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k2626 04-10-2013 08:43 PM

Neuropathy
 
Does anyone here have small fiber neuropathy (stinging/electric pains, muscle twitches etc)

Ive had this going on 5 yrs now, but we do not know the cause still. I also now have pancreas issues. In addition, I get blood lines under my nails and a web like red rash on my thighs when in the sun.

I havent had lupus labs run in years, but when I did it was negative.

VeeJ 04-17-2013 01:34 AM

Re: Neuropathy
 
Hi, "k". I used to get a lot of neuro-like tingling and twitching. Mine was probably from B-12 deficiency, but I think neuritis also can cause this.

After sun, I got widespread lacelike mottling under skin surface that lasted from a few hours to a day, which probably was "livedo reticularis". LE is a sign of disruption in the autonomic nervous system that affects normal blood flow in capillaries. LE has been associated with fibromyalgia; also with anticardiolipin antibody and lupus anticoagulant, both of which are seen in APS (antiphospholipid syndrome). People with lupus are particularly susceptible to APS.

Re: fingernails, could these be "splinter hemorrhages"? I think those also flag abnormal capillary blood flow.

Have your doctors given your pancreas issues a name, like pancreatitis? Various things can cause: certain meds, vasculitis, gallstones, trauma, too much alcohol, etc. Have you had imaging tests? If not, I'd probably want those first, because of the possibility of gallbladder attack (incredibly painful). Maybe ask about gallbladder diet, too---i.e., do what's possible to reduce your odds of gallbladder attack if your doctor thinks gallbladder is a possibility. (For example, my sis & cousin both loved peanut butter. Bad choice!)

Then I'd probably want AI testing redone for lupus, APS, and all the other "close cousins".

I hope others add more thoughts. Please let us know what happens. Good luck! Bye, Vee

k2626 04-17-2013 07:15 AM

Re: Neuropathy
 
Thanks for this info!

Yes my labs point to mild chronic pancreatits but all 6 scans show no inflammation so drs are puzzled as they say it would show in scans

Yes I was referring to splinter hemmotaghrs and livedo reticularous-I've taken pics over the years so drs don't think I'm crazy. I also get beaus lines on (horizontal indents in nails)

All of this comes in flares

I had tons of AI labs and scans of brain/ spine when this all started but everything was clear! Does AI always show in labs? My blood clotting was normal too

VeeJ 04-23-2013 01:37 AM

Re: Neuropathy
 
"k", I think there are several reasons AI's can fail to show up in labs. Some auto-antibodies are hard to detect because they come and go: the immune system misfires & puts out autoantiboies &/or causes general things like inflammation, then the flare recedes. So testing can be like trying to hit a moving target. Timing of labs is important. During my first appt., my rheumatologist remarked, when he saw that I had a brand-new lupus rash starting up, "Good, we're catching it 'on the rise.'"

And in some people, an AI builds steam slowly & can take years to evolve.

Also, some labs are far more proficient at running AI tests than others. Many are titer tests & are notoriously hard to perform accurately.

Another pitfall: were all necessary tests ordered? My sis assured us for 5+ years that "all her labs" were OK. Problem was, he'd never ordered thyroid tests! When he finally did, he dagnsoed her immediately with Hashimoto's thyroiditis and prescribed Synthroid. And for my first two deep-punch skin biopsies, the pathologists only performed microscopic exams of the tissue, omitting step 2, immunofluorescent stain tests, because the dermatologists hadn't ordered the stain tests.

I probably had something like 6-8 sets of AI labs done before positive results showed.

This is out of left field, but can gallbladder problems cause pancreatitis? My sister had multiple mild-ish attacks after certain foods, like peanut butter. Sis still has her gallbladder whereas my mother's was so bad she required surgery.

Do you have any vitamin deficiencies? I had a lot of twitching & neuro-like tingling when my B-12 and Folate were low as part of slow-building lupus. I think various vitamin deficiencies can cause such things. Hugs, Vee

k2626 04-23-2013 08:45 AM

Re: Neuropathy
 
[QUOTE=VeeJ;5165514]"k", I think there are several reasons AI's can fail to show up in labs. Some auto-antibodies are hard to detect because they come and go: the immune system misfires & puts out autoantiboies &/or causes general things like inflammation, then the flare recedes. So testing can be like trying to hit a moving target. Timing of labs is important. During my first appt., my rheumatologist remarked, when he saw that I had a brand-new lupus rash starting up, "Good, we're catching it 'on the rise.'"

And in some people, an AI builds steam slowly & can take years to evolve.

Also, some labs are far more proficient at running AI tests than others. Many are titer tests & are notoriously hard to perform accurately.

Another pitfall: were all necessary tests ordered? My sis assured us for 5+ years that "all her labs" were OK. Problem was, he'd never ordered thyroid tests! When he finally did, he dagnsoed her immediately with Hashimoto's thyroiditis and prescribed Synthroid. And for my first two deep-punch skin biopsies, the pathologists only performed microscopic exams of the tissue, omitting step 2, immunofluorescent stain tests, because the dermatologists hadn't ordered the stain tests.

I probably had something like 6-8 sets of AI labs done before positive results showed.

This is out of left field, but can gallbladder problems cause pancreatitis? My sister had multiple mild-ish attacks after certain foods, like peanut butter. Sis still has her gallbladder whereas my mother's was so bad she required surgery.

Do you have any vitamin deficiencies? I had a lot of twitching & neuro-like tingling when my B-12 and Folate were low as part of slow-building lupus. I think various vitamin deficiencies can cause such things. Hugs, Vee[/QUOTE]


Thanks for your response. Since this all got so bad just in a couple weeks time when I had major stress and never fully went away just in flares-I just can't help but think its AI. One dr Dx me with crest on symptoms alone but I'm one if those that wants the labs!

All vitamins good -so not that


Yes gallbladder can cause pamcreas issues but usually gb stones as far as I know

Also I went into labor at 27 wk with no definite cause who knows maybe related thankfully meds and bedrest kept my baby in:)

The stabbing burning pains are awful sometimes they even wake me up. Randomly getting it in the wrist this wk

luca689 04-24-2013 01:19 PM

Re: Neuropathy
 
A diagnosis of CREST requires positive bloodwork of some sort, if you don't have sclerodactyly and the antibodies found in labs are very important as they can indicate what sort of things you might be looking at in future and treatment plans to avoid them if possible or early interventions. There's like 8 or 10 different one in systemic sclero. Like Vee said neuropathy can be caused by capillary damage like that caused by Raynaud's. I have to go on gabapentin every once in a while because of it. I do hope you get some answers or some relief soon!

k2626 04-24-2013 01:27 PM

Re: Neuropathy
 
Thanks guys. Ill be asking for another round of labs as I am going under general anesthesia and is worries me to do so without knowing what's wrong. The bee stinging pains hit all over but mainly feet and hands though lately it's been shooting in my right calf and right above my wrist. Very random and the muscle twitching is everywhere

Gullyabb 05-03-2013 11:27 AM

Re: Neuropathy
 
Hi K,

I do not have a diagnosis of lupus, but I do have confirmed small fibre neuropathy and the doctors are still trying to determine the cause. The bee sting like sensations you described sound very similar to what I had/have going on. I have also had warbling like sensations under the skin on my face, between my thumb and index and the bottom of my feet as well as twitches.

I've had nerve conduction studies done, but unfortunately they only measure large fibre nerves. Eventually I had QST testing and it showed what I already knew - that my ability to detect temperature and certain sensations has been seriously compromised. I now have to be very careful with bathwater.

Once the QST testing was done, the neurologist was confident that I had small fibre neuropathy. Since then, my nerve conduction studies have shown changes, so there may be other types of nerves involved now as well.

All that to say, along the way I learned that in more than 50% of diagnosed neuropathy cases, the underlying cause is not found and the best that can be done is treat the symptoms.

Stay strong and ask questions. If the neuropathy is caused by a treatable underlying disease, then the nerve damage may stop.

Good luck. I don't know if I can be of any help, but feel free. There is a neuropathy board, but the few times I checked it out, it wasn't very active.

Know that you're not alone, not likely crazy and not imagining it. It's hard to describe some of the sensations of neuropathy. I have constant buzzing in my feet, but that doesn't make sense to a lot of people.

Gully

Heather716 05-20-2013 01:49 PM

Re: Neuropathy
 
I have Sensory Peripheral Neuropathy and it has gone from bad to much worse. I am a diabetic and manage with diet only. The cause of the Neuropathy is still unknown however I am told diabetic is affected by sugar and others as not. Mine is definitely is. Kind of like the cart before the horse. I take Gabapentin 3500mg a day & Cymbalta 60mg a day. They help but as I have terrible jolts of random pain all over on top of numbness and pain in hands to elbows & feet to knees. Now I have reached a new level where I feel like electricity under my skin all over my body. My face & tongue are electric and sometimes seem affected by heavy cloud & rain. Worst part is my feet turn to electric fire in the night, wake me up and are making me crazy to put it mildly. Anyone have any ideas why the change and any answers. Just had a hip replacement and was starting to really feel good for a change. I am only 56 which is young for a new hip but way too young to be finished off by pain & lack of sleep. Any help would be welcomed. Thanks Heather Belle

VeeJ 05-25-2013 05:13 AM

Re: Neuropathy
 
HeatherBelle, have you discussed your "electrical jolts" with your dr.? Have they been occurring all along fince you started these meds? I think side effects for Gabapentin and Cymbalta may include such tingling jolts, the very problem you're taking them to control...

I'd review with my dr. (1) dosage (could these be symptoms of an overdoes?), and (2) whether diet has your diabetes under good enough control (I assume you test regularly). Also (3) whether your recent surgery threw you into a tailspin. (After major disc surgery, a friend had worse tingling & couldn't get his glucose under control. He takes Neurontin = Gapapentin, too.) Let us know how you're doing. Good luck!

junebugzz 05-30-2013 02:58 PM

Re: Neuropathy
 
Hi, I have fibromyalgia and Lupus and just in the last six months I have started being numb in my arms and hands and sometimes my toes are feet. It's so scary to me. My dr. hasn't really explained this to me at all. Will it get better? Are worse? Do either of you know, you both seem to know a lot about it? Thank You so much

k2626 05-30-2013 07:33 PM

Re: Neuropathy
 
I don't have either tho I have wondered if I have lupus due to the nueropathy flares, pancreas issues, rashes and blood under nails

I go to my neuro tomorrow and am requesting a biopsy to confirm

Heather716 05-30-2013 10:56 PM

Re: Neuropathy
 
[QUOTE=VeeJ;5179308]HeatherBelle, have you discussed your "electrical jolts" with your dr.? Have they been occurring all along fince you started these meds? I think side effects for Gabapentin and Cymbalta may include such tingling jolts, the very problem you're taking them to control...

I'd review with my dr. (1) dosage (could these be symptoms of an overdoes?), and (2) whether diet has your diabetes under good enough control (I assume you test regularly). Also (3) whether your recent surgery threw you into a tailspin. (After major disc surgery, a friend had worse tingling & couldn't get his glucose under control. He takes Neurontin = Gapapentin, too.) Let us know how you're doing. Good luck![/QUOTE]

Thanks VeeJ,
I had the jolts of pain long before the meds and they were way worse without Gabapentin. I take a ton of meds for thyroid, cholesterol,blood pressure, acid reflux & neuropathy. For someone who hates pills and actually struggles swallowing them I don't know how I got here. I'm sure all of this together causes some harm with the purpose of good. They say everything I have is genetic including diabetes. Anyhow the burning feet and lack of sleep are my main concern right now. Sometimes when my feet give me a break my arms and hands ache really bad. Surgery can upset our bodies so maybe it will settle down. I'll keep thinking healthy and get hopefully past this. Thanks for your encouragement. Heather Belle

VeeJ 06-01-2013 04:24 AM

Re: Neuropathy
 
k2626, you didn't say that you take diabetes meds, but just in case you do...

Yesterday I saw an article in the newspaper about a possible link between PANCREATITIS and a certain class of DIABETES MEDS. The concern looked "fuzzy" to me because (1) only 1 or 2 researchers have theorized a possible link, and their findings haven't been replicated by other researchers; and (2) only one class of diabetes meds is seeingly being questioned (Januvia was one mentioned by name).

How are you feeling, by the way? Did your neurologist do a biopsy? Hope you're getting closer to answers & better help.

k2626 06-01-2013 07:18 AM

Re: Neuropathy
 
No as I'm not diabetic right now

I did go to neuro he wants to do another emg but strongly feels I have an inflammatory disease causing this so going to rhuem too


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