Author Topic: Can Neuropathy come and go and vary in degree??  (Read 2928 times)

Sweetgirl

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Can Neuropathy come and go and vary in degree??
« on: July 04, 2010, 09:08:20 AM »
Good Morning,

Happy 4th of July to all my fellow US SJSers!

Just a question for those with Neuropathy.  What type of neuropathy would cause burning on arms and legs and joints?  Sometimes feels like it's from the bones and radiates out to the skin.  I also have ringing in both ears and my vision has been blurred, like I can't focus my eyes near or far.  I went to the eye doc last Friday and was told "you are fine".  The burning has been going on for years, but it comes and goes, so is that really neuropathy?  Questioning this because the burning has various degrees and sometimes I don't have it at all.

You are the experts on this.  So I would much rather ask you these questions then ask the professionals that insist it is stress.  If stress were the only reason for my being in so much pain, I think I would have met my maker by now!  (toxic family members)

Thanks for all of your help on this.  I am trying to find an "informed" Neurologist that can start putting the puzzle of me together and offer some help with these issues.  I am tired of feeling like I am on fire! :-\


hockeyluvr

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Re: Can Neuropathy come and go and vary in degree??
« Reply #1 on: July 04, 2010, 09:14:21 AM »
I just got diagnosed with Sjogrens about 2 weeks ago.  After doing my own reading I am sure I have Neuropathy, even though the doctors all said "i don't know what it is".  My legs from the knees down are numbish and not working right.  I don't know how long this is supposed to last.  I hope it goes away.  I hope this isn't forever. 
Sjogrens, Poly Neuropathy, degenerative disk disease, Osteoperosis  - On Plaquinel

Carolina

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Re: Can Neuropathy come and go and vary in degree??
« Reply #2 on: July 04, 2010, 09:22:47 AM »
Good question!

I don't know, it has just seemed to be progressive for me.  But the discomfort varies, that's for sure.  Sometimes the burning and tingling and stabbing pains are terrible, and some times I don't notice them so much.   I assume it has to do with 'flares' other conditions, weather, who knows, phases of the moon????

I have had terrible and progressive tinnitus (ringing, buzzing, howling, whatever, in my ears) and progressive deafness has foillowed, with the ear having the worst tinnitus being the one that is most deaf.

Recently I noticed that things were blurry at t distance (sort of double?) and I had my eyes tested, and sure enough I had 20/40 vision at a distance.  Now I had corrective lenses put INSIDE my eyes 8 years ago and was never ever going to need glasses.  BUT this is the result of nerve damage to my eyes, from the Sjogren's.

My Eyes, Ears, internal gastric system, arms, legs, bladder, tears and saliva are all affected by Sjogren's at this point.   

There are days when everything drives me up the wall, and days when I don't notice them so much.   

I don't know why.

But I do know that NONE of the conditions will improve on its own,  This is a one way deal.   Sorry, but that's true.

I make more adjustments, take meds for the saliva, have hearing aids and glasses, use sprays and creams.

I wear flat shoes, hold on to things, take Cymbalta and oxcarbezapine for the pain, and Aleve.

BUT, this is a one way disease.  It doesn't even go into remission like RA and Lupus.  I'm sorry about that, but it's true.

I just want to be able to get treated with and tolerate one of the medications that slows or stops the progression.

Stay tuned, I see a new neurologist next week!   Maybe he will help, or send me on to the rheumatologist of my dreams.

Kisses

Carolina
Female. 72 CVID.Sjogren's,IC.Periph.Neuropathy.Anemia,Copper Def.Raynauds,CAD,Osteoarthritis,Blepharitis,Meniere's/Deafness.Hiatal Hernia,Fordyce Spots,IVIG Gamunex,Medrol Atenolol,Pilocarpine,Aleve,Copper,Cymbalta,Nasonex,Lipitor,Estrogel,B-12,Iron,Alpha Lipoic,D-Mannose,NAC,Co-Q10,Turmeric,O

inga

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Re: Can Neuropathy come and go and vary in degree??
« Reply #3 on: July 04, 2010, 09:29:19 AM »
It comes and goes becoming more present and worse over many years.  Eventually it is ALWAYS present and in MANY areas, but this generally takes quite a while, like say, 10 years.  It is very insidious.  You seldome wake up one day and say, "I have neuropathy".

Sweetgirl

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Re: Can Neuropathy come and go and vary in degree??
« Reply #4 on: July 04, 2010, 11:00:04 AM »
Thank you for the replies.  Ugh!  >:( This is so hard to deal with.  I feel like a ticking time bomb and no one can diffuse me.   

anita

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Re: Can Neuropathy come and go and vary in degree??
« Reply #5 on: July 04, 2010, 11:04:38 AM »
On & off is it's specialty.  Treasure those 'off' days, because they won't last forever.  Eventually it's on all the time...and don't forget, it spreads as well.  Neuropathy is one of the many gifts that keeps on giving.
49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,

ohiolady

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Re: Can Neuropathy come and go and vary in degree??
« Reply #6 on: July 04, 2010, 01:36:44 PM »
I've had it since the beginning of my Sjogren's diagnosis which is almost 4 years ago.  Mine still comes and goes.  It can be quite painful when it is around.

Not looking forward to what Inga and Anita speak of when they have it all the time.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

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inga

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Re: Can Neuropathy come and go and vary in degree??
« Reply #7 on: July 04, 2010, 03:35:58 PM »
Seriously, I NEVER have a day when my pain rating in some area of my body is less than a 6.....I don't have many areas where it is less than a 3-4.  Hands are a 6-7, Feet 6-7, back 4-5, neck 4, shoulders 4, hips 4-6......and on and on.....and this is ON pain meds.  Dry eyes on steroids.  On IVIG.  This is just the disease.....this is how it is for me, whatever it is.  Keep in mind I am negative for SSA and SSB, + on ANA.  So, as for what I have, who knows.

ohiolady

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Re: Can Neuropathy come and go and vary in degree??
« Reply #8 on: July 04, 2010, 04:15:48 PM »
Inga,

I'm sorry to hear how much you suffer.  Sometimes it is just so hard to keep going.  This latest gastroparesis thing has really discouraged me.  It just seems that once I accept one thing something else creeps in. 

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 58

navydad

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Re: Can Neuropathy come and go and vary in degree??
« Reply #9 on: July 04, 2010, 04:30:47 PM »
mine never really goes away,, cold makes it worse,, hot makes it worse,, stress makes it worse,,,

Sheltiemom

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Re: Can Neuropathy come and go and vary in degree??
« Reply #10 on: July 04, 2010, 05:52:00 PM »
Sweetgirl,

The burning that emanates from neuropathy, if you're very lucky, might come and go.  I try not to recite my problem(s) on somebody else's post too often, but it might answer your question to a certain extent. 

I had head-to-foot (almost) like a bad sunburn at what I thought was the beginning of this thing this past January.  All I can say at this point is it's pretty much "at rest" for now after about 5 months when it was there most of the time.  FYI:  I have small fiber sensory neuropathy.

Hope yours will become better than it's been.

Best wishes,

Sheltiemom

Sweetgirl

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Re: Can Neuropathy come and go and vary in degree??
« Reply #11 on: July 04, 2010, 08:39:45 PM »
Thanks Sheltiemom.

After reading the responses I'm feeling more hopeless than before.  ( I know, I asked the question)  I guess I just have to live with it, like the rest of the SJS gang.  It really is a shame how we all want answers and medications or treatment (something!)that will help us live our lives with less pain and discomfort.  I really don't want to have anything wrong with me, but I have not been well for 10 years now and am still seronegative.  I just get bogged down every time a physician tells me "You are fine"  When I really am not.   :-[

LeoLady

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Re: Can Neuropathy come and go and vary in degree??
« Reply #12 on: July 05, 2010, 05:32:35 AM »
Sweetgirl:

Next time a doctor tells you that you're just fine, give him/her a big, fat Raspberry!!!  :P

I was diagnosed in 2008, but have had pSjS for at least 10 years now.  My neuropathy started about 6 months ago or so and my hands, arms, feet and legs just hum along all the time.  It's worse at night when I lay down, or maybe it's because there's nothing much else going on and I notice it more. I'm not going to a neuro until it gets worse.  The fewer meds, the better at this point.  I'm up to (at least) 25 pills a day now.  Hmmm - I think it's 25.  Brain fog, don't ya know!

One thing about Sjogren's - it sure keeps you busy!

Carolina:  I think it is phases of the moon or the full moon - just like in Twilight.  I feel like I could turn into a werewolf with a really bad attitude!

Hugs,

LeoLady

hockeyluvr

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Re: Can Neuropathy come and go and vary in degree??
« Reply #13 on: July 05, 2010, 08:45:35 AM »
Sweetgirl .. I hear ya.  I've been told I'm fine and to take 'anxiety meds' a bunch of times.
I'm freak'n sick ... obviously .. and they say 'you are fine it's in your head'.
I'm trying not to be mad at them because 'that's where they are'. 
I'm mad at the situation ... and god .. but I'm trying not to be mad at the doctors.
They are only human.

Sjogrens, Poly Neuropathy, degenerative disk disease, Osteoperosis  - On Plaquinel

Sweetgirl

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Re: Can Neuropathy come and go and vary in degree??
« Reply #14 on: July 05, 2010, 08:57:47 PM »
LeoLady,

Thanks for making me laugh!  :D  I needed that!!