Neuro said my neuropathy "doesn't exist."

[MAT51]

The only difference between primary and secondary Sjogren's is a patient with primary ONLY has Sjogren's as a rheumatic/autoimmune disease...whereas secondary Sjogren's is when a patient has another rheumatic disease (RA, Lupus, etc)  I'm not sure why they would call your Sjogren's as primary MAT, since you have RA.  Technically, you have two rheumatic diseases and Sjogren's should be secondary.  But that in no way lessens the severity of your Sjogren's!!

There is NO difference in severity of symptoms between the two...as Sjogren's in either case can range from mild to severe.  And both can have neuro manifestations.  This is from the National Institute of Health:http://www.niams.nih.gov/health_info/Sjogrens_Syndrome/default.asp

Great link Anita thanks - slightly different info on the distinctions between secondary and primary to the other published  material I've read. But I found this paragraph especially useful having been told off by a visiting friend for not drinking enough today ie litres - when I knew that I would be running to the toilet continually otherwise!

"Water. Take sips of water or another sugar-free, noncarbonated drink throughout the day to wet your mouth, especially when you are eating or talking. Note that drinking large amounts of liquid throughout the day will not make your mouth any less dry and will make you urinate more often. You should only take small sips of liquid, but not too often. If you sip liquids every few minutes, it may reduce or remove the mucus coating inside your mouth, increasing the feeling of dryness."

[MAT51]

Anita - Here is just one example of why I thought that primary was usually more severe of itself.

http://www.mollysfund.org/2014/04/sjogrens-syndrome/

"When occurring alone, Sjögren's syndrome is known as primary Sjögren's syndrome (Primary SS) and when it occurs along with another connective tissue disease it is considered to be secondary Sjögren's syndrome (Secondary SS).People with secondary Sjögren's tend to have a milder form of the condition. However, they also must deal with the symptoms of the coexisting or 'overlap' disease. The most common condition occurring with secondary Sjögren's is rheumatoid arthritis."

[trc1962]

I think the confusion lies in that the rheumy calls it "primary sjogrens" but the neuro says he doesn't agree. Basically my eye test was positive but my lip biopsy "looks like a sjogren's patient" it just doesn't check every box and the neuro says that is not a positive result in his book. I saw my rhuemmy today and it wasn't helpful. I told him I can't go to the bathroom for sometimes days at a time, that my stomach won't empty and that the sexual part of me "does not work" and he said if it was autonomic neuropathy then my punch biopsy would have been positive so it cannot be that. I asked him to ask for the EMG but he says I should pursue it in Seattle at the end of September...just hoping that there is a cancellation soon. I have no doubt that I am dealing with neuropathy like I have before, it is just at a higher level this time, he just can't even entertain that idea in his head because of the non positive punch biopsy.

[Dawnmist]

It was my understanding that autonomic neuropathy was tested more with a sweat test (QSART) and tilt-table testing, not by the punch biopsy. The punch biopsy tests damage to the sensory small fibres - I thought that it wasn't always the case that autonomic neuropathies result in peripheral ones.

[MAT51]

It just sounds like a situation I've been in for a few years now but am really hoping not to be in anymore.

Basically it is my understanding that the punch biopsy is not always 100% reliable because the tissue sample can be affected by temperatures during transportation - and also the neuropathy may not yet have caused damage to the small nerve fibres in the part of us it was taken from?

Mine were taken from each of my calves by my GP (primary doctor) over a year ago - and only one from each leg. He sent this away but couldn't be sure where it might go once in transit. Maybe not that reliable!  However, even though the pain has since progressed to numbness, I wouldn't particularly want more taken now just to prove a point. Like you I've got severe constipation and gynae issues, heart arrhythmia, and an having strange sweats/ low grade fevers and swings in BP plus disequilibrium that are a mystery which would be more or less solved by a diagnosis of Sjogren's. I think I have some Dysautonomia rather than full blown PoTS.

But my eyes and mouth were not dry enough,when tested, to warrant the neuro or rheumy running further tests for SJS. But since then I've moved to a bigger hospital and was told by an oral consultant that Sjogren's can affect the nerves and other parts before it affects the mouth or eyes (which are still dry - but not dry enough!). She explained that the lip biopsy my rheumy had requested is the only definitive test for Sjogren's. I don't yet know what the rheumy or neuro will have to say about this. But I'm really hoping she is right. Otherwise I don't see what the point of having invasive tests is if a positive result (ie too many lymphocytes in each salivary gland) is inconclusive?  I will let you know what my rheumy says next week. I see an endo in same hospital (thyroid related) the day after so perhaps he will be able to shed some light on things as well.

[anita]

MAT,

The link you attached is a blog, not a medical professional site.  Even though they basically said the same thing about primary being alone and secondary when accompanied by another rheumatic disease.  The "tend to have a milder form..." statement sounds very much like an opinion.  Of course, many people to have mild symptoms...in cases of BOTH primary and secondary.  it really all depends on the patient and their condition.  The word 'primary' makes it seem like it is the basis/core of the condition...when in fact, it only means that it represents that the patient only has ONE rheumatic disease process (and both the blog and medical professionals confirm this aspect of the 'primary' word definition in this case).  There is no medical data that shows one being more severe than the other.  One could actually argue that secondary would be more severe because you are dealing with more than one autoimmune process (and two must be worse than one)..but that really isn't true either, as it still goes back to the individual patient and how every case is different in severity and complexity.

My lip biopsy states in writing that my degree of damage is consistent with "Sjogren's at end stage".  I have had 3 strokes from APS (another autoimmune process), 100's of TIA's, psoriatic arthritis, severe autonomic neuropathy requiring pacemaker and 4 daily heart meds, confirmed ganglionopathy with bilateral dorsal root enlargement, nephrogenic diabetes insipidus (NOT sugar diabetes), adult onset asthma, CVID (primary immune deficiency)...and the list goes on.  Clearly severe Sjogren's...and everything can in one way or another be tied back to the Sjogren's.

I used to be listed as Primary Sjogren's...but now that can be argued, due to the confirmation of the inflammatory arthritis (psoriatic arthritis, which is autoimmune based) and my APS diagnosis (another autoimmune process).  Yet, I can assure you that every one of my doctors considers my case to be severe.  The only reason I list all my conditions and comment on this is because it really doesn't make a difference whether it is primary or secondary...and don't let anyone tell you that your condition isn't as severe, or is more severe just because of the title!!  Every single medical condition out there (everything) can be mild or severe...whether it be MS, RA, Lupus, cancer, or diabetes!  Your condition has some 'severe' components, based upon what you have shared with us...so regardless of what your 'title' is, I would say your Sjogrens is likely moderate to severe.  I hope this makes sense.

Actually, I good doctor just calls it Sjogren's and deals with the components each patient has.

[irish]

I am so glad that you got into the doctor in Seattle. Great that they will charge less. That doesn't always happen.

As Jasper said, adding any new meds can really screw up the results of testing as you may present differently than would be normal. Also, the gluten intolerance---did you have testing to rule out Celiac sprue?? My hubby had the Celiac sprue and there is neuropathy and a ton of other stuff that goes along with the sprue. Why don't you do a search on gluten sensitivity and see what types of other symptoms can accompany this. It might give you some more talking points to address with the new doctor.

I hope they can address all the symptoms you have mentioned. This neuro you have seen doesn't sound too interested in finding out what it wrong with you. Does he treat you like it is all in your head? If he does tell him the whole autoimmune community says "shame, shame on you". Doesn't it just frost you to have these docs put you off like this. I had this done for 40 years or so before diagnosis. I always told the docs I had places to go and people to see and didn't have time for all this stuff. they still though I was a psycho.

Good luck to you and be sure to keep us updated on how things go. Irish

[anita]

It just sounds like a situation I've been in for a few years now but am really hoping not to be in anymore.

Basically it is my understanding that the punch biopsy is not always 100% reliable because the tissue sample can be affected by temperatures during transportation - and also the neuropathy may not yet have caused damage to the small nerve fibres in the part of us it was taken from?

Mine were taken from each of my calves by my GP (primary doctor) over a year ago - and only one from each leg. He sent this away but couldn't be sure where it might go once in transit. Maybe not that reliable!  However, even though the pain has since progressed to numbness, I wouldn't particularly want more taken now just to prove a point. Like you I've got severe constipation and gynae issues, heart arrhythmia, and an having strange sweats/ low grade fevers and swings in BP plus disequilibrium that are a mystery which would be more or less solved by a diagnosis of Sjogren's. I think I have some Dysautonomia rather than full blown PoTS.

But my eyes and mouth were not dry enough,when tested, to warrant the neuro or rheumy running further tests for SJS. But since then I've moved to a bigger hospital and was told by an oral consultant that Sjogren's can affect the nerves and other parts before it affects the mouth or eyes (which are still dry - but not dry enough!). She explained that the lip biopsy my rheumy had requested is the only definitive test for Sjogren's. I don't yet know what the rheumy or neuro will have to say about this. But I'm really hoping she is right. Otherwise I don't see what the point of having invasive tests is if a positive result (ie too many lymphocytes in each salivary gland) is inconclusive?  I will let you know what my rheumy says next week. I see an endo in same hospital (thyroid related) the day after so perhaps he will be able to shed some light on things as well.

I have read an article (posted on NeuroTalk) about problems with transit for skin biopsies.  This was an isolated company issue...that was properly dealt with.  I don't think it is an issue that is common or one that a patient should be worried about. 

I will say that a skin biopsy needs to be done from more than one site...on each leg.  It is impossible to determine whether the SFN is length, or non-length dependent if only one site on each leg is done.  The calf is also not the best place to do the biopsy...it is most common to do the ankle, just below the knee, and thigh.  I can't remember whether your biopsy was positive...but I would certainly have it repeated with the proper protocol.  All depending on when you had yours done last, it may also now show confirmation of progression (if the density is even lower)...which could be important for your treatment options.

Dawnmist is correct...an autonomic neuropathy Dx is done primarily by QSART, tilt table, and other autonomic testing.  The skin biopsy just confirms autonomic fiber involvement...not the degree of problem or resulting symptoms for the patient.

[MAT51]

MAT,

The link you attached is a blog, not a medical professional site.  Even though they basically said the same thing about primary being alone and secondary when accompanied by another rheumatic disease.  The "tend to have a milder form..." statement sounds very much like an opinion.  Of course, many people to have mild symptoms...in cases of BOTH primary and secondary.  it really all depends on the patient and their condition.  The word 'primary' makes it seem like it is the basis/core of the condition...when in fact, it only means that it represents that the patient only has ONE rheumatic disease process (and both the blog and medical professionals confirm this aspect of the 'primary' word definition in this case).  There is no medical data that shows one being more severe than the other.  One could actually argue that secondary would be more severe because you are dealing with more than one autoimmune process (and two must be worse than one)..but that really isn't true either, as it still goes back to the individual patient and how every case is different in severity and complexity.

My lip biopsy states in writing that my degree of damage is consistent with "Sjogren's at end stage".  I have had 3 strokes from APS (another autoimmune process), 100's of TIA's, psoriatic arthritis, severe autonomic neuropathy requiring pacemaker and 4 daily heart meds, confirmed ganglionopathy with bilateral dorsal root enlargement, nephrogenic diabetes insipidus (NOT sugar diabetes), adult onset asthma, CVID (primary immune deficiency)...and the list goes on.  Clearly severe Sjogren's...and everything can in one way or another be tied back to the Sjogren's.

I used to be listed as Primary Sjogren's...but now that can be argued, due to the confirmation of the inflammatory arthritis (psoriatic arthritis, which is autoimmune based) and my APS diagnosis (another autoimmune process).  Yet, I can assure you that every one of my doctors considers my case to be severe.  The only reason I list all my conditions and comment on this is because it really doesn't make a difference whether it is primary or secondary...and don't let anyone tell you that your condition isn't as severe, or is more severe just because of the title!!  Every single medical condition out there (everything) can be mild or severe...whether it be MS, RA, Lupus, cancer, or diabetes!  Your condition has some 'severe' components, based upon what you have shared with us...so regardless of what your 'title' is, I would say your Sjogrens is likely moderate to severe.  I hope this makes sense.

Actually, I good doctor just calls it Sjogren's and deals with the components each patient has.

Anita I defer to your great knowledge, gleaned through awful first hand experience and suffering. Take care. Mat x

[trc1962]

The neuro I saw is supposed to be the "neuropathy" guy in our area and no, he just didn't seem interested in me. 12 years ago when my husband had a stroke he was the doctor on call in trauma and assigned to us and unfortunately we didn't hit it off real good. He remembers me unfortunately and sees me as overly concerned in all situations. Therefore the need for some help from Seattle and the right to a second opinion. I am gluten sensitive but have never shown antibodies so they don't call me celiac, but gluten is terribly poisoning to me and causes the neuropathy quite badly. I avoid the stuff like the plague. My mom is celiac and my brother also gluten sensitive, so it is a family thing. I have racked my brain thinking of dietary things that could have set this off and can only come up with one possibility; I eat oatmeal sometimes for breakfast and have always eaten the "gluten Frieda" brand and done well. However, this spring I switched to Trader Joe's gluten free whole grain oats because they had more fiber to help with constipation. In June my mom said she just can't eat oats no matter how gluten free they are so I cut those out. Did that set me off? I don't know. I do know that I started having inflammatory issues over a year ago in my blood work like high readings on homocysteine levls and HSCRP and then a high TSH and this concerned me. I then developed ear ringing and sensitivity and then facial inflammation and scalp issues and it all got better when I really cut back on histamine high foods and took antihistamines. Makes me think some of this could be related to a mast cell disorder as this can cause neuropathy and my thyroid needs to be probably medicated also (but endo says wait until off prednisone and we will test). So, lots going on and I am really thankful for a second opinion. I am also thankful I am sleeping at night as that helps so much - Cymbalta wouldn't let me sleep so got rid of that and doing better with sleep. Thanks and happy Saturday to all.