Autoimmune and Pain - nueuropathy
 

i am seeking members who not only have autoimmune issues (as i do) but other problems such as neuropathy. I believe these issues are related and think we need to join together to get the attention of the medical community. I am not ready to accept a diagnosis of dealing with pain. I have my own autoimmune issues as well as neuropathy and believe there is a connection.

Please see my posting under peripheral neuropathy. i am bound and determined to pursue this.. would love some help.

Spkar - I have both too. I have a lot of autoimmune diseases which started when I was 15 and then was diagnosed neuropathy after surviving high-dose chemotherapy and radiation. The neurologist said the neuropathy was from one of the chemo drugs - Vincristin. But my mother has it, my sister has it, cousins, etc. It's hereditary. Nannygoat

me too
 

Hi, I have peripheral polyneuropathy and have been told I most probably have Sjogren's. None of my tests for Sjogren's as of yet have been positive but I do have severely dry eyes/nose/mouth and quite a few other symptoms (Raynauds etc). I am currently awaiting my second lip biopsy which hopefully will confirm the Sjogren's. I have been told (and have read) that polyneuropathy can be a side effect of a number of autoimmune diseases, including Sjogren's. I believe the medical community is quite aware of these linkages but that there is little being done to figure out cause, treatment etc. I also find it confusing how I can be told there is no treatment for Sjogren's but I could try prednisone for my neuropathy (which is caused by Sjogren's....). Anyway, good luck, let us know how it goes.

I was first diagnosed with Multifocal Motor Neuropathy which started with painful cramping in my right hand and fingers. I have now gone to a diagnosis of CIDP because of pain and severe sensitivity in my right hand plus weakness has now gone over to my left leg and foot.
I am told this is a rare disease so it helps to find people and exchange notes. I am on IVIG treatments which so far have kept things at bay.

I have just been diagnosed with Neuropathy & myopathy due to a connective tissue disease, It is an overlap with my Myasthenia gravis. Back to the Reumy for a look on worsening symptoms !

My neuropathy is related to autoimmune diseases. It's genetic, not diabetic or alcoholic induced. I'm on 5mg of prednisone a day to keep it stable.

Hi - can you tell me how the prednisone is going? One of my neurologists recommended it (the other advised against it) - so far I haven't taken it for fear of side effects (glaucoma, sleeplessness, irritability, weight gain etc). I would love to hear whether all these concerns are valid (knowing that everyone reacts differently)

thanks

I have Crohn's, eczema, arthritis, episcleritis, and peripheral neuropathy. I avoid prednisone like the plague, as when I was on it initially for severe ulcerative colitis I became extremelydepressed -- no, despondent -- and suffered many of the side effects immediately (my skin thinned and aged 2 decades practically overnight).

Also have many neuropathy problems, MS and now at least one other auto-
immune (Collagenous Colitis) plus allergies of various types. I am quite sure
that they are all connected. I have had varied success with prednisone,
doximethazone and Solumedrol, each time different, some bad, others very
helpful. It can't hurt to try, but don't start on or right before a weekend.
You may just need to be in touch with Dr's office! Good luck.

They tell me my PN is related to the fact I have some kind of AutoImmune Disease, so I am with you.

MeTOO..hand raised
 

Hello , I to am a victim of autoimmune with neuropathy involvement..sero negative Sjogrens is my diagnosis for today anyway.....sigh. We are together in the same boat and I am ready to just scream from frustration. Nice to meet all of you on here cause it helps to not feel alone with this stuff. Mary:grouphug:

I have been diagnosed with peripheral neuropathy, osteroarthitis, Autoimmune Inner Ear Disease, Meniere's and a blood disorder HTLV II. There's more but that's enough for now. I found out about my blood disorder while givng blood during a blood drive at work in 1987. since then I have been diagnosed with a number of autoimmune syndromes/diseases. I believe there is a connection between all or at least most of them.

I have asked my PCP for a referral to see a rheumatologist, we'll see what happens with that. I'm housebound and have been for a few years. Oh, I can go to the store and doctor's appointments but much more than that causes great anxiety. If I need to go more than a few miles, I have to ahve someone drive me. If not, I go into a panic attack and that's not a good place to be when you're out in the middle of nowhere trying to get somewhere.

Anyway, I was hoping to find people of like problems to talk with about them. The symptoms what process they did to find out for sure what those symptoms lead to etc... I'm seeing some real interesting stuff here and will probably stay on for a bit to find out more.

I'd really like to find anyone who has the blood disorder HTLV II. If you do, please let me know so that I won't feel so alone with this thing.

For over two years I have been helping a relative try and survive cancer. Sadly this relative lost his battle about a month ago. As in over 40% of cancer deaths he died of cancer cachexia, not of cancer. Cachexia is simply "wasting away". My observations from this experience confirm my belief that cachexia IS the disease of cancer. Cancer cells and tumors merely represent tissue capable of surviving in an environment which is starving human cells to death.

Cancerous tumors can choke off organs and essential functions at any time, killing the victim and cutting off the development of cachexia. These premature cancer deaths obscure cachexia as the true disease of cancer.

What is clear in modern cancer treatment is the inflammation and neuropathy associated with cancer. Left unchecked, it progresses into paraneoplastic disease. Like you and your relatives, my relative had terrible neuropathy. The neuropathy progressed into full-blown neuromyotonia.

He was a serious consumer of sugar and wheat.
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autoimmune
 

Yes, I have an auto immune disease, alopecia universalis. Got it at 29, and am now almost 60. Lots of other auto immune problems since. I believe there is a connection, and Mayo clinic told me as much. The problems I have had, have been continuing all my life. Auto immune deficiency in my case. Not HIV, just a weakened immune system where I pick up any and everything virus wise, and have arthritis, DJD, DDD, ATTD disorder in my ankles. My thyroid was biopsied friday, two spinal fussions. This all is related, I know it in my bones so to speak. Ginnie:eek: we should all talk about this element, as I know for sure I am not alone in this

.
Autoimmune deficiency usually means that your antibodies are depleted from fighting disease, not that you aren't making enough antibodies.

Have you heard of treating autoimmune disease with low-dose naltrexone?

http://www.lowdosenaltrexone.org/

Naltrexone is an morphine blocking drug. In the 1980s a New York doctor tried it on autoimmune disease, and it showed promise. Now low doses taken once nightly are showing effectiveness.

The same treatment is being used against some cancers.

http://fourfoldhealing.com/2010/06/1...ach-to-cancer/

Why do you suppose a drug which blocks opioid receptors is effective against autoimmune diseases?
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Hi,

I'm a sero-negative Sjogren's whose first major symptom was small fiber neuropathy, non-length dependent, that was diagnosed by neurologists via skin punch biopsy right away because my skin was "on fire." That's gotten a lot better, but still have skin discomfort and am now completely photosensitive.

Have the dry eyes, mouth, nasal passages, airway, skin.

My neuros all have said that small fiber neuropathy is "huge" in people with Sjogren's. So the community is aware of the connection, but as there is no cure for Sjogren's, the neuropathy is only treated symptomatically with anti-depressants and anti-seizure meds. Sometimes chemo drugs are used. I'm afraid of all of them because of the side-effects.

However, I believe my neuropathy improvement is due to taking specific vitamin supplements (not herbal anything). B12 as methylcobalamin, CoQ10,
R-alpha lipoic acid (not "S"), B1 as benfotiamine. Taking too much B6 can cause toxicity, so I stay with a good multi-vitamin/mineral one a day formula.
Oh yeah, and the fish oil/Omega-3 the rheumatologists prescribed.

Lily

RA, Sjogren's, Raynauds, PN, RLS
 

I'll chime in here, too. Wish there was a cure for all of us, or that someone could trace all of these conditions to one cause.

I have classic RA, secondary Sjogren's and Raynauds, motor nerve neuropathy, and now RLS. My motor nerve problem was diagnosed two years ago when suddenly I couldn't walk. EMG showed breaks in the pathway near my knees and ankles, and continuing problems back to my spine. Not diabetic, so it must be idiopathic or somehow traced to RA or the RA biologic drug I take.

My latest problem is an atypical case of restless leg syndrome, where I have little knots crawling around in my calves at night, which eventually turn into horrible nocturnal leg cramps.

I'm on my second day of Mirapex, and hoping for a miracle.

Gramma

i have arthritis, PN, erythromelalgia, raynaud's. i too believe they are all related. PN and EM hit at the exact same time, excruciating to say the least. my acupuncture doctor says my body is full of inflammation which of course leads to the arthritis and the cycle just goes on.

Sheltiemom 18, in the past 2 months I have developed small fiber neuropathy in my hds and feet. My feet burn like fire at night and I'm very sensitive to cold. I tested neg for sjogrens but did have a positive ana 1:160 so I'm pretty sure that I have something autoimmune going on. But I do not have dry mouth, maybe a little dry eyes but I do have major Gerd. Lots of arthritic pain and I have what looks like the livedo recticuliar rash on my arms and legs. Do u have any of these other problems and how long between the SFN and the dry mouth and eyes? I see a rheumy next month.

auto immune
 

Hello to all. I am wanting a little more information on naltrexone. I have a host of less severe auto- immune diseases, gerds, alopecia universalis, degenerative joint disease, cervical disease, and arthritis that bites. I played with murcury as a child also, and have often wondered if this happened to me because of that childs curiosity. Thillieum in the ground water was another mystery stab at it from the mayo clinic. Would this drug do any thing to help my immune system? I know for sure I have a T and B lymphosyte imbalance. Apparently I have necessary immune responce, but in my case, they are mis-directed. This was an explaination given to me during the course of the last three decades. I participated in trials in my 20's with DNCB a sensitizing agent that gives the immune system a kick start with the alopecia. What is Naltrexone. Sorry all of you have such troubles too in this life. Any information I get I appreciate as I seem to be falling apart. I will pray for all of you too. ginnie sorry for medical miss-spellings ginnie

The immune system operates using leukocytes which sample element sequences of the proteins displayed by antigens. These leukocytes communicate these sequences to the thymus and spleen. The thymus and spleen create and mature new leukocytes programmed specifically to recognize the sampled antigens. These leukocytes kill and devour the antigens and the tissue which has been compromised by the antigens ....extremely exacting.

The entire process is controlled by nerves. Nerves are controlled by endorphins, the body's own pain killing narcotics. Some of the foods we eat contain endorphin mimetic proteins .....opioid exorphins. These proteins plug into nerves at inappropriate times. They cause nerves and organs to stop performing, or to perform inappropriately. When this happens in thymus and spleen nerves, it degrades immune function. The immune system is forced to dumb itself down. In dumbed-down mode the immune system ceases to discriminate between antigens, and ceases to discriminate between antigens and human tissue. The result is autoimmune disease.

Naltrexone is a drug which blocks nerve endorphin receptors. It was developed to reverse the ill effects of heroin addicts who overdose. Reportedly, after a few hours, naltrexone makes these people feel HORRIBLE. That's because it blocks both heroin and endorphin. And people require endorphin. Naltrexone's inventor got the idea of using Naltrexone on people with autoimmune diseases. It worked, but made them feel awful. Subsequently other doctors experimented with low doses of Naltrexone, taken nightly. Reportedly, it works like a charm.

Another possible drug to look into is clofazimine. Leukocytes communicate the above immune processes with thymus and spleen nerves using kv1.3 potassium ion channels. When ingested opioids make control nerves sluggish, they degrade the function of these potassium channels. Clofazimine restores potassium channel function. Clofazimine has a side effect which many people don't like. It discolors the skin .....to different degrees, and in different tones, depending on the patient.

‘Course instead of attempting to cure the problems caused by ingested exorphins you could just stop ingesting them.
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I have Trigeminal Neuralgia altho it has never been linked to my lupus. Unfortunately I can't say lupus caused it or dental trauma or just bad luck but it's here and I live with it daily. Good luck in your adventure.

Re auto immune diseases
 

Hello, and I believe as you do. there is a connection in all the auto immune diseases. I have multipal. Had a bad bad virus at 29 years old and while on the er table i felt a tingle all over and on my hair as well. In six weeks my waste lenght hair dropped out. since then it has been one after the other. Artritis, bone degeneration, joint degenerations, barretts esphogus, and of course the origional alopecia universalis. I have never been well during these years, and wind up with infections that do not cure easily. I have been to Mayo clinic, and disease specialists, nobody is making that connection. I am positive they are all related. I am now 60 and really sick with barretts esphophagus, can't control the acid in my stomach and the cells are turning up abnormal. Cervial troubles ended with bad cells too in which my hysterectomy took place. All in all I hope to find people here to with multipal problems in their bodies. I wish you all the best and I hope a thread can be started for multipal auto immune conditions. I also pray for this site. do write any time. I am changing services, but I will be back around. ginnie

I am so glad I found this talk. I also have neuropathy and progressive muscle disease along with UCDT that they first told me I had lupus then scleroderma, I have microscopic colitis for which I have been in a flare for two months, I am hypothryoid, Reflex, Raynauds, photosenstive just to name a few of my autoimmune problems. I am on my way to a teaching hospital to get a second opioion. So when I seen this forum I was like yes, nobody esle gets it. I do have to ask what you girls take for the neuropathy? I am on a pill for anti siezures called carbamazepine anyone else on this? Also do not want to take predisone. I have issues with that.
Right now, I am having new symtpoms of burning scalp it is really bothersome it feels like when you were a kid and your ponytail was pulled to tight, sort of. I am thinking it is a neuropathy thing. But cannot find a lot of info on it.
Thanks again for letting me add my two cents.
Susie

Maryec, I have the same dx as you. I have connective tissue disease with features of lupus and scleroderma. What meds are you on? Do they consider your myopathy progressive? They do mine and it seems to be progressing more than I thought. Any input would be great.
susie

Hi Kami, I hate to say that I was happy to see someone else with the immune type of colitis, I have the same. When I talk about it nobody knows what I am talking about. I also have neuropathy, progressive muscle disease, they teseted me for MS I have UCTD with features of lupus and scleroderma.
May I ask what you are on for the collagenous colitis? I have had a two month flare they are trying everything, wants me to go on steriods, but I do not want to, hear too many bad things about it, plus I do not need to gain anymore weight. You would think with the colitis I would lose, but now me. I also have hypothryoidism immune style. I was not gettingenough synthroid so they just upped it, hope that helps with the weight too.
Hope you are feeling well,
susie

Supplement specifics
 

Hello, Lily. I also have peripheral neuropathy related to Sjogren's - about 4 years. I have tingling in arms and legs as well as pains that some and go all over my body. I'm very interested in your supplementation regimen. Just recently I've discovered that B-12 seems to stop some of my pain and weird numbness sensations. But it think I'm needing a crazy amount like 2000 mcg at least daily. I've tried the benfotiamine a couple of years ago and still have some, so I'm thinking of trying that again. Will you please give specifics on your dosages and some of the your logic and experience with these supplements. I would be so so grateful for your sharing!

Thanks so much, Michelle

Autoimmune and Pain - neuropathy
 

I was diagnosed with primary Sjogren's syndrome in 1998. Then short time later I noticed numbness in my toes and then feet. Have a sensory neuropathy, which EMG could not diagnose, because its short fiber neuro. It affects my balance, which is difficult to tolerate. Try and do exercises for that, does anyone know any good ones for balance? I also have autoimmune thyroiditis. I use gabapentin, and locally lidocaine ointment on feet.