Author Topic: neuro symptoms  (Read 3818 times)

Peg41

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neuro symptoms
« on: June 27, 2009, 03:34:32 PM »
Hi,  I'm new to Sjogren's World.  I have a bunch of neuro problems and wonder if anyone else has anything like it.  The left side of my face is numb.  The muscles in my lower jaw are so weak it is impossible to chew.  My speech is impaired.  My left had is numb and I have trembling in the fingers.  I had a lip biopsy which was positive for SJS. Because I can't chew, I've lost 50 lbs in the last 1&1/2 years.  I now have a stomach tube and use Ensure.   It took 4 drs. to finally find out what was wrong.  I've had my 5th. IV treatment with cytoxan and solumedrol and have one to go next month.  So far no big changes but some minor ones.  Has anyone been on this treatment?  Do you know how long it takes to get results?
Thanks,

Peg41

wordnerd

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Re: neuro symptoms
« Reply #1 on: June 27, 2009, 03:52:16 PM »
Hi Peg,

I'm so sorry you are having so much trouble with your symptoms.  My left side of my face is also pretty numb.  I still have some sensation but not a lot.  I've also have tremors, involuntary muscle movements, vertigo, and occasional seizures.  It seems like I'm hearing of more and more people who have neuro problems like this with Sjogren's.  I just started Rituxan for my issues.  I've only had one infusion so far and will be having the next on Wednesday.

Btw... when I was loosing lots of weight from my autoimmune pancreatitis I found that I liked Boost a lot better than Ensure with regards to taste.  (I had a NJ tube at the time and they are not fun either.  *hugs*)

I'm sure there are others here who can answer you questions about your medication better than I can.  I really hope you get some relief soon!

-Lauren

rnathans

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Re: neuro symptoms
« Reply #2 on: June 28, 2009, 01:01:54 PM »
I developed gastroparesis ( stomach stops working-slows down dramatically) from my SJS, lost 60 pounds in 9 months and had a feeding tube. I was on cytoxan for 1 yr. After 8 months I was able to get rid of the feeding tube.

In my case the gastroparesis was caused by a kind of neuropathy. Your weight loss seems due to not being able to chew secondary to muscle weakness. I do not know whether cytoxan would address the underlying cause of the muscle weakness-what is the presumed mechanism?) the way it did  my autoimmune neuropathy. I sure hope it does.

What improvements have you seen so far?

Chickpea

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Re: neuro symptoms
« Reply #3 on: June 28, 2009, 01:46:10 PM »
Hi Peg

I have mainly neuro symptoms, with just a bit of SjS mouth and eye dryness.  I started with a numb toe which spread up my right leg, right arm, left leg and then left arm.  Then my face joined in the fun! 

Was there an episode or maybe a severe headache that prompted the beginning of your facial symptoms?  The left side of my face, tongue and throat went numb after what was probably a small stroke nearly two years ago; and the same thing happened on the right side last summer.  My speech was affected too, but my chewing wasn't anywhere nearly as badly affected as yours.  I just got very tired chewing so I relied on soft food and soups.

It could be that your facial symptoms as due to neuropathy, and the muscle issues are more to do with nerve control than weakness.  What does your neurologist say?

I also have the digestive issues that rnathans has and I'm losing weight rapidly.  I am about to start on Cytoxan having been on CellCept for nearly 10 months with no improvements.  Can you tell me what your experience of Cytoxan has been like?  All advice welcome!

Take care - Chickpea


Peg41

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Re: neuro symptoms
« Reply #4 on: June 29, 2009, 02:33:01 PM »
Hi Chickpea,
I get cytonax 1800 mg and solumedrol 1000 mg once a month IV.  So far I haven't seen much change.  My dr. is a neurologist who specializes in autoimmune disorders.  I feel that I'm on the right track with him.  I have had 5 out of 6 monthly treatments.  After that, I will get the treatment once every other month for 6 months.  It will be a total of 9 treatments.  The cytoxan doesn't bother me too much but the solumedrol is a killer.  It makes every muscle in my body ache but pain meds really help.  I wish I could tell you about the effectiveness of cytoxan but I don't know yet.  My fear is that all of the damage to my cns is permanent.

missyb

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Re: neuro symptoms
« Reply #5 on: June 29, 2009, 02:35:21 PM »
oh that is terrible! i do have tingling around my mouth

navydad

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Re: neuro symptoms
« Reply #6 on: June 30, 2009, 08:13:59 AM »
My neuro problems just seem to worsen by the day, I can almost cry when I think about al that has happened,, not only have I gotten extremely sun sensitive,, but now I fall asleep at teh drop of a hat,, I jsut cant keep my eyes open,, I slumped out of a chair on sunday,, my stomach also has slowed down to almost nothing moving,, I told those doctors about that so many times,, now it seems all i have to do is walk in front of a fan blowing or in front of the Heating/A/C vent and the air blowing on me sends my body into spasms,, my legs hurt all the time, my stomach is a mess,, my arms burn constantly,, I dont kow if its possible,, but can swollen lymph nofdes inder the arm cause numb arms and tingling, I;m barely sweating except under the arms,,
  No energy at all, After I got home from work,, I choked down a hamburger, had a late notice from the mortgage compny,, stared at it for a half hour and it made no sense to me,, I just could not wrap my mind aruund it,,
 Tomorrow i;m supposed to have the sural nerve biopsy,, and thursday the Qsart test,, I have no idea how i;m going to get through al this,, I just cant do this much longer,, I call doctor after doctor, tel the receptionist that i;m getting sicker and they all say, I;ll leave the doctor a note,,
  I;m just so frustrated,, I;m tired, have no fight left,, and dontkow whats wrong with me,, I;m still battling infections in my sinuses,, my right eye is so blurrrd, I;m jsut tired of running fromdoctor to doctor,, I almost am to the point that I cant drive anymore, I cant feel the pedals, cant judge distances, its just a overall mess,, told my wife this moring,, i dont want to die like this,, she is at a loss as to what to do,,

Peg41

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Re: neuro symptoms
« Reply #7 on: June 30, 2009, 11:09:51 AM »
I am so sorry.  I know exactly what you mean.  Apparently you are not being taken seriously by your drs.  I wish I had been more persistant about doing something about my symptoms.  It took me 4 drs. 1dentist and 1 eye dr.  to finally find out what was wrong with me.  Has anyone suggested a lip biopsy?
Are you on any medications?  Depression goes hand in hand with SJS. 
Take care and I hope you can get some good care.
 

Scottietottie

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Re: neuro symptoms
« Reply #8 on: June 30, 2009, 03:05:01 PM »
Hi Peg  :)

Just wanted to say welcome to sjogrensworld!

Take care - Scottie  :)
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eyeamdry

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Re: neuro symptoms
« Reply #9 on: June 30, 2009, 04:14:56 PM »
A short note to those with numbness especially on their face, lips etc. I am taking Lyrica for that and it does a lot to keep the numbness to a minimum.  I can only say this about facial effects, not extremities etc.  I take 3 x 100mg a day of Lyrica.  Lucy

navydad

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Re: neuro symptoms
« Reply #10 on: July 02, 2009, 08:15:44 AM »
I take Lyrica 150 mg twice a day,, along with cymbalta 60mg once a day,, I caled Neuro this morning about the facial numbness,, plus the screaming in the left ear,, only starts to hurt really bad wheni get out of bed,, I dont kow if its a ear infection or a sinus infection causing teh problems,, I have to get the Qsart test this afternoon,, had the sural nerve biopsy yesterday, surgeon was pretty good,, no bleeding at teh site which is about 4 inches long,, but i do feel the numbness along the outside of my left foot which he said is permanent,, I;m just so tired of fighting for a Dx of something,, sun was out coming home from hospital,, felt like my arm was being scalded,,