Update – March 29, 2017

A few days ago I had an appointment with another neurologist, of whom I had waited 6 months time for.   He is the 4th neurologist I have seen thus far.   He told me there were a couple blood tests that haven’t been done, and so is having me take them. He also referred to do an autonomic nerve test in the beginning of April.   I think this is very important, so that I can understand better what is causing periods when I get dizzy.

I’m planning to go to the Mayo Clinic in a couple months time. And so, by the end of that trip, my diagnostic workup should be totally complete.   Either a treatable cause will be found for the SFN, or it won’t.

As for good news, my pain levels have been lower over the past week.   I also feel I have continued to learn the importance of distracting my nerves – the most painful periods tend to be right before I fall asleep / when I’m in a super relaxed state. The simple act of keeping a fan on or taking a warm shower really helps.    I’ve been using a medicinal herb that I have found to be extremely helpful, and it makes the nights a lot more bearable.

I’ve also been thinking, since the body has natural ways of creating its own “feel good” chemicals, I should focus heavily on that through each moment.   Focusing on activities that foster my sense of purpose, spiritual growth, empathy, humor, curiosity, appreciation, etc. all I think are helpful with this.   I plan to write more about this in the future.

14 thoughts on “Update – March 29, 2017”

    1. Hi Helio, thank you for the link, it is interesting information! I know my neurologist who originally suspected I had SFN, suggested I go on a gluten free diet. She said that for some patients, going gluten free causes the symptoms to go away.

      I adopted a gluten free diet at the end of last year, but I can’t say it’s had much of an impact on stopping the SFN. However, I do think going gluten free has helped in other ways. Nonetheless, when I go to the Mayo Clinic, I’ll be sure to bring a copy of this study to show the doctors there.

  1. Paul;

    Great to be gluten free, even if you do not have antibodies against gluten or the DQ2 / DQ8 genetic profile, I recommend you keep. Gluten triggers celiac disease an immeasurably recognizable autoimmune disease but also co-authors (or even causes) a number of other autoimmune and inflammatory diseases.

    First of all you should define whether it is directly sensitive to gluten. The most important is the genetic profile DQ2 / DQ8. Many individuals do not have anti-endomysial antibodies, either anti-gliadin or anti-transglutaminase reactive but have all the symptoms of celiac disease and have positive genetics. Aside from this an endoscopy with duodenum biospy should be done. Even being free for months gluten-free injuries can be found by delaying two years for the complete intestinal repair. Aside from inflammatory bowel changes and damage to intestinal flora is being increasingly correlated to various neurological (and would say psychiatric) diseases. A bowel is slow to repair.

    Speaking again of the gluten-free diet make sure there are no occasional contaminations as the immune system is activated for days by a small gluten exposure in sensitive subjects. Then in the USA was recently launched a gluten detector called “Nima”> https://nimasensor.com/

    Some suggestions:

    1. I also suggest that you research on low doses of naltrexone as an attenuator of autoimmune diseases. This link explains very well the concept> https://www.youtube.com/watch?v=rD4EK_L4oFM&t=107s

    2. Palmitoylethanolamide, a natural substance can help control pain. > https://palmitoylethanolamide4pain.com/about-2/ (sold in the US by Vitalitus> https://www.vitalitus.com/buy/)

    3. Use the powerful natural anti-inflammatory turmeric. (Buy the pharmaceutical form Meriva).

    4. The minimum maintenance of your vitamin D levels in the upper limit as it is the hormone strongly immunomodulatory.

    5. Be aware of the substance ARA 290> http://araimpharma.com/press/

    1. Hi Helio,

      Thank you very much for your kindness in taking the time to write out those suggestions. I will certainly inquire about the endoscopy with duodenum biospy when I’m at the Mayo Clinic.

      Have you ever read the book “Grain Brain” by David Perlmutter, MD? I think you may find it to be very interesting, he writes all about gluten and its potential neurological effects.

      I watched the youtube video you sent about naltrexone, it looks quite interesting. I was told by one of my neurologists that “idiopathic” SFN cases are likely a result of some kind of unknown immune-mediated disorder. And my Rheumatologist told me there are unknown autoimmune disorders as well. And so this type of treatment I think may be worth a try, given its risk profile. If my trip to Mayo doesn’t produce results, I’ll ask a local doctor about this.

      I also read up on Palmitoylethanolamide. I never heard of it till you mentioned it. I added a link to a study on it (along with links to the naltrexone and ARA 290 studies) @

      http://www.smallfiberneuropathy.org/links-to-treatment-studies-and-resources/

      for others who search for it. And I will continue to research these things further.

      Also, I just ordered a supply of Palmitoylethanolamide, and will likely give that a try at some point in the near future. I’ll let you know if it ends up working.

      I’ll also start taking a high quality turmeric. As for Vitamin D, I currently take 5,000 IU a day. I’ll get a Vitamin D test to see if that should be increased.

      My neurologist also recommended Alpha Lipoic Acid, and so I began taking that about a week or so ago. I currently take 600 mg, but he said that can be increased to 1200 mg. I think it takes several weeks before its supposed to have any effect.

      Is your treatment experimentation continuing to be helpful with reducing your pains? Do you think over the next couple years, it will be eliminated as you remove gluten from your diet while restoring your system? Also have you tried any of the more conventional medications (such as Gabapentin, Cymbalta, Lyrica, etc.)? I have shied away from those till this point, as I am very worried about the possible cognitive side effects.

      Thank you again for sharing your knowledge, and I hope that things continue to improve for you.

  2. Paul;

    I’ll post different posts commenting on each topic. I apologize if any of the excerpts are not clear, although I speak English, it is faster for me to write in Portuguese and translate with Google Translate.

    1. My SFN is defined as autoimmune disease associated with celiac disease. I have no doubt that the chronic intestinal aggression that I experienced for 50 years (I have only been two years without gluten) has caused this neuropathy, or caused it to happen.

    We have to keep in mind that the immune system that attacks the individual’s own tissues increases their attack when triggered by “triggers.” The recent book “The Autoimmune Fix: How to Stop the Hidden Autoimmune Damage That Keeps You Sick, Fat, and Tired Before It Turns Into Disease” details these triggers well. (I find the book long-winded, but the central ideas are well coherent and necessary as an alternative to a medicine that basically only offers corticosteroids (and its complications) for autoimmune diseases.

    Are they:

    1. Emotional stress – the immune system is mobilized when we are on psychological stress, and in the case of the autoimmune patient this “hits stronger” against the patient himself.

    2. Immunogenic foods – are foods that have by nature a power to activate and directly cause the formation of autoantibodies. This food does so because they consist of protein molecules of almost impossible digestion leaving protein fragments that cause the body to react particularly being absorbed in a gut with loss of the correct filter function, called “leaky gut syndrome.”
    The immunogenic foods in this case are gluten and casein (the milk protein).

    3. Food Allergens – allergy and autoimmunity are distinct dysfunctions of the immune system. But in autoimmune patients, foods that cause allergic (even subtle) symptoms can trigger autoimmune crisis. In my case it is clear that “casein” (dairy), peanuts and soy protein strongly activate SFN crises.

    4. The alteration of the intestinal flora (dysbiosis) is responsible for a series of inflammatory and autoimmune conditions. The use of probiotics is important. And recently the adoption of kefir (water) has brought me a remarkable improvement of my neuropathy.

    5. Heavy metals, (mainly mercury) and other toxins such as pesticides (glyphosate) may be the cause of autoimmune diseases. With our food increasingly modified and added to a lot unknown substances of nature, it is not surprising that autoimmune diseases are increasing vertiginously among the population.

    Recently I had a day of strong crisis where it became clear to me that a small piece of tofu (soy cheese) was the trigger.

  3. D VITAMIN
    As for vitamin D, as I said I undergo the protocol as high doses of vitamin D. As I said, it can not be done on its own. In my case this treatment certainly attenuated the aggressiveness of the pathology but did not stop it altogether. To better understand the “vitamin D protocol” read the book “Multiple Sclerosis and (lots of) Vitamin D: My Eight-Year Treatment with the Coimbra Protocol for Autoimmune Diseases” by Ana Claudia Domene. (https://www.amazon.com/Multiple-Sclerosis-lots-Vitamin-Eight-Year/dp/1519165315/ref=sr_1_sc_3?s=books&ie=UTF8&qid=1492046374&sr=1-3-spell&keywords=vitamin+d+treatament )
    This protocol was created to deal with the terrible disease “multiple sclerosis” where the immune system attacks the myelin sheath of the nerves. Subsequently the group that created the protocol began to use in other autoimmune pathologies. Our pathology, “small fiber neuropathy” is a cousin of the other terrible disease. Luckily, the antibodies attack only the endings without milelina or finally covered with myelin that capture temperature and tactile information.
    Keeping your vitamin D in the maximum level of safety, it helps, but if all else fails, look for this group in São Paulo.

    ALPHA LIPOIC ACID
    As for alpha-lipoic acid is a lovely theory, powerful anti-oxidant. It seems to help in the most common SFN that is diabetes, but I do not know how much help for us with autoimmune SFN diagnosis.
    The initial use of doses of 1,200mg is correct, yes. But I recommend it from a good pharmaceutical source and take it fasting for half an hour for food. Buy preferably an extended release presentation. I’ve been using it for over a year, but I can not tell you how this is helping me.

    LYRICA
    I do not recommend! I took it for almost a year. I gained many pounds (which I already lost) but fortunately I did not have cognitive disorder which is a common complaint. On a trip between New York and Miami I was without this medicine that I had calculated the number of pills wrong when packing in Brazil. I thought I was going to have a severe pain crisis, and NOTHING happened! These anticonvulsants serve to limit the “shooting pain” that occurs episodically along with burning, burning, and hyperalgesia. Not worth the cost-effective use.

    CYMBALTA
    This medication is an antidepressant that like others increases the central nervous system tone inhibiting the perception of the painful stimuli. Another option (which I use) is amitriptyline. IT’S OK TO USE! At this point, this type of medication is critical for you, not only for pain, but for anxiety and mood.

    PELMUTER
    Yes I know. I am a follower of him and I defend his ideas hard!

    A hug!

  4. Hi Helio,

    Thank you for all this great information. I’m sorry that you had a bad day, but it is good that you were able to isolate the tofu as the trigger. And so hopefully that information will help to further reduce bad days in the future.

    In Brazil, is it easy to find gluten free foods? Where I live in Seattle, it is becoming a lot more mainstream.

    Thank you for your summarization of “The Autoimmune Fix”.
    Do you keep a way of tracking your “triggers”?

    My responses:

    #1. Yes, I’ve noticed that emotional stress is definitely a trigger! And so I do my best to keep stress to a minimum, as well as practice relaxation / hypnosis techniques to help bring down stress levels when I feel the need. Also, taking periodic naps I think helps to “reset” my system and reduce feelings of stress.

    The only downside to this, is that paradoxically, I find when I’m in a deeply relaxed state, just before sleeping – I usually feel an uptick of nerve sensations. My theory on this is perhaps when one is going into a state of rest, the inhibitory neurons may enter a rest cycle too?

    #2. I’ve noticed that diet plays an important role for how I feel. Since this issue first started for me, I notice that I always crave vegetables, salads, etc. And if my diet is not good, I’m a lot more prone to flares.

    #3. I’ll pay a lot more attention to flares based on eating specific foods, to pinpoint any potential allergens. Also, do you know of any reliable food allergy tests?

    #4. Good idea, I’ll reincorporate probiotics as well as fermented foods.

    #5. Have you ever been tested for heavy metals?

    Anyway I hope you had a good and low-pain holiday weekend!

  5. Paul;

    In my country the “gluten-free” market is booming. But I do not care about this, because what you are looking for “gluten-free” are usually substitutions of carbohydrate-rich foods for another. I do low carbohydrate and high fat diet as standard (LCHF / Paleo).

    You live in Seattle! Where does my colleague Frasier live with his “psychiatry on the radio” program! Rsss (love this series).

    Looking at the reactions, he saw that in addition to milk and dairy products, peanuts and soy protein are actually triggers. I used for a while an app called “mySymptoms Food Diary” which is great for correlating with user-defined symptoms.

    When you are at rest and the neuropathy becomes more intense. This is common in SFN. It is due to the fact that the affected fribras lead pressure / stretch information of the dermis. When we are resting, it ceases the competitive stimuli (such as ground support and walking). With the reduction of external stimuli, these affected neurons send a kind of “echo” of previous sensations.

    On diet, I strongly advise to learn the principles of Paleodiet.

    I called the food-cat allergen. Allergic tests have evolved but still suffer criticism from many authors. The most traditional is injecting small allergies into the dermis. It gives a very false positive. Others that measure “in vitro” reactions also still fail. The best result is self-observation.

    From heavy mortars, I tested the aluminum and got it high in the body. I’ve been thinking of dosing mercury along with the next tests.

    A hug!

    1. Hi Helio,

      Thank you for the advice on the Paleo diet. This is something I will research more. You are right, I have found since going gluten free, I am still eating some carbohydrate-rich foods, and so perhaps it may be good to experiment reducing the high carb intake.

      Yes, Frasier is a good show! Back when I was diagnosed with “anxiety”, a friend of mine had advised me to watch an episode of the show “Cheers” every night before going to sleep, as its lighthearted humor. I don’t know if you ever watched this show, the character “Dr. Crane” eventually spun off into the show “Frasier”. Both are great shows, and I still watch them periodically when I want to have a laugh 🙂

      Also thank you for the information regarding “mySymptoms Food Diary”. I think soon I will make a page that has specific information for “tools”, for anyone who searches, and this can be added to that.

      Your explanation for why neuropathy becomes more intense at rest makes a lot of sense. I wonder if the theory of competitive stimuli is behind devices such as “Quell”, or TENS units, which some people say they get relief from?

      Yes, I’ve heard mixed reviews about allergy tests. Perhaps trial-and-error is the best way.

      If you have any excess toxic metals, I hope that you will be able to get it down to within normal ranges.

      On my end, last week I did an autonomic nerve test, which I am awaiting the results on. Once I get that, I’ll do another blog post.

      I hope on your end, that you are having a good, low-pain week 🙂

  6. Hi Paul,

    It was really nice to meet you yesterday. I appreciated your calm demeanor, willingness to hear and help others, and positive attitude. One of the most maddening things about having multiple chronic conditions like I do (fibro, RA, celiac, hypothyroidism, etc) is that with their overlapping symptoms which can each have a myriad of causes, it’s next to impossible to pinpoint what is triggering the symptoms and which condition they are attached to, and making it even more difficult to treat the symptoms! While the joint pain, fatigue, and intermittent stabbing nerve pain have been bad, I at least have hope that finding the right immunosuppressant drug or steroid injection or whatever will help eventually, but the persistent stinging, burning, tingling, sometimes electric pain from the neuropathy in my hands, arms, and feet is that much more unbearable because for one thing, the few pain medications I can take do NOTHING for this type of pain (I’m maxed out on Gabapentin which brings it down by 50% during the day but nights are bad, typing this right now is actually pretty hard) and secondly, the suggested diagnosis of small fiber neuropathy recently by my neurologist was so not helpful, mainly because it seems that unless there is a discernible underlying cause (such as my celiac, vitamin defiencies, anemia, or hypothyroidism, all of which I have been trying to treat for a decade without success except for the hypothyroidism, that’s new so there is still a tiny bit of hope), there is no cure, and this is just the way my hands and feet will feel forever. The only thing that has stopped me from completing losing my mind over the past 6 months as I have been rapidly declining pain, symptom, and mobility wise is trying to convince myself that it’s not forever, that I will someday have a better quality of life.
    But maybe I won’t.
    This is really hard for me to handle, so I’m sorry to go on for so long, but it was just so great to meet someone who is managing this condition and may have specific tips to share. I’d love to know what has been helpful for you, medication and supplement wise, in case there is something I haven’t tried yet. Thank you!

    Katie

    1. Also, my rapid decline, which began as shooting nerve pain and tendonitis in my right hand and wrist with no obvious injury, followed by neuropathy in that hand, followed by joint and nerve pain everywhere and neuropathy in my feet, happened about 3 months after having to have 2 abdominal surgeries in 3 months. I don’t remember the name of the antibiotics I was given, but had to have several long courses, both IV and then orally after being discharged. I wondered if the trauma of this experience somehow made my autoimmune symptoms and conditions worse, but who knows, I may have also experienced neurotoxicity. While I do take 300-600mg of Gabapentin currently, I am naturally wary of any new medication also, and couldn’t believe a former gastroenterologist prescribed Reglan, a prokinetic medication that has a black box warning from the FDA because it can cause tardive dyskensia (involuntary muscle twitches) which may not be reversible! Despite the fact that the drug reduced my stomach pain and nausea quite a bit, I stopped taking it immediately and have replaced it with bititter herbs with mixed results. Still so much better than even more neuro side effects!

    2. Hi Katie,

      Thank you for the message, it was very nice meeting you as well. Yes, I can imagine the frustration you must feel when dealing with multiple conditions. Particularly given how specialized medicine is, and the propensity to get the medical “run around” when there is ambiguity around what is causing what.

      Regarding the suggested diagnosis of small fiber neuropathy not being helpful – if there is a way to get the diagnosis confirmed, there may be benefits to this. I know on my end, prior to the nerve biopsy, it was very difficult getting doctors to believe my story. Countless times I was diagnosed as having “anxiety”. It got to the point, where I seriously thought I was losing my mind – because I was feeling all these painful sensations, yet was told it wasn’t real.

      Since getting the nerve biopsy, it’s the very first thing I present to the doctors. I’ve not had any doctor doubt me since having this evidence of my condition. And so, its making my medical journey go a lot smoother now…though I am still not sure if I will find a cure to this problem in the near future.

      Regarding telling yourself that you will one day have a better quality of life – I think that hope is vital. While science may at the moment be behind the curve with these issues, I think it’s likely that at some point in the future these conditions will be treatable and curable. I recently finished the audiobook “The Brain’s Way of Healing” which talked about some promising new treatments in the pipeline.

      And in the meantime, there are stories of people you will find online who were able to reverse these processes, or figure out ways to help better manage their conditions. The human body can be quite resilient to adapting to change…and the brain is constantly adopting and adjusting to its environment. And so there are things we can do to help make life with these conditions more bearable.

      One thing that I started doing, is trying to incorporate more positive messages around me on a daily basis. And so I limit my news intake, anything that causes stress, etc.

      Here is a video that you may find some inspiration from. It is from a woman who had been dying from end-stage cancer, and her condition ended up going into spontaneous remission, which she credits to a near-death experience she had:

      http://anitamoorjani.com/about-anita/

      I really like her story, as it shows how even in the most hopeless of situations, there are still endless possibilities and opportunities to learn / grow.

      I know how stressful it can be to worry about the future, and the various “what ifs” when dealing with a situation that seems to be getting worse over time. I know I have worried myself about what I will do if I end up losing mobility, etc. I think the only thing we can really do is to foster a sense of resilience, as well as to try to live with as much purpose as we can, with the energy that we have. I think as long as we are doing everything in our power to take care of ourselves, that is really all that we can ask of ourselves.

      Anyway I hope that is helpful.

      I’m planning to post an update at least once a month. Please feel free to reply with how you are doing, as I am looking forward to hearing about your progress. Also know that you are not alone in this struggle.

  7. Paul;

    First, sorry for some translation errors in the last post. I wrote late at night straight into Google Translate but forgot to look at some inconsistency. Where it is written “cat” is “trigger”. Where is “he saw” is “I have found”. OK…

    Good,

    1. For those who have small fiber neuropathy caused by “pre-diabetes” (altered glucose tolerance test) or severe hypertriglyceridemia a “low carb” diet is the cure of pathology itself. Unfortunately our case is not metabolic but immunological. But living low carb drives away diabetes, overweight, mental sluggishness, compulsive hunger and, as Dr. Pelmuter says, puts you at risk of dementia.

    2. Yes, Dr. Crane was born in an episode of Cheers. You reminded me, I did not watch Cheers, but I have the series here with me. I’ll watch!

    3. Taking the line of thought presented by “Paleo Mom” ​​(and other authors) the autoimmune disease goes hand in hand with the “leaky gut” condition. With the compromised filtering function of the intestine protein molecules can be “triggers”. For this, a time feeding the data of the app “MySimptoms” can be very useful.

    4. The TENS (and the PENS) in thesis would improve the nervous network compromised by losses of nervous units causing the pains and ardence. It would be something long term producing new connections. A peripheral neuromodulation. (Work in my clinic with central modulation with r-TMS). The result of TENS / PENS seems rather modest. Below, I leave an excerpt from an article written by a neurologist colleague here in Brazil on the subject.

    A good week without pain too!

    From the article by colleague Pedro Schestatsky from Porto Alegre:

    Transcutaneous Electrical Nerve Stimulation (TENS) We identified one randomized controlled trial assessing the role of TENS in neuropathic pain patients. Kumar and Marshall30 evaluated the efficacy and safety of this therapeutic modality in 31 patients with neuropathic pain and type 2 diabetes. They were randomized to receive either active or sham electrotherapy for a daily 30 minutes session in each limb during one month. They found symptomatic improvement of 15 of the 18 patients in arm treatment group and only 3 of 13 patients in the placebo group (p, 0.01). Although they have been found to be of interest, they should be looked at with caution because of the open-label design of the study.

    Percutaneous Electrical Nerve Stimulation (PENS) Two studies were identified based on the similar methodology and design to approach the effect of PENS treatment for neuropathic pain. In the study of Hamza et al.31, a total of 50 patients with type 2 diabetes and peripheral neuropathic pain of .6 months duration involving the lower extremities were randomly assigned to receive active PENS (needles with electrical stimulation at an alternating frequency of 15 And 30 Hz) and sham (needles only) for 3 weeks. Each series of treatment was administered three times a week for 30 min. After a 1-week washout period, all patients were subsequently switched to the other modality. At the end of the study patients treated with active PENS reduced their pain from 6.2 ± 1.0 to 2.5 ± 0.8, whereas patients treated with placebo remained unchanged in their pain scores. However, one big limitation of this study, according to own authors was the difficulty of blinding that might have caused false-positive findings in favor of active treatment. Raphael at al.32 performed a randomized double-blind sham-controlled crossover trial on 31 patients with chronic pain with surface hyperalgesia to investigate the short-term efficacy of PENS. For the active PENS group, pain scores 884 Arq Neuropsiquiatr 2014; 72 (11): 881-888 changed from 7.5 (range 6-10) before therapy to 0.5 (range 0-8.5) after therapy.

Leave a Reply

Your email address will not be published. Required fields are marked *