat up and my world went to spinning and I felt like I was falling down a roller coaster.  I guess this is considered vertigo.  According to my neurologist, vertigo is not a symptom of SJS.  He seems to think its an inner ear infection and will go away.  HASNT YET!  Then again, he thinks my left hand is aching and going numb due to a minor pinched nerve that will also go away.

I lay down in the evenings because I'm just exhausted but i actually hurt worse when I lay down.  My left arm aches and aches and my numb fingers feel like my whole hand has been crushed.  I'm beginning to wonder if my neurologist is just pinning all this on SJS because he's lost for answers.

-Lisa

[navydad]

I dont know how you all do it,, I;m ready to take the bridge from all the pain I am in,, I;m sick of sinus infections -(just got off phone with ENT), and the horrible numbness and pain in all the extremitys,, arm pain,, leg pain, not just leg pain,, it feels like the muscles are being torn off the bone, sick of doctors that dont take you seriously,, hate to even go to bed at night,, I know i;m in for another night of coughing, and pain, I cant take the heat,, heck i can barely walk,, a stomach that has pretty much refused to work,, had one doctor tell me last week,, your gallbladder needs to come out,, I;m not about to get cut up wheni can barely function,, and I know thats not a part of the problem,, I have some gull stones,, but that doesnt account for all the symptoms,, I just dont know how you do it,,

[texasgal]

I was just sitting here thinking the same thing NAVYDAD.  I'm just wondering if this is what I have to look forward to for the rest of my life or will the symptoms come and go?  Everyone is so positiive and talks about keeping a sense of humor.  I consider myself to be a pretty funny person but I'm just in too much pain at the moment to find humor in anything.

-Lisa

[Kewanee]

Sjogrens can affect your ears and I've had countless bouts of vertigo. I'd say between it's ability to affect our ears and our brains, Doc. should be more informed.

Maybe check this site out. I'm sure I've seen it here but then I have the book as well.

Kewanee

[Poochie]

Hi Kawanee,
I guess I spoke to soon.  I woke up Thursday night/Friday morning when I rolled over and thought the world kept going.  I tried to sit up because I felt like I was going to heave.  Next thing I knew, I hit my hubby's bureau and wound up on the floor with my dog licking my face.  Yep, vertigo.  Hit me out of blue and with a vengence. 

I have no idea what started this round, I wish I could blame it on something or someone (Salsen you started it. )

I'm hoping my doctor can give me some Meclizine to knock it down quickly on Wednesday.  Until then I'm using my neck vibrator and praying it will let up.  Between "Fred" (my PN) and the vertigo, my hubby is having a fine time trying to keep me upright.

Good luck to all of you with this horrible disease.  It just never seems to quit giving.

Hugs, Pooh

[Dolly Dimples]

  Oh, all you poor peeps having such awful problems, is so distressing.

What on earth can any of us say that will ease your lot!

   This darn complaint is so  tough, and seems it's a never ending giver!

     I can only I am so sorry for all of you, and pray that soon we can find the miracle that we are all seeking.

        Pooh, I am so sorry that the dizziness has reared it's ugly head  on you again..
       I have had a couple of spells in the past, but it panics me,  I pray it stays away ..
                                         Bless you all, Dolly x

[Babs659]

Yodeb, not exactly dizziness but whooziness.  Not like my head is spinning but swimming, instead.  Drives me nuts.

[Kewanee]

Hi Kawanee,
I guess I spoke to soon.  I woke up Thursday night/Friday morning when I rolled over and thought the world kept going.  I tried to sit up because I felt like I was going to heave.  Next thing I knew, I hit my hubby's bureau and wound up on the floor with my dog licking my face.  Yep, vertigo.  Hit me out of blue and with a vengence. 

I have no idea what started this round, I wish I could blame it on something or someone (Salsen you started it. )

I'm hoping my doctor can give me some Meclizine to knock it down quickly on Wednesday.  Until then I'm using my neck vibrator and praying it will let up.  Between "Fred" (my PN) and the vertigo, my hubby is having a fine time trying to keep me upright.

Good luck to all of you with this horrible disease.  It just never seems to quit giving.

Hugs, Pooh

Pooh it can come and go. One thing you  can try is lay on your back on the bed with your head hanging over the edge and move your head slowly from side to side a few times and a couple of times a day. It's awful isn't it?
Yes it can get to you tummy.  Sometimes I've had it really whirling the room around really fast and other times just things aren't right, won't focus in and when you turn from side to side in bed you may find it aggravates it. I had to plead to get that medicine and now I have it in the house. Take it easy when this kind of thing happens. Drink alot. Water that is. hehe.

~Kewanee

[Katybarstool]

Pooh

Sorry to hear about the dizzyness. That must be horribe for you, but an ideal opportunity for you little dog to kiss you better.

Kathyx

[yodeb]

Thanks for the replies about dizziness.  My Rheumy also told me it was NOT related to Sjogrens..  I have been out of work since May 14, 2009 because of it and no one seems to know why.  MRI was clear, ear balance study was fine..No fluid in the ears..  The medicine makes me miserable so I don't take it unless if have a really bad episode.. 

deb

[Kewanee]

Would he know if it were SJS. It could be for all these Doctors know about it.
I would pursue it if I had that much trouble with it. Your Rheumy is usually the one that can help the most with this.

[Babs659]

Deb, isn't that funny?  My rheumy INSISTED the wooziness WAS Sjs!  Don't you just love it?

[yodeb]

When she told me it wasn't Sjogren's, I felt like she was rushing me on to the next subject...I also had a neurologist ask me why I was in his office because he had just looked at the MRI of my brain and said "your brain is fine you don't need to be here".  He said but you mind as well come back and we can talk.  My husband was with me and could not believe what he was hearing.  I have made a request for an evaluation with Dr. Birnbaum at Johns Hopkins.. I hope he will see me.  I will keep all posted. If I get to see him, maybe he will let me know what this is or isn't related to..
Sorry to ramble.

Deb

[Babs659]

That neuro sounds like a real idiot!  There is more to neuro diseases than what would show on the brain.  I went to my neuro with a normal brain MRI and he is running lots more tests---nerve conduction studies, anti-striated muscle antibodies--even a carotid artery doppler.