My feet??? is this neuropathy

[mollie carey]

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.

[happylife]

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.

[mollie carey]

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.

[mollie carey]

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?

[Carolina]

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

[susanep]

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

[mollie carey]

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

[Carolina]

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

[mollie carey]

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?

[mollie carey]

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?

[Skylar]

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.

[vniskasa]

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/

[angeldancer]

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.

[Linda196]

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.

[mollie carey]

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.