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?
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.
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.
Carpal Tunnel tests will be normal in small fiber neuropathy.
http://www.sjogrensworld.org/tepper.htm
Thanks for sending me back to that article to re-read.
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!
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.
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
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.
I have both sensory and autonomic neuropathy.
Genko
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.
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.
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
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.
At this point in my neuropathy,, I would consider almost anything,, I;m really tired of it,, most of the meds I have tried havent done muich for the burning and odd skin sensations,, I cant explain it to anyone without getting the eyebrows raised like I have lost my mind,, the head rushes as I call them are sometimes the worst, it seems like my head jsut freezes up along with my brain,,
Quote from: gphx on December 29, 2010, 01:00:48 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.
I just got off of Neurontin-- it didn't work and caused me to have extreme dizziness, vomiting. It had been prescribed for the severe pain that I have in my hips-- it would have been a bonus if it had worked for the neuropathy.
I am having stomach issues right now, so all my energy is focused on that. I always feel like I am putting out forest fires-- if it's not one thing, it's another. The neuropathy is very troubling though. For example, we drove down to Florida and I really couldn't help my husband out because my hands hurt so bad-- joint pain and now tingling. For instance, as I type, my right foot and toes are tingling like they are asleep. And I've only been here a few minutes!
I am about to try Etrafon for my stomach issues. I've heard it can also work as a pain reliever. I'll report back if I have any luck.
I don't know if this is neuropothy or not. I am still not sure what it feels like.
This is what I feel like. Pins and needles thru out my legs, legs jump and won't settle down. I sometimes have the same feeling in my arms too. If I take a flexiril at night they will stop long enough to get some sleep. Mornings are ok but if I am on my legs very long, they start again.
Is this neuropothy? I have a dr apt on Tuesday.
Mine sorta feels like bugs crawling on me... I'm deathly afraid of bugs so I'm always look like a spaz swatting away nothing on my legs.
That's it!! That is exactly how I feel. Is that Neuropothy?
Quote from: harlin on December 30, 2010, 10:09:04 AM
That's it!! That is exactly how I feel. Is that Neuropothy?
are you talking about the bugs feeling? according to my doctor, yes that is the symptom I experience with my peripheral neuropathy
harlin, In reading your post again, I wouldn't rule out RLS. Has your doc checked for that? I know the feelings can be similar to neuropathy and the fact that you are having trouble keeping your legs still is the classic sign (especially at night).
ETA: just read in your sig that you have that already... sorry lol - I'm thinking thats what is ailing you but you may want to make sure
Harlin,
It does sound a lot like RLS. I had a sleep study done last spring and they said I had that. I don't take meds for it.
Yes, I have sensory neuropathy and had the same symptoms at onset. I also had tingling sensations which started in my feet and spread upward. Unfortunately, I don't thing there is a good way to confirm it with testing. My NCV and EMG tests were normal. A sural nerve biopsy was inconclusive. I was treated based on symptoms and response to meds. Later I developed more symptoms that confirmed neuropathy. If anyone wants to do a sural nerve biopsy on you, say "no"! They are often unhelpful and 5 years later, I still have nerve pain from it.
I had the sural nerve biopsy too,, worst thing I ever did,,, but,,, when Pittsburgh read it,, they said it showed next to nothing,, the slides were sent to Mayo, where it showed a wealth of information, but I still regret getting it done fro a few reasons,,, what teh info showed was not followed up on even with my screaming to high heaven,, and yes,, I still have problems with the side of my foot being numb,,but I knew that going in,,, but not this bad,, sometimes you just dont get the whole story
I started slipping off ladders at work,, had no clue where I was putting my feet, the tingling started and then the awefull buugs crawling on my skin,, progressed to problems with a lot of sensory stuff,, mildy cool felt like a iceberg ,, hands that dont work and twitch, oh heck, its a real mess
Neurontin and Lyrica did nothing for me so I quit taking them. Pamelor does work for me and taking it before bed also helps me sleep better.