I was diagnosed with Sjogren's and lupus when I was 31 after the birth of my daughter. After years of a multitude of symptoms, and also suffering from an immune deficiency and receiving new immunglobulin I have a new symptom that is bothering me. The last six weeks I've had some weird things happening in my feet. It started with a pulled back muscle that happened during a work out and I had muscle spasms for 12 to 14 days, I then began overcompensating and hurt my left foot, relatively easily, and begin having a lot of tingling and pain in my foot. I went to physical therapy and it got better. Then I was in almost a head on collision and slammed the brakes as hard as I could and suffered a large bone bruise on my right foot which then led to my right foot being sore and tingling for weeks, which I went to therapy for and that got better. Both were relatively still healing when I had an incident in the store where I almost ran into a man and I jumped onto my left foot hard to stop my cart from hitting him and seemed to reinjure it very easily. I am now having numbness and tingling in both feet when I went to physical therapy they said it was plantar and perhaps a bone bruise but I have the aggressive antibodies for SSA and SSB as well as autoimmune ANA's and was told when I was diagnosed by Dr. Fox at Scripps clinic that I would have an aggressive course of Sjogren's. I have not had any neuropathy that I can think of except for one summer while in a flare whenever I would walk on the treadmill my feet would hum and vibrate for hours afterwards. Does this sound like a neuropathy? Can they come and go like could I have them during a flare and then they go away or are they on going? I mean do neuropathy's start after an injury, is that a possibility or do they always just start out of the blue? I would rather this obviously not be a neuropathy but after six weeks of symptoms and knowing my autoimmune issues I was hoping to get some clarification.
Hi
Please check your vitamin b12 levels. If low take b12 supplements.
Your symptoms seems unlikely to be neuropathy. Also 80% neuro-sjogren patients have ssa ssb negative.
I was diagnosed with Sjogren's by Robert Fox at the Scripps clinic and two other doctors. Fox was considered to be authority on Sjogren' and wrote mch of the literature on Sjogrens. I have lost on my teeth due to dry mouth and have dentures, have symptoms of lupus and sjogrens achy joints, major fatigue, and much more I have read a recent research that indicates people with SSA and SSB have a Sjogren's lupus mix and the Sjogren's is more systemic and less of typical dry eyes and dry mouth. Stars earlier and worse disease process. I think this is some type of neuopathy. My doctor told me years ago, that I had a 70% chance or higher of getting CNS involvement due to my titers and low C3 and rheumatoid factor. When I took steriods for a trip to vegas my feet got much better, which I find odd, because I am on 10, but my doctor upped my to 15-20 because I broke out in a butterfly rash while in vegas bad and when I raised my steriods the feet got 90% better.
From one article there are many: Antibodies to Ro (SSA) and La (SSB) cellular ribonucleoprotein complexes are found in the circulation of patients with Sj?gren's syndrome (SS), mainly in those with the primary form of the syndrome. Their presence is associated with long disease duration, earlier disease onset, parotid gland enlargement, systemic manifestations and also with hypergammaglobulinemia, rheumatoid factors and monoclonal type II cryoglobulins. While anti-Ro (SSA) antibodies are not specific for SS, anti-La (SSB) antibodies seem to be specific. Studies of HLA class II molecules in Ss patients with and without these antibodies have shown that their production is under genetic control. Finally, there is no conclusive evidence relating pathogenetically these autoantibodies to tissue destruction in SS.
Quote from: mollie carey on June 21, 2018, 08:36:48 AM
I was diagnosed with Sjogren's by Robert Fox at the Scripps clinic and two other doctors. Fox was considered to be authority on Sjogren' and wrote mch of the literature on Sjogrens. I have lost on my teeth due to dry mouth and have dentures, have symptoms of lupus and sjogrens achy joints, major fatigue, and much more I have read a recent research that indicates people with SSA and SSB have a Sjogren's lupus mix and the Sjogren's is more systemic and less of typical dry eyes and dry mouth. Stars earlier and worse disease process. I think this is some type of neuopathy. My doctor told me years ago, that I had a 70% chance or higher of getting CNS involvement due to my titers and low C3 and rheumatoid factor. When I took steriods for a trip to vegas my feet got much better, which I find odd, because I am on 10, but my doctor upped my to 15-20 because I broke out in a butterfly rash while in vegas bad and when I raised my steriods the feet got 90% better.
From one article there are many: Antibodies to Ro (SSA) and La (SSB) cellular ribonucleoprotein complexes are found in the circulation of patients with Sj?gren's syndrome (SS), mainly in those with the primary form of the syndrome. Their presence is associated with long disease duration, earlier disease onset, parotid gland enlargement, systemic manifestations and also with hypergammaglobulinemia, rheumatoid factors and monoclonal type II cryoglobulins. While anti-Ro (SSA) antibodies are not specific for SS, anti-La (SSB) antibodies seem to be specific. Studies of HLA class II molecules in Ss patients with and without these antibodies have shown that their production is under genetic control. Finally, there is no conclusive evidence relating pathogenetically these autoantibodies to tissue destruction in SS.
also one other article: According to the ACR criteria, the diagnosis of Sj?gren syndrome requires at least two of the following three findings: Positive serum anti-SSA and/or anti-SSB antibodies or positive rheumatoid factor and antinuclear antibody titer of at least 1:320. Ocular staining score of at least. I had all of these with ANA of 1:800
Doctor Fox is who diagnosed me and had never seen at that time a patient with my levels of antibodies age, here is some information he has written. http://www.robertfoxmd.com/SjogrensByFox/SjogrensByFox.php
If anyone can tell me how PN starts in you feet and can it come and go or it is always progressive?
Dearest Mollie,
I advise patience. I know this is hard. If you have neuropathy, a neurologist will conduct the tests that make the diagnosis.
I too have Primary Immune Deficiency Disorder (CVID) and have IVIG every four weeks (four years so far).
The good news is that there are some medications that can ease the discomfort of Peripheral Neuropathy.
The bad news is that there is nothing known now that will stop or reverse the course of neuropathy, if it is related to your Immune Disorder, Sjogren's.
There are many people that will claim that they can 'cure' or 'reverse' neuropathy. As far as I know (and I have profound PN, severe SFN (small fiber neuropathy) and other neuropathies) there is no cure or reversal of these neuropathies.
There is no rush to do anything, Mollie. The medications that ease the discomfort are Gabapentin, Lyrica and others in that category.
Keep us posted.
Hugs, and best wishes, Elaine
I take Gabapentin for things, but my left foot or more specifically my toes on that foot have less sensation. I don't know what is causing it. I have diabetes too, but that is usually watching for sore on feet or legs. My toes get cold even in the hot weather. I always wear socks. A doctor can put a needle on my toes, and I can feel that sharpness, but inside my toes there is a lessening of their feeling and like the circulation is not there.
susanep
Thanks so much for answering me. I went to my regular doctor who said it could be but all the test he did were normal, but he said it could be in the beginning, but did not seem like it the way it happened after an injury. I have read they use IVIG to treat, PN, has that helped yours? My doctor said it can come and go in flares. But other places I read it is chronic? meaning it does not stop. But during a flare 3 years ago and 1 year ago I had symptoms of PN in my feet and it went away as the flare did.
Does neuropathy act this way? Does what I am saying sound like a PN?
Thanks again!
Mollie
Dear Mollie,
I recommend patience at this point. Keep track of your symptoms, and any behavior (such as using a treadmill or pulling a muscle, or having an accident).
There are many possible reasons for numbness, pain and tingling in your feet. The symptoms need to persist and perhaps increase in intensity for any attempt to be made at a diagnosis.
Keep in touch with your doctor.
The IVIG for treating PN is much more intense (stronger doses administered very frequent). It has never been considered for my PN, since it is profound (the nerves are completely unresponsive) and the nerves cannot be restored at this point.
Wait and see what happens.
Regards, Elaine
I read that IVIG in the beginning of PT in several studies, stops the progression and to get a dx early for that reason. I know it will progress if it is PN, but I also have been told it can go an come and just trying to get answers from people who have dealt with it.I just hoped some others could share how theirs started and if my case sounded like PN?
and Elaine when you say nerves are unresponsive? can you walk, I mean how has the damage affected your life and what is the hardest part?
Is it neuropathy - your neurologist is probably the best Dr. to answer this question. With all the injuries you've sustained it could be related to general inflammation.
I have neuropathy and it's probably related to low B12 which in retrospect was due to undiagnosed Celiac's disease in my case. When I saw the neurologist not only was I shocked to discover I had extensive neuropathy, but I had bilateral foot drop (facepalm, shocked I didn't notice it when I did notice the toes of my shoes were getting scuffed up and I kept hitting things) and an abnormal Babinski sign response. Low B12 also affected my brain - caused runaway anxiety etc. I now take megadoses of methylcobolamin B12 and get blood work to check my levels.
If you do have neuropathy - getting my B12 levels back up resolved my foot drop - I now walk normally, but I still have neuropathy and an abnormal Babinski sign response. As for the pain, burning, tingling from the neuropathy - I don't have that anymore since I switched my diet.
Quote from: mollie carey on June 24, 2018, 08:21:12 PM
I read that IVIG in the beginning of PT in several studies, stops the progression and to get a dx early for that reason. I know it will progress if it is PN, but I also have been told it can go an come and just trying to get answers from people who have dealt with it.I just hoped some others could share how theirs started and if my case sounded like PN?
It seems like neuropathy can be stopped with immunosuppression if treatment is started early enough.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5586125/
My pain use to come and go. Now the pain tingling burning is relentless. I push through because I have such adverse reactions to meds. When flaring as well the prednisone gives me relief for the moment. Most times when horrible i walk with assistance. There are some herbal supplements that helps but since it's so expensive i have to take a two month break to save to get some more. It's hard living like this but beats not living. Keep reading and learning but don't stop moving . Keep pushing.
Regarding IVIG, most of the cases of neuropathy that show improvement with IVIG, seem to be specifically either demylenating neuropathy, or specific to neuropathy caused by a virus such as Guillian Barre, put that's not to say results couldn't be produced in other cases.
I'm mostly basing that observation on experience with therapeutic plasma exchange therapy, and it's use in demyelination syndromes, and some anecdotal references from my work experience. I haven't actually had time to research it.
There can be so many causes of neuropathy, from mechanical, such as nerve damage from injury vascular compromise, to chemical such as found in diabetic neuropathy and possibly viral mediated, to small fiber neuropathy which is probably more of a cellular dysfunction. Add to that the various locations of injury that can result in neuropathy in areas that don't even seem related to the area of injury ( central damage in the brain can result in nephropathy just about anywhere; radiculopathy from the area in the spine where the nerves exit the spinal cord and travel through the spine can effect all areas served by that particular nerve bundle; and local nerve damage in the immediate area of the neuropath).
Neuropathy isn't something to speculate about, it requires a good neurologist to get a proper diagnosis.
I went to my doctor again yesterday. He says because i have injured both feet requiring xrays in the last 6 weeks along with pulling a back muscle he still feels this could be injury driven, and I am in PT. He said neuropathy's usually are worse at night, and my symtpoms are gone at night and feels they are more tied to injury to the foot and muscles, but if it does not resolve in 4 weeks, or worsens he will do nerve conduction tests and I will see Neuro doctor. He said injury could flare up a mild neuropathy that I dont know I have and then when foot heals it could go away or stay also. He is not sure. My testing for feeling the cotton ball and all the ones in his office were normal.
Mollie take your doc's and advice and that of others if you can and be patient. EMG is the way to test for neuropathy and I hate to say it, but it is painful. That said, my neuropathy came on slowly and then for some reason neither I nor docs, including a top-notch neurologist, understand accelerated. Gabapentin is a godsend.
Here's hoping P
Can I ask how yours started, and what your symptoms are now?
SjoGirl
Mollie, numbness and tingling in feet, hands and even head. Some amount is from nerve damage in my neck, but the cause of the rest is undiagnosed.
As for how it progressed, I would say slowly and without any sense that anything was happening. That is until I found myself dropping things, culminating in smashing a glass container on a counter after I took it out of a cupboard, unbeknownst to me, I did not have the handle on it that I thought. I then had EMG which showed neuropathy all up and down my left side. I don't know about the right, they have not tested. FYI while I have widespread neuropathy it is not yet severe. Will it progress, who knows? I read a good book about PN which basically said it is little understood and not well treated. The most research has been done with diabetics, but I don't have diabetes.
So how long have you had it. My tingling started with injuries to my feet and my doctor says any inflammation can irritate the nerve and take a while to calm down. I just have it in my two feet I hurt, does not get worse at night, and mainly one foot now. When you say come and go, do you mean like for months, days, years?
Molly, I know that your life is all upside down now and this pain has you reeling. However, being patient is the key as someone else mentioned. There is no way that a diagnosis can be done overnight as the autoimmune stuff is so darn complicated and it changes from time to time.
The fact that we have autoimmune means that we live with iinflammatory stuff going on in our body all the time. So often something that will heal in a couple of weeks or months will take longer because of our inflammatory issues.
We are all different and there is no way for a doctor can predict exactly what is going on and how long it will last. With any injury in someone with autoimmune issues the inflammatory issues influence the muscles, ligaments and tendons and often there is nothing that can be seen on scans, etc. Blood work wo't show anything either. Then there is the fact that even people without autoimmune issues can have an injury that will take forever to heal no matter what the doctor does or tells you to do. It is just the part of life that shows up and lets us know that we really cant control or predict the future.
The best thing to do is to hunker down and take care of yourself and limit your activites so that you will enjoy the things that you are able to get to. I have reached a time in my life the past 4 years where no matter what I seem to do, either fun or work, I tend to have an injury that is muscle, tendon or ligament related and I am bogged down with pain, couch, hot packs or cold packs. I am 75 years old and had a surprise last fall with a MRI done because of burning in my hands. Sounds like carpal tunnel, right.
Well it was a disc pressing on my spinal cord and but I had no pain in neck or headache. The level was C4C5 close to the base of the brain. My neurolgist( she was so surprised also) told me surgery or I very well could be paraylzed in much of body or I could die. That was an awakening so surgery was done...titanium plate over spine with 4 screws and a cadaver disc to replace the old one. Life isn't the same but I am not paralyazed or dead. The bottom line is if we get too stressed out about much of anything when we have autoimmune disease we tend to suffer more. I will suggest that an antidepressant at bedtime can be used to treat pain and they really do help with pain and sleep. The meds tend to decrease the irritability in the brain chemicals brought on by the stress of an injury or other events.
I hope that this pain and anxiety can be decreased and life will improve. Just take a deep breath and exhale when things overcome you. It really does help as I have to do this often. Irish
Actually the wedding is over and I am pretty calm. I am not in pain, I have numbness and tingling. I greatly appreciate the responses people have shared with how their neuropathy came on. I don't know much about neuropathy and so anyone who is comfortable sharing how theirs occurred and progressed is giving me helpful information, since I have aggressive lupus and Sjogrens and many others issues. I believe being informed is power, and I think we have to have to advocate on her own behalf and I do that by asking questions on this forum is a great place since obviously many people who have the same issues and other issues I would like to know about. I have had doctors miss many things with me also. They missed a brain aneurysm, a broken back, a complete punctured lung which could've killed me, and countless other mistakes and I am 54 so I imagine by the time I am your age~ if I am that lucky I will have much more things they miss or get wrong. I don't think there are test for many things. That is why I asked for people's experience with neuropathy because I do I think I may have it and I just want to know what it is been like for other people. I realize this could be an injury as I have said, and of course that is what I'm hoping for but I still have had other episodes of vibrating and humming in my feet so I feel it's best to be informed and know what to look for.
I don't mean to sound panicked, but I do want to hear from people re: their experiences. I do yoga to relax and listen to Indian music from a friend, and this is not an anxiety issue, it is me looking for information. Usually only doctors have made me feel my issue is I need to calm down, until they find a serious issue and then they are silent. I am sorry you have been through so much Irish, this is not a fun journey, I have been sick seriously since the birth of my daughter when I was 32, and from what I read here many people have had terrible health issues to overcome. That is why I posted here, because I felt people would understand.
You came to the right place because we do understand about all the suffering and uncertainty. I know that I have been dealing with all this stuff since 1964 and like you and everyone else on this forum, have had many missed diagnoses, doctors who have told me to get a psych eval......actually I think a lot of them need a psych eval because they don't listen to the patient.
In nurses training we were always taught to listen to the patient. Surprisingly some doctors seem to think they know more about our bodies than we do. Pardon my whining. The good thing is that after all the chasing around and expense I finally have a good team of doctors to the grand total of 11 specialities....plus some surgeons who wander through from time to time. Thankfully I don't have to see them all in the same month, but like the
rest of you calendars get bogged down from time to time with appointments.
I am glad that you are not having much pain but know that the neuropathy symptoms can really get to you. The thing with Sjogrens is that we can have transient neuropathy and I think the doctors don't always take it seriously. Years ago I had 2 years or so of burning and pain in my feet and lower legs. When I put my feet in the bath water the warm water would send me up the wall with pain. My doctor didnt believe me. I would wear TED hose at night and sock and take Aleve at bedtime to help me deal with the pain. That eventually left and that bad leg pain never came back...however the pain in feet still visits off and on.
It is almost like we get the symptom and it has to burn itself out or run its course. Doctors have a hard time interpreting the small fiber neuropathy that Sjoggies can get. If you go to John Hopkins website and do a search for Dr. Julius Birmbaum and the Sjogrens clinic you will find some good information.
He is or was the only neurologist-rheumatologist in the US at one time a few years ago. Very smart and very good. When he firsy started his Sjogrens clinic at Hopkins he spent time on this site answering questions and informing us and many others of his new venture in neuro with Sjogrens. Do a lot of searches for small fiber neuropathy in autoimmune disease and in Sjogrens and lupus.
When you read all the good articles about small fiber neuropathy the symptoms are pretty specific, However, I am of the opinion that a person can have a whole lot of neuropathies related to heaven knows what. In the end it can affect us in so many ways that it is even hard for us to try and explain it to the doctors. The best we can hope for is for doctors to take us seriously and that we can find good ones who listen to us and that we can feel comfortable communicating with, Don't give up. Use heat and cold to treat some of the aches and pains. It is amazing what the change in temperature does.
Also, I have having a lot of pain in my hands and fingers from neuropathy and have found that wrapping my hands fairly tightly in a hand towel or a blanket places pressure on your skin and tissues. This pressure seems to sort of calm down the pain. I think that the pressure plus the warmth sort of interferes with some of the pain receptors. It does help. I discovered this out of desparation as I can't take the gabapentin or pain meds. Take care and good luck. Irish
Thank you for all of that great information, and I will for sure read up on what you've told me about here. As I said my doctor isn't convinced this is a neuropathy because I don't have pain and is not worse at night~ we will see with time it sounds like, I injured both my feet a few weeks apart~ so that is made hard to figure out what is going on. Another doctor told me that injury can flare neuropathy.
I know doctors like to blame a lot of things on our psyche, and it gets very old~ I think they're taught to look at anxiety first but most of the time anxiety is caused by symptoms anyways, and I have grown not to always trust all of their exams because I find sadly they are just people with medical degrees, they are not perfect and it depends on the person and how much they study and what kind care they really want to extend the patient.
Anyways thanks for this great information I will look into this article and hope that my feet calm down. Thank you for the suggestions also about dealing with pain if I come to that I will for sure remember what you said,.