Author Topic: What does neuropathy feel like?  (Read 4031 times)

kwolfsheimer

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What does neuropathy feel like?
« on: October 25, 2010, 07:17:00 PM »
I would like to say that I am getting neuropathy in my hands and feet, but I'm not 100% sure that I have it.  This is something that is getting worse and worse.

My fingers and toes tingle like an electric current is going through them.   If I hold anything in my hand, I lose feeling in my hand. Forinstance, I can't hold a cell phone and talk.  If I do, I lose feeling.  I can't grip the steering wheel for too long.   I am having trouble using a curling brush. I used electric hedge trimmers yesterday and I couldn't feel my hand for hours and I had pains all up and down my arm. 

At night, my feet will go numb.  But they also go numb when I walk for any distance.  If I stand, my feet go numb; if I sit my feet go numb

It feel like my limbs are asleep with the tingling feeling that you get when you've been sitting on your hands or feet and the circulation has been cut off.

Could this be neuropathy?  For those of you that have it, did it start slowly and get progressively worse?

wally

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Re: What does neuropathy feel like?
« Reply #1 on: October 25, 2010, 08:01:42 PM »
I am 44 years old and just started experiencing the same feeling in my hands and feet. I think it is neuropathy from what others on the board have mentioned. Nothing showed up on a nerve test on my hands so the neurologist said maybe carpal tunnel and gave me wrist splints. He dis not think it is sjs related. I am getting another opinion as I disagree.
Female, 48 years
Primary Sjogren's Syndrome
Hereditary Hemochromatosis
take: Prozac, punctal plugs, multiple eye drops, prednisone for flares
            <><

inga

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Re: What does neuropathy feel like?
« Reply #2 on: October 25, 2010, 08:03:53 PM »
It depends on what kind you get.  Sensory feels different than autonomic.

What you describe could be PN.

The ONLY real way to see if you have small fiber neuropathy is to go to an academic setting where they do intraepidermal nerve fiber biopsy.  This involves 3 to 4 'punch' biopsies of your skin, usually at the ankle, the upper calf, the inner thigh and fore arm.

It takes up to 6 weeks to get a result.  They will count the fibers and stain them to rule out certain diseases such as amyloidosis.

EMGs can be completely normal in sensory neuropathy.

If you have autonomic issues, they may do an autonomic battery of tests, including, tilt table, thermoregulatory sweat test, Qsarts, and a number of breathing tests.  If these come back abnormal, an assumption can be made that you have small fiber, although, usually they still do the punch biopsies.


inga

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Re: What does neuropathy feel like?
« Reply #3 on: October 25, 2010, 08:05:07 PM »
Carpal Tunnel tests will be normal in small fiber neuropathy.

gphx

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Re: What does neuropathy feel like?
« Reply #4 on: October 25, 2010, 08:43:32 PM »
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.

Suzie

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Re: What does neuropathy feel like?
« Reply #5 on: October 26, 2010, 12:24:10 AM »
Thanks for sending me back to that article to re-read.

kwolfsheimer

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Re: What does neuropathy feel like?
« Reply #6 on: October 26, 2010, 05:32:56 PM »
Thank you for that article and for all the postings.  I am in the process of switching rheumotologists, although my appt is not until January, and unfortunately, a lot of my concerns may be shuffled in an introductory meeting.  I sometimes don't know what is "normal" or just getting older vs. SSJ,  so I dismiss them until they become severe.

One of the things that I noted in the article was that persons who are SSA positive are more at chance to contract neurological symptoms, which gives me some questions since I am.   This started with numbness in the back of my head and headaches.  I have been diagnosed with something else-- AVM's, but I may ask the doctor if he thinks I should pursue this further. I am a bit worried that some of this may be something else in disguise, like MS... but I won't worry until I can get a firm diagnosis.

Thanks!

inga

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Re: What does neuropathy feel like?
« Reply #7 on: October 26, 2010, 05:55:47 PM »
My daughter has had AVMs and if you need an excellent doctor for these, PM me.  She has had surgical removals and finally sclerosing, which WORKED.  She sees the premier physician in the country for this issue.

As far as the PN goes, please, get to an academic center, if you are not already at one.  As far as the SSA goes, I would not be as concerned about that in terms of PN.  It definitely is a diagnostic criteria for SjS....that is about it.  Literature conflicts on what it all means.

The biggest concern is the autonomic neuropathy that can come out of the blue, and when full blown is extremely difficult to handle.

mom16

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Re: What does neuropathy feel like?
« Reply #8 on: October 26, 2010, 06:52:54 PM »
Inga, is it true that small fiber neuropathy is linked to autotomic neuropathy?
Is small fiber neuropathy the same as sensory neuropthy.

Right now my small fiber neuropathy seems to have settled down a bit, do
 you think it could still turn into autonomic neuropathy down the road?

My doctor had said that the way your body presents with the first onset
is usually what you'll have. What do you think?  I know you've had a lot
 of experience with this.

I wonder if my symptoms seem to be under control for now if that
will be the case for awhile.  Did that happen to you at all?

I don't seem to have any symptoms related to autonomic neuropathy.

Karen 
Primary SJS with small fiber neuropathy.  Plaquenil, Neurontin,  and Cymbalta
Female-46

inga

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Re: What does neuropathy feel like?
« Reply #9 on: October 26, 2010, 07:06:44 PM »
Sensory is the more common of the three locations of neuropathy. 

The global name is peripheral neuropathy, meaning not in the central nervous system which is the brain and spine.

PN has 3 major divisions by affected location, sensory, motor and autonomic.  Sometimes enteric is mentioned, but that is autonomic.

The C fiber is the name of the actual fiber involved.  They are known to us as 'small fibers' since they are small and unmyelinated.

Many conditions or 'diagnoses' described on here are actually components of autonomic neuropathy, gastroparesis being one.  Dysatuonomia is basically the same thing as autonomic neuropathy, maybe just a bit milder.

It is really hard to predict where neuropathy will go.  Since you have sensory neuropathy for a while, I would not be too concerned about it becoming autonomic, but there is no predicting.


Hope for the best.

genko_b

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Re: What does neuropathy feel like?
« Reply #10 on: October 26, 2010, 08:47:38 PM »
I have both sensory and autonomic neuropathy.

Genko

inga

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Re: What does neuropathy feel like?
« Reply #11 on: October 26, 2010, 08:57:49 PM »
I do too, and the autonomic bothers me much more.  One can have all three, altho, usually one has sensorimotor or sensory with autonomic.  It is rare to have autonomic and not sensory.

galaxygirl

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Re: What does neuropathy feel like?
« Reply #12 on: December 28, 2010, 07:13:37 AM »
I have tingling in my hands and my hands go completely a sleep at night. My question is what is everyone doing for their symptoms? I am presently doing acuputure.

CAT1962

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Re: What does neuropathy feel like?
« Reply #13 on: December 28, 2010, 10:00:36 PM »
OF COURSE, I had a normal EMG today. So, the Neuro said the tingling, cold feet and hands, or burning feet are related to m,y SJS DX. I guess that means small nerve issues?? PN? I have no idea.  :P
Primary SjS, hair loss, achy joints/muscles, dry skin/eyes/nose/mouth/EHEM, Low Vit D, low potass., high CRP, Asthma (Albuterol), CFS, Fibro, RA, thyroid nodules,PN..MED: singulair, cal-mag-zinc, Ibuprohen, NO steroids, NO Plaquenil.

gphx

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Re: What does neuropathy feel like?
« Reply #14 on: December 29, 2010, 03:00:48 AM »
kwolf, your description matches my own sensations almost perfectly. Unfortunately there are times when my numbness suddenly extends to my entire body including my head. At that point I feel like I'm off in another world and this one doesn't quite register. At that point there's nothing to do but lay down.

A lot of people take and talk about Gabapentin/Neurontin for these types of problems. Results vary, some great some not so. The heavy hitter seems to be Baclofen.

A friend with issues similar to my own but still more progressed and/or severe is getting good results with Baclofen. She is considering implantable Baclofen that dispenses 24/7 so she doesn't have to mess with it. A problem I've heard of with Baclofen is, being a CNS depressant, it can make one even more tired but if it gets rid of the constant CNS 'noise' it might be worth it.

Some of the folks with MS have been getting excellent results from a controversial therapy involving opening and sometimes stenting narrowed jugular veins in their necks known as CCSVI. Results for many have been dramatic. Since SS promotes inflammation and even vasculitis I've often wondered if it might be found in those with SS and neuro issues if doctors begin to look for it. Maybe I'm too much of an optimist but I've seen many people formerly confined to wheelchairs get up and go dancing or for a run, the burning/tingling in their limbs and the fog in their heads lifted. It needs to be proven in formal studies. Meantime it seems worth following at the least.
Dxed unspecific 'sicca syndrome' eyes and mouth. Neuro issues, muscle weakness. SS Seronegative but high inflammatory markers. Diabetes dx 2010. Glucose control improved neuromuscular issues. Enlarged thyroid under observation 2013. Yippee.