Author Topic: Neuropathy in Sjogren's and other Rheumatic Diseases  (Read 2561 times)

magistramarla

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Neuropathy in Sjogren's and other Rheumatic Diseases
« on: April 14, 2010, 11:37:36 AM »
Hi Everyone,
Here's another report from the conference.  I'm posting this one, since I think that it might be important to many of us.  I for one, have had a neurologist misdiagnose me with MS and then seem very concerned when my MRI was normal.  This presentation made it all make sense to me.

Neuropathy in SJS and other rheumatic diseases                      Ann Parke, MD

  Dr. Parke is from the Univ. of Connecticut Health Center.    She says that rheumatic diseases are systemic ? arthritis and skin complaints are just some of the symptoms.

Neurological symptoms may occur in The Central Nervous System (brain and spinal cord), The peripheral Nervous System (sensory somatic system) or The Autonomic Nervous System. 

Sensory neurons conduct messages from the external environment to the CNS.  Motor nerves conduct messages from the CNS to muscles and glands.

The Autonomic system consists of sensory and motor neurons that connect the CNS to the organs and conduct mostly involuntary messages (breathing, etc.) and use two groups of motor neurons ? one pre, one post ganglionic.  Ganglia are on either side of spinal cord. 

Pathological Processes
Simple entrapment syndromes ? carpal tunnel syndrome or radiculopathies
Inflammatory ? vasculitis and/or auto antibody   a. Ro antibody ?pure sensory neuropathy  associated with SSA antibody - 2% SJS patients.  B. Phospholipid antibody thrombotic and demyelinating syndrome ? 14% SJS patients ? more common in Lupus.
Vasculitis ? purpura ? red , raised dots on legs, upper thighs, or trunk

?   Central disease includes stroke-like symptoms, aseptic meningitis, dementia, demyelination syndrome, acute psychosis and sudden acute hearing loss.
?   Peripheral Disease ? mononeuritis multiplex ? damage to nerves outside the brain and spinal cord  ( added info  -   http://emedicine.medscape.com/article/316024-overview  )
Peripheral Neuropathy  - symptoms depend on underlying pathology and size of affected nerves.  Large nerve abnormalities can be detected by nerve conduction tests.  Skin biopsies (epidermal nerve fiber density biopsy) can detect small fiber disease.  Nerve biopsies help diagnose vasculitis.

?   Commonly a sensory neuropathy
?   Usually lower limbs
?   Glove and stocking pattern
?   Usually mild
?   Combined mixed polyneuropathy is more severe.
?   Numbness
?   Coldness
?   Burning pain & tingling
?   Lancing pain
?   Weakness
?   Usually in feet & legs

Up to 60% SJS patients may have PN, mostly small fiber neuropathy.
Cranial Neuropathies ? Bells palsy, trigeminal neuralgia and others

Autonomic Neuropathy
?   Tilt table tests show abnormalities ? blood pressure not well maintained
?   Mixture of sympathetic (fight or flight system) and parasympathetic (returns body to normal) dysfunction.
?   Evidence shows that there is abnormal neuro-endocrine control
?   May be caused by inflammatory cytokines ? interfere with neural release of acetyl choline

SJS ? antibodies to muscarinic 3 receptor have been shown in SJS ? interfere with glandular function in animal models.
 
SLE  - autoantibodies associated with other diseases and syndromes:
?   Protein-Phosphilipid antibody ? recurrent arterial & venous thrombosis
?   Antimitochondrial antibody ? Primary biliary cirrhosis
?   Anti Ro antibody ? Neonatal lupus syndrome
?   A.N.C.A.  ? Wegners Granulomatosis, other vasculitidies

Phospholipid antibody syndrome ? cerebral ischemic disease

Autoantibodies and Disease   - autoantibodies may be present for years before clinical complaints develop.  Loss of tolerance and autoantibody production is genetically controlled and environmentally triggered.
 
New meds on the horizon ? those that interfere with abnormal B cell function.

I've seen so many people asking questions about neuropathies, so I hope that this report is helpful.
Hugs,
Marla

sewandsew

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #1 on: April 14, 2010, 12:34:19 PM »
Thank you so much for all of your posts on the conference and with such detail.  I feel like I've attended.

Suzy

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #2 on: April 14, 2010, 12:59:13 PM »
Thank you, Marla! Very good information!
I'm a 37-year-old stay-at-home mom to two little boys ages 8yrs and 4yrs.

Sjogren's DX '97, Raynaud's, Superficial Parotidectomy, Cholestasis of Pregnancy, Gilbert's, Vasculitis, Fibro, B12 & D Deficiency, Drug Allergies

Plaquenil, Lyrica, Rituxan, Vit D, B-Complex, Biotin, Calcium, Soothe XP

JannaLee

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #3 on: April 14, 2010, 02:40:25 PM »
Thank you Marla,

I'm one of the ones who worries about dementia and psychosis....glad to see them mentioned and hoping for a treatment down the road.

I appreciate you so much!
Janna

YYC_ Mommy

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #4 on: April 14, 2010, 04:12:21 PM »
Thank you so much doing this, I really appreciate this information as it is a BIG concern for me.

binx

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #5 on: April 14, 2010, 04:57:43 PM »
dear marla,

i am new here, but i thank you for taking the time to post an outline from each day of the conference.  this thread on neuropathy is of particular interest to me since i am dealing with mostly neurological presentation of my illness.

best wishes,
binx

Scottietottie

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #6 on: April 14, 2010, 06:59:55 PM »
Thanks Marla - particularly noting that 60% SjS sufferers may have small fibre neuropathy. Why don't many docs know that!!  :-\

Take care - Scottie  :)
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Carolina

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #7 on: April 14, 2010, 08:47:53 PM »
Great topic!

What I have gathered from all my reading is similar to your report.

This is a systemic condition with a 'constellation" of syndromes. 

I have developed peripheral neuropathy and NO ONE here knows anything about it.  The Rheumatologist doesn't know it's related to pSjS, and the neurologist knows almost nothing about pSjS.

I have EXACTLY what you describe:

Peripheral Neuropathy  - symptoms depend on underlying pathology and size of affected nerves.  Large nerve abnormalities can be detected by nerve conduction tests.  Skin biopsies (epidermal nerve fiber density biopsy) can detect small fiber disease.  Nerve biopsies help diagnose vasculitis.

?   Commonly a sensory neuropathy
?   Usually lower limbs
?   Glove and stocking pattern
?   Usually mild
?   Combined mixed polyneuropathy is more severe.
?   Numbness
?   Coldness
?   Burning pain & tingling
?   Lancing pain
?   Weakness
?   Usually in feet & legs

Up to 60% SJS patients may have PN, mostly small fiber neuropathy.

The key questions:   Will it get worse?  How can it be treated?  Can it be stopped?

I still don't know the answer to those questions.

Carolina

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JannaLee

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #8 on: April 14, 2010, 09:30:41 PM »
I think the treatment is to step up or begin immunosuppressant medication.

This was what was suggested to me by my rheumy.

Does anyone else know if I'm correct about this?

My feelings will not be hurt if I am wrong.

Janna

Carolina

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #9 on: April 14, 2010, 10:12:20 PM »
I'm waiting until I get to NC to find a doctor to treat my PN and general pSjS.   It seems like I am having to wait for ever.   I have to call next week to start trying to see the best guy at Duke.

I have surgery on Friday, to remove cartilage from a torn meniscus from my left knee. So I plan to use next week to call NC for MDs.  And remind the insurance company I talked with a couple of weeks ago to send me the forms for enrolling in NC.

I haven't started any immunosuppresant medication yet.   I'm a bit anxious about that, both that I won't be offered it as a choice, and that I WILL BE OFFERED and have to deal with possible side effects.
,
It seems strange to have a condition that has so many ramifications and for which the medications are such a mixed bag.  Since I've become allergic to over 7 medications in the past year, I'm also worried about whether anything will be able to help me.

The knee problem has sort of distracted me from the PN, in a weird way.  And when I got the diagnosis, I was also prescribed an overpowering anti seizure medication, Depakote, which made me terribly sick.  I haven't been anything like normal since the beginning of December it seems.

I stopped the Depakote, but then the knee became a problem.  I honestly haven't had time to THINK about the PN since then.  Isn't that weird.

Part of me hopes that most of it will just go away!  or that maybe the doctor just made a lot of mistakes and I don't have anything really seriously wrong with me.

I guess we all go through this.

It is just very wearing, I've found.   I can see how hard it is for the spouses and families too......

Oh well, I just keep on tuning in here, exercising every day, and hoping for the best.

Carolina

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magistramarla

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #10 on: April 14, 2010, 10:33:57 PM »
Carolina,
You sound so much like me!  I've had the knee problems, too.  I had the arthroscopic surgery, but now I have swelling behind my knee (Baker's cyst) and it still bothers me.  I take Plaquenil and Methotrexate, and they aren't really too bad.  My skin problems have gone away and my joints are a bit better.   My energy is definitely better. 
The Plaquenil took a bit of getting used to, since it gave me the trots at first.  It wasn't too much fun while I was still teaching and desperately needed to run (hobble) to the faculty restroom.  I've been taking it for a year now, and as long as I take it with food, I'm fine.
I tried the pill form of MTX and got terribly sick, so my doc changed it to the injection, so that it would bypass my GI tract.  My hubby gives it to me on Sunday evening, so that I sleep through most of the queasiness.  On Monday morning I eat some warm oatmeal or rice and curl up on the couch with the cats for the morning.  By early afternoon, I start to feel decent.  The rest of the week, I feel much better and full of energy, so it's worth one down day.
Good luck with your surgery and your move.  I think that you said that you're currently in El Paso.  We recently moved from San Antonio to the coast of California. 
Take care.
Hugs,
Marla

jstroble

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #11 on: April 15, 2010, 05:16:18 PM »
Hi

I am wondering what glove  and stocking pattern is.  I've heard the term before but have never figured it out. 

Thanks and thanks bunches for all the information. 

Joyce

Carolina

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #12 on: April 15, 2010, 05:45:04 PM »
Glove and stocking syndrome occur when there is nerve damage in the feet/legs or hands.   The damage causes numbness which feels a bit like you have a stocking on your foot and leg, or a glove on your hand.

Carolina
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navydad

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #13 on: April 15, 2010, 06:59:03 PM »
I feel like i;m wearing hunting socks and boots over them,, along with mittens,, and two pair of lined gloves,, I hate it,, I really hate it,, maybe there are no meds to help, no cures,, nothing,, just have to endure it the best we can,,

Carolina

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Re: Neuropathy in Sjogren's and other Rheumatic Diseases
« Reply #14 on: April 15, 2010, 07:49:05 PM »
Ack, Navydad, how awful!

Mine is mild by comparison.    Do you have any other problems?  I've been identified with ataxia and right foot drop, and I've fallen several times, and I"m very unsteady on my feet a good deal of the time.

Nothing I've read suggests that PN can be reversed, just perhaps slowed and the pain relieved.

I'm taking Cymbalta, which is helping with my  pain.  Cymbalta is ON LABEL for the pain of peripheral neuropathy and for fibromyalgia.

But of course, not everyone can tolerate every medication.  As I well know.

Keep me posted.

Carolina
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