Hi, got the results of my small fiber neuropathy skin punch biopsy and the neuro's ARNP said simply "your small nerve fibers are within the normal range for your age and therefore you don't have small fiber neuropathy." I am frustrated as I have been the entire Summer with lack of answers as to why my legs and arms are hurting and feel very weak. There is nothing I would like more than to not have small fiber neuropathy (or whatever) but I sure wish there were answers. The neuro said "no reason for an EMG either." Where do I go from here? I want someone to test my vitamin levels and make sure I am absorbing them - I have always had a hard time with that due to being gluten sensitive. Any advice is appreciated.
Are you taking Vit B 6, by any chance? It can cause nerve pain.
I, too, had normal results on an EMG and punch biopsy done at Johns Hopkins. However, the doctor said that clinically my symptoms are most consistent with a mild form of small fiber neuropathy. His recommendation was Lyrica and if not resolved, IVIG.
My local rheumatologist had already prescribed Lyrica based on my symptoms. So it might be helpful to get a second opinion or see if you can find someone willing to treat you based on your clinical presentation. Do you have a Sjogren's diagnosis?
That sounds extremely frustrating, and I'm sorry that your doctor seems to be dismissing your very real symptoms.
I don't currently take b-6 just a b-complex liquid sublingually. I don't have a sjogren's diagnosis although the doctors call it "primary sjogrens" based off a positive eye test and a mildly positive lip biopsy, sicca symptoms and neuropathy that has come and gone with prednisone and aziathiaprine since 2003. I think I have a form if chronic inflammatory demyelinating polyneuropathy based on the symptoms I have that match up to another gal who also had to demand an EMG and IVIG has helped her for 4 years + 500 mg cellcept daily. I am seeking a referral to Seattle to hope to get some things done. Hope to have vitamin levels checked, check that I actually make intrinsic factor, help with thyroid issue and anything else they want to do. I have autonomic issues as well, hypersweating (like always), shut down bowel - like I have tried it all and can't go to the bathroom, my stomach doesn't empty and gets enormous, my eyes don't dilate right to the light correctly and I feel "head heavy" at times. This has been coming on for a year and somewhere there are answers. Now if my insurance will just get me approved. Happy Monday to all and hope everyone is doing okay with the Summer heat.
An EMG is ALWAYS warranted if you have these types of symptoms. The skin biopsy only checks for small fiber neuropathy and the EMG checks for large fiber. So they can't eliminate the other test just because one was negative....since they check for very different things. It's amazing that neuros can try to blow smoke in order to dismiss the patient because they don't have the time or desire to help them. I'd suggest you tell the doctor that you still want the EMG to check your large fibers...and put these doctors in their place.
The skin biopsy should have also checked the morphology (condition) of the fibers as you can have a normal density, yet damaged fibers from autoimmune disease.
Hopefully you can get some answers and/or at least a doctor that will treat your symptoms with Neurontin or other medication to help with the pain, etc.
It is bad enough that I won't be able to work full time as a teacher this year, but no EMG to rule out a large fiber problem. Rheummy doesn't want to cross the neuro and it is disappointing for sure. Still trying to get referred to Seattle...insurance companies do rule the world it seems.
I was able to get an appointment in Seattle for a consult and because my insurance won't cover they will only charge me 25% of the usual charge. I am going on September 21st and hope for answers. Thinking of so many on this board who are so supportive that have kept me searching for answers in my quest to try and get better...it is amazing the support that is offered here!
Hello, you might want to try magnesium Chloride, there is an article in www.health-science-spirit.com/magnesiumchloride.html.It has really helped my neuropathies and really fast.
trc ..... I hope your appt. in Seattle is with a Neurologist.
If it was me, I would not add any meds, supplements, or treatments to your regimen before seeing another Neurologist. You do not want any new meds or treatments or supplements to alter your presentation. It is best if the new Neuro can see you and your symptoms as you are currently.
Hopefully the new Neurologist will do a thorough exam and do appropriate testing. Hopefully you will get some answers and appropriate treatment.
Quote from: trc1962 on August 15, 2016, 05:34:18 PM
I don't currently take b-6 just a b-complex liquid sublingually. I don't have a sjogren's diagnosis although the doctors call it "primary sjogrens" based off a positive eye test and a mildly positive lip biopsy, sicca symptoms and neuropathy that has come and gone with prednisone and aziathiaprine since 2003. I think I have a form if chronic inflammatory demyelinating polyneuropathy based on the symptoms I have that match up to another gal who also had to demand an EMG and IVIG has helped her for 4 years + 500 mg cellcept daily. I am seeking a referral to Seattle to hope to get some things done. Hope to have vitamin levels checked, check that I actually make intrinsic factor, help with thyroid issue and anything else they want to do. I have autonomic issues as well, hypersweating (like always), shut down bowel - like I have tried it all and can't go to the bathroom, my stomach doesn't empty and gets enormous, my eyes don't dilate right to the light correctly and I feel "head heavy" at times. This has been coming on for a year and somewhere there are answers. Now if my insurance will just get me approved. Happy Monday to all and hope everyone is doing okay with the Summer heat.
I don't understand why you think you don't have Sjogrens when doctors have said you do have primary Sjogrens? Primary Sjogrens is more severe than secondary SJS and is the most obvious cause of a small fibre neuropathy, other than advanced diabetes or alchoholism. The lip biopsy is the most definitive test for Sjogrens so if yours met the criteria then this is by far the most likely cause of your SFN. Certainly in the UK this counts as an extra glandular symptom of SjS disease and is taken seriously.
My punch biopsy last year showed normal, as did my autoantibodies and Schirmers test abd saliva production test. But now I know that Sjogrens is a very complex disease and since my positive lip biopsy result a month ago everything I've experienced health wise over the past six or seven years. and probably even stuff from decades ago, is made sense of now for me. The previous neuro did try and reverse his diagnosis of a clinically acknowledged SFN after the punch biopsy and nerve conduction tests showed nothing last year. But as the results of my lumbar puncture showed paired oligloconal bands and my inflammatory markers have always been high - sometimes very high - he shoved me back to rheumatology. i domt know if I'll qualify fir further immunesuppressants now or IViG or Rituximab. But I won't let any doctor fob me off again for sure!
Oh dear I am sorry you are in this predicament. I have had issues with absorption and found the only thing that has helped is taking 40 mg of Nexium daily. I've tried to cut back to 20 mg, it's not enough. Best wishes for finding some answers.
Most B-complexes will contain B6.
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
Anita I've been told and also read that the Sjogren's is usually more severe when it is the primary disease - although this is counterbalanced in that those with secondary Sjogren's have to cope with their primary disease so aren't any less affected overal. I was told this by a professor of connective tissue diseases who felt that my secondary Sjogren's would only ever be a nuisance - but wouldn't warrant non symptomatic treatments of itself. Only the RA symptoms and signs would be taken seriously as the primary disease.
Regarding myself I'm jumping the gun because I don't see the rheumatologist until next week. But my strong suspicion is that Sjogren's is my primary disease and the RA was a secondary manifestation of this. When I was diagnosed five years ago the rheumy said "I'm diagnosing you with seronegative RA for the time being - but things could change so let's keep an open mind". Now it could be that the DMARDs I was put straight on chased the RA off. But normally,after a few years off these drugs, the disease would have returned but it hasn't. Also I have no erosive damage yet despite five years having past - so to me this suggests the RA was a misdiagnoses and I actually had Sjogren's all along - because this can show itself as RA sometimes I believe. I hope this explains my thinking - although it could be wrong and I might have several diseases co-existing as you say. But my hunch is that I never had proper RA to begin with. We will see.
However I still can't understand how trc1962 can not have been diagnosed with Sjogren's if the doctors are calling it primary Sjogren's? So why is the neuro not prepared to accept this despite normal punch biopsy results? Surely they should be treating before nerve damage occurs not waiting until it is severe enough to show up in a punch biopsy? And if the lip biopsy showed even mildly positive then I would have thought this was pretty conclusive? Therefore treatment for Sjogren's related SFN should be forthcoming for this reason?
Quote from: anita on August 17, 2016, 07:02:03 PM
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."
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."
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.
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.
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.
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.
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
Quote from: MAT51 on August 18, 2016, 12:26:29 AM
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.
Quote from: anita on August 18, 2016, 06:28:42 PM
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
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.