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Elevated B6 and PN Symptoms
MrsD recommended I start a new thread related to my symptoms and testing. This is the starter I posted in a B6 / P-5-P Informational Thread:
__________________________________________________ _______________ MrsD, Thank you so much for your commitment to this multi-year thread. I feel more educated regarding B6 (active vs inactive), plasma and intracellular testing, etc. I truly appreciate your thoughtful replies and posts linking research to help answer questions members have. I hope to provide a comprehensive story (and future follow-up) that can be helpful to others. I apologize for the lengthy post... just looking for a few answers and hoping to help others. I apologize if it appears I'm "hijacking the thread." I can always delete and move to a different forum. Here it goes!... Personal Background: 31 year old male 6'0" ~135-140lbs Northern European Caucasian decent Grew up in Chicago (1982-1998). Lived in Florida since. BS Engineering 2004 MS Business 2005 Work at NASA / KSC since 2006 Excellent Health History except for Migraine History (lately with aura) Type A Personality High Stress / High Anxiety Diabetes, Cancer, and Cardiovascular Diseases do run in the family Mother is Celiac Minimal neurological family history Divorce 2007 Remarried 2009 Expecting first child May 2014 Health Complications / Neuropathy Genesis: - Sold first home Dec 2012 - Attempted to buy second home Jan-Jun 2013 - Very stressful time *** Diagnosed with Central Serous Retinothapy (CSR) in left eye June 2013 (fluid discharge behind retina)... completely healed ~ 6 months later. Linked to Type A high stress / high anxiety. I really scared myself during the process. I literally convinced myself before seeing a doctor that I had macular degeneration, was going blind, etc. This symptom has recurred right after a stressful event (recurred in left eye after finding out wife is pregnant - good news... haha. Recurred in left eye while moving this past October. Formed in right eye starting Dec 2nd 2013... see below). - Started taking vitamin supplements and increased exercise vigor almost daily as recommended to reduce stress: acquired gym membership to weight train, ran 3-4 miles approx 3-4 times / week. - Vitamin supplements were as follows: - Isagenix Ionix Compound (basically a multi-B) B1 - 3mg (200%), B2 - 4mg (235%) Niacin 13mg (65%), B6 6mg (300%), B12 - 120mcg (2000%). - Isagenix IsaLean Pro (basically a protein compound loaded with vitamins, including B6) - Isagenix Greens (basically a digestive enzyme compound) - I felt EXCELLENT taking these products for about 2 months. *** Aug 2013 - Developed chest tightness. "Dealt" with it for a week or so until I started developing numbness in my right ring and pinky fingers. I initially thought ulnar nerve entrapment from weight training. Saw an orthopedic doctor who did not find any nerve entrapment and felt my symptoms were just transient and on their way out. I followed up with my GP to discuss the chest pain. I was diagnosed with costochondritis (rib cartilage inflammation). I took an anti-inflammatory for a few weeks and haven't had the problem since. To rule out heart problems, my GP also ran an EKG on me. I spit out an abnormal EKG (possible early repolarization). Said it was common in athletes. I still followed up with a cardiologist. After kicking the snot out of a stress test and getting near perfect imaging on an echocardiogram, I was told they don't want to see me for a heart related issue for 30 years! *** Sep 2013 - Left leg developed some numbness and tingling for ~ 1 week *** Oct 2013 - Right finger neuropathy "spread" to right thumb and index finger - I thought I needed more vitamins (they're good for you right!?) - Organic multi-vitamin - Ginko Biloba - Biotin - Multi-B - Omega 3,6,9 - Chelated Magnesium (200-400mg) - I was taking all this with the Isagenix supplements. At it's peak, I was taking roughly 12-13mg B6 / day. I know that is much less than values quoted for toxicity (see blood results below). *** Nov 2013 - Starting getting neuropathy in left hand and right food. *** Dec 2, 2013 - Woke up with twitching in calves. I believe stress threw me into a wave of other symptoms as my internet research was pointing at MS... I started to stutter for a few days, was forgetful. I made an appointment with a neurologist, but couldn't be seen for a week or so. Between Dec 2-9th I started developing some wicked fatigue, leg weakness, minor hip gait, upper back burning, increased urination frequency. I was convinced I had MS and my "first exacerbation." *** First visit with Neurologist Dec 9th - Discussed symptoms and all supplements. Scheduled me for bloodwork and MRI. Suspected my B6 was toxic based on all the supplements I presented. She recommended I stop all supplements. My neurological test was fine (my balance was good, no numbness, etc). *** Bloodwork results updated below- All minerals, vitamins (including D and B12), cholesterol, sugar were "excellent." My B6 was 82 with 7-22 quoted as "normal." I see many posts regarding the misinterpretation of this and what "normal" is defined as. I plan to pursue some intracellular bloodwork. I will acquire copies of the blood work and post actual values. *** MRI results updated below- found two small white matter lesions. Believed to be migraine history related. Dr. wasn't concerned with size or location and doesn't believe I have MS. - I significantly changed my diet to almost vegan. I did a massive amount of research regarding MS dieting while I was waiting for test results. Paleo, Swank, McDougall, etc. I've felt generally in better health since switching my diet. I have gluten food sensitivities. Just trying to avoid inflammation. - I workout lightly 2-3 times / week - Since I switched my diet to vegan and thought I had MS, I have starting taking the following supplements: - B12 - 500mcg once / day - D3 - 5,000IU once / day - Omega 3 (don't recall intake amount) - Magnesium - 400mg (75% absorption) - Dandelion - mild effort to start a "cleanse" - I am no longer taking any B supplements or Isagenix products - My neurologist was OK with me taking these supplements and changing my diet. Current status 1/4/2014 Symptoms include: 1) Small muscle twitches in random locations at random times of the day. I'll wake up with nothing, then I'll move a bit and my calves will twitch a few times. My right ear was twitching this morning. It will be in my back, in my stomach, in my arms, my glutes, my feet. Nothing so bad as to hinder movement, walking ability, picking things up, etc. Someone that isn't as sensitive to their body as I am may not even notice them or pay attention. It's just annoying and kind of scary because it's unpredictable... and I've always had perfect control over my body. As a sit here and type I can just feel a few "bubbles" in my legs and right temple area. 2) I just feel a little tight / weak in the legs after walking a lot. 3) My balance is off a bit, but I believe I'm fighting a dry sinus infection. MRI showed a deviated septum and my eyes have been dry. I'm tender around my nose and eyes. 4) My hands feel like I'm wearing thin gloves, and sometimes they will ache or I'll get a shooting pain that lasts a few seconds. My hands generally feel better the more I do something or the further I get into my day. 5) I notice that after I workout, the twitches are a little more severe and they aren't spaced out in time as much. But, they do decrease after a few hours. 6) I do feel some slight buzzing / tingling in my legs at random times. 7) Overall just kind of irritated / uncomfortable from the hand issues and twitches spreading in different locations. 8) I will note that I literally had no twitches from 12/26-12/31 after being on a diet very strictly for ~ 2 weeks... then all of a sudden they came back after I loaded up with food on New Years Eve. I ate swordfish, grilled chicken, hot dogs, corn chips... things loaded with B6... (so much for my diet plan). But, I'm back on it. I think this may be a key as to how my body processes B6...? Food on my grocery list currently include: (egg whites, apples, pears, tangerines, asparagus, celery, cucumber, carrots, yellow and orange sweet peppers, shrimp). I know this isn't a "balanced" diet. I'm just trying to avoid B6 as much as possible and see how I do. Not sure if this is a correct approach. 9) No / minimal fatigue 10) Clear thought process 11) No stuttering Near Term Plans: 1) I'm really tired of the guessing games and diagnosing myself. I plan to see a nutritionist soon and follow-up with my neurologist in late February. 2) I'm fully intent on following a strict diet (no gluten, vegetables, healthier low fat proteins, etc) 3) I plan on starting a massage protocol 4) I plan to continue working out lightly 5) I'm doing some light meditation / yoga 6) Pursue additional lower level / intracellular blood tests Questions: 1) Do you believe my ~vegan diet and B12, D3 supplemental approach is ok? 2) Should I be supplementing with P5P? 3) Do you believe the change in my muscle verticulations after eating high B6 foods for a day or so is indicative of a pyridoxal kinase process deficiency? I saw your links to the autistic studies. I've never had a problem or reaction like this before. 4) Does this all sound like something more severe than just a B6 issue? Again... thanks graciously for your time. __________________________________________________ ______________ Here are my full bloodtest results (reference range in parenthesis): GLUCOSE: 92 (65-99 mg/dL) UREA NITROGEN (BUN): 9 (7-25 mg/dL) CREATININE: 1.05 (0.60-1.35 mg/dL) eGFR NON-AFR. AMERICAN: 94 (> OR = 60mL/min/1.73m2) eGFR AFRICAN AMERICAN: 109 (> OR = 60mL/min/1.73m2) BUN/CREATININE RATIO: N/A SODIUM: 138 (135-146 mmol/L) POTASSIUM: 4.3 (3.5-5.3 mmol/L) CHLORIDE: 98 (98-110 mmol/L) CARBON DIOXIDE: 29 (19-30 mmol/L) CALCIUM: 10.1 (8.6-10.3 mg/dL) PROTEIN, TOTAL: 7.6 (6.1-8.1 g/dL) ALBUMIN: 5.2 (3.6-5.1 g/dL) GLOBULIN: 2.4 (1.9-3.7 g/dL (calc)) ALBUMIN / GLOBULIN RATIO: 2.2 (1.0-2.5 (calc)) BILIRUBIN, TOTAL: 1.0 (0.2-1.2 mg/dL) ALKALINE PHOSPHATASE: 68 (40-155 U/L) AST: 17 (10-40 U/L) ALT: 17 (9-46 U/L) HEMOGLOBIN ALC: 4.9 (<5.7% of total HGB) TSH: 1.03 (0.40-4.50 mIU/L) ZINC: 79 (60-130 mcg/dL) T4, TOTAL (THYROXINE): 8.4 (4.8-10.4 mcg/dL) VITAMIN B6: 80.8H (2.1-21.7 ng/mL) WESTERGREN: 1 (< OR = 15 mm/h) WHITE BLOOD CELL COUNT: 5.9 (3.8-10.8 Thousand/uL) RED BLOOD CELL COUNT: 5.02 (4.20-5.80 Million/uL) HEMOGLOBIN: 16.3 (13.2-17.1 g/dL) HEMATOCRIT: 47.7 (38.5-50.0%) MCV: 94.9 (80.0-100.0 fL) MCH: 32.4 (27.0-33.0 pg) MCHC: 34.1 (32.0-36.0 g/dL) RDW: 12.5 (11.0-15.0 %) PLATELET COUNT: 188 (140-400 Thousand/uL) ABSOLUTE NEUTROPHILS: 4047 (1500-7800 cells/uL) ABSOLUTE LYMPHOCYTES: 1469 (850-3900 cells/uL) ABSOLUTE MONOCYTES: 325 (200-950 cells/uL) ABSOLUTE EOSINOPHILS: 30 (15-500 cells/uL) ABSOLUTE BASOPHILS: 30 (0-200 cells/uL) NEUTROPHILS: 68.6 (%) LYMPHOCYTES: 24.9 (%) MONOCYTES: 5.5 (%) EOSINOPHILS: 0.5 (%) BASOPHILS: 0.5 (%) IRON, TOTAL: 60 (45-170 mcg/dL) VITAMIN B12: 834 (200-100 pg/mL) FOLATE, SERUM: > 24.0 (Normal > 5.4) ANA SCREEN, IFA: NEGATIVE VITAMIN D, 25-OH, TOTAL: 35 (30-100 ng/mL) VITAMIN D, 25-OH, D2: <4 Here is the MRI Summary: BRAIN w/o CONTRACT: "MRI of the brain was performed with a 1.5 Siemes Symphony magnet with the following pulse sequences: Sagittal T1, axial T1, axial TSE FLAIR, axial TSE T2, axial GRE Medic, axial diffusion with ADC and coronal TSE T2 sequences were obtained. The ventricular system is not dilated. The cortical sulci are symmetrical. There are only one or two bright foci on FLAIR sequences in the subcortical white matter on the left. Periventricular signal is normal. Diffusion images are normal. HEMO scan is unremarkable. There are no intracererbral, epidural or subdural hematomas. Normal vascular signal void is seen at the skull base. The sella turcica is unremarkable. The pituitary is not enlarged. Pituitary stalk is midline. The visualized paranasal sinuses are clear. There is a large concha bullosa on the right with deviation of the nasal septum to the left. IMPRESSION: Unremarkable noncontrast MRI of the brain. There are only one or two punctate bright foci on FLAIR sequences in the subcortical white matter on the left, which is nonspecific. The periventricular regions are unremarkable. Large right concha bullosa with nasal septum deviated to the left. Visualized paranasal sinuses are clear. Answers to some questions from MrsD: May I ask what is the brand and type of Magnesium you are using?Is it Oxide? - I am taking Solaray's Magnesium Asporotate (200mg) per pill once a day. I don't know if it is Oxide or what. The health store nutritionist recommended it because he said it had 75% absorption. I was previously taking a Chelated Magnesium which was 50% absorption (aparently). Did you have an A1C done on your blood? Fasting glucose? - Doesn't look like my A1C was measured. My glucose was 92 from this test, but I wasn't fasting. As best I can recall, all I really had the previous 24 hours was a homemade organic juice (carrots, cucumbers, apples, celery, tomatos), probably a banana, a pear, mixed green salad. Didn't have much of an appetite. I was fasting from a blood test taken 12/27/2011 and my glucose level was 82. Not sure if that helps... - I bought the Morton Epsom Salt lotion on Saturday and applied it to my calves as soon as I got into the car. I felt like I had an improvement, but not sure if it was a placebo type effect. I applied it to my hamstrings when I got home and then went to rest on the couch, but still felt some "muscle bubbles." I will be more adamant of applying it daily maybe after I get out of the shower to see how I do. Do you take acid blocking drugs? statins for cholesterol? Did you have thyroid tests? - I'm prescribed both Alprozolam (Xanax) 0.5mg, and Clonazepam (0.5mg) to use "as needed" for stress / anxiety. I haven't taken a Xanax in a month, and have yet to take a Clonazepam. I'm avoiding all medication now as much as possible. These were both prescribed on an as needed basis. A 30 count fill of Xanax was given to me 6/25/13, and I still have 9 left. I was also given Meloxicam 15mg (anti-inflammatory) and haven't used any since I had the costochondritis issue back in September / October. - I don't take any cholesterol medication. Both my HDL and LDL cholesterol were in range for some blood work I had done ~6-8 months ago. Sorry don't have a hard copy! - My nuerologist told me, "my thyroid looked good" based on the bloodwork done... see TSH and T4 results on bloodwork. __________________________________________________ ____________ On the surface (to me). It appears I may have a b6 metabolism/conversion issue... I'm hoping increased exercise, water intake, and magnesium will help flush some excess b6 out. Perhaps P-5-P would help. FWIW, my legs were pretty tight and crampy 1/4-1/5. I did not take any supplements 1/4 or 1/5 as I was out of town and forget them (500mcg B12, 5000IU D3, Omega 3, 200mg Magnesium Asporotate, Dandelion). I also had a few slices of Board Head oven roasted turkey both days (I'm so hungry all the time with my ridiculous diet and figured I'd give it a shot). I did get on an exercise bike when I got home last night. I took my supplements this morning. Last night and today has been better. Reduced muscle twitches and my legs aren't as tight. This, some minor hand neuropathy, and lightheadness are really the only persistent symptoms as of late. No fatigue. I feel like I could go running right now and do well. Again, thanks for any additional insight and Happy New Year. |
Thanks for all this effort....to provide the information here.
I know it is tough to do. I am concerned about the magnesium you use. 1) it contains aspartate, which is a stimulant to the NMDA receptor which is a pain receptor. Aspartate is also in Nutrasweet which is a known headache trigger. 2) The 3 chelates in that product are heavy...so you are not getting much magnesium total in there. You can try increasing to 3 a day and when those are gone...switch to SlowMag twice a day. But once you use that lotion everyday, oral is less important because the mag is absorbed from it. Your MCV is just about over the upper level... this means your red cells are larger than normal. This happens when B12 is not working or unavailable. I suspect you are not methylating (activating) it... the serum test measures all cobalamin. You also are taking a supplement, and I don't think it is methyl version. The oral methylcobalamin is now easily and inexpensively available and it it best if you switch to that. You might have the MTHFR mutation, which blocks conversion of folic acid and cobalamin to the methyl forms. Your TSH is rather low....and most people who have thyroid hyperactivity are in the low end when tested. Once it goes below about .5 then doctors start to get concerned. But you are close to that level now. So I would only use methyl forms of folic acid --Metafolin, and also methylcobalamin instead of cyano form. I think you need a homocysteine test...because of that eye issue. I would use the mag lotion every day. Choose one area that twitches alot and apply it there....see if it prevents twitching to that area. Say a left or right calf. This is sort of a test. Twitching only in the morning may represent low blood sugar, especially if it goes away after you eat. There is nothing else really major in your tests. But they don't test everything or represent everything. |
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Thank you for researching the magnesium I am taking. I plan to just apply the lotion and purchase the SlowMag and determine the proper balance and intake of the two. I will double check the B12 supplement I bought and make sure I'm taking a methylcobalamin form. Interesting notes on my MCV and TSH: On 12/27/2011 my MCV was 92.2. Now it is 94.9... going wrong way. On 12/27/2011 my TSH was 1.63. Now is is 1.03... going wrong way. FYI I just finished making an appointment with a well reknowned Dr / Nutrionist for the 15th. They can do bloodwork during the appointment and will discuss intracellular testing to look at my B6 / B12 processing. |
That will be interesting. Stop your vitamins for a few days before you have work done. At least 5 days to a week should suffice.
See if you can get that MTHFR DNA test run....you might find some answers there. |
And--
--as we talked about on the Vitamin/Mineral/Supplement thread, if you think you are gluten sensitive and do have a first degree celiac relative, you do need to get tested for celiac, which might well explain a lot of the symptoms and malabsoprtion.
The starting tests for this are assays for: anti-gliadin IgG (the most sensitive test but least specific) anti-gliadin IgA anti-transglutaminase IgA (the most specific for frank celiac and most correlated with intestinal villious atrophy) total IgA (if one has a hereditary underproduction of this antibody it tends to skew the other results in a negative direction). There are also now somewhat more sensitive tests for deamidated anti-gliadin igA and IgG but these are not available everywhere, and there is some question as to just how much more sensitive they are. |
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I had my 4 hour health screening yesterday. It was rather interesting and covered: 1) General vitals and symptom review with a nurse ~ 30 minutes 2) Thorough symptom review and exam with doctor ~ 60 minutes 3) Computerized Electo Dermal Stress Analysis (CEDSA) with doctor ~ 30 minutes 4) Emotox Low Level Laser Induction Therapy with doctor ~ 10 minutes 4) Chiropractic Overview and Spinal Decompression with another doctor ~ 30 minutes 5) Blood draw for ALCAT / food allergy screening ~ 10 minutes 5) Initial Recommendations Review ~ 15 minutes 6) Checkout ~ 15 minutes Overall, the main doctor I saw believed that all of my symptoms were very minor and not serious. He wouldn't even go as far to classify my tingling / numbness / pain as neuropathy since it has generally improved the last several weeks and is so transient. He suspected the majority of my symptoms are stress induced, exacerbated further by doing "what-if" and "worst-case" scenario conclusions thanks to the lovely internet, and even further exacerbating things by food allergies. He suspected my adrenal glands were toast, that my magnesium was deficient, and that my total B vitamin make-up was off. He felt my recent bloodwork looked really good, except the high B6, but that really didn't concern him much. However, we did do an additional blood draw. He first wants to see what food allergies I have. He had no concerns with my MRI results. The CEDSA and low level laser induction therapy was completely new to me and really interesting. The CESDA revealed that my adrenal glands were toast, that I do not respond well to bread or sugar, and interestingly enough... that I do not respond well to magnesium, even though I need it. This machine could actually use the frequencies emitted by supplements and see how my body responds without me taking the supplements??? I'm not familiar with accupuncture or the technology... but it just blew my mind that this device could do this. Then the laser therapy sends the frequency signature of the allergens I'm being treated for into specific acupuncture points on the ear and body. This laser stimulates the meridians that correspond to the major organ systems and forms a positive association with the allergen. To me (as a left brain dominant engineer) this all seemed strange, but clients swear by it and I trust this doctor who took such an inordinate amount of time with me. Recommendations: 1) Follow an anti-inflammatory diet 2) Determine which allergens are revieled via my blood work 3) Take the following supplements: A) Adrenal Support. One capsul after breakfast and one after lunch. Serving Size is 2 capsules and contains (120mg Siberian Rhodiola Root Extract, 50mg Holy Basil Leaf Extract, 350mg Proprietary including Ashwagandha root, Holy Basil Leaf, Wild Oats, Schisandra Berry) B) Chelated Magnesium. He said I'm ok to finish up the Magnesium I have now but would like me to switch. He said at least 400mg / day. C) This stuff called Cellgevity which fights celuar inflammation, toxins, and free radicals. Two capsuls daily. Serving size is 2 capsules and contains (42.5mg Vit C as Calcium Ascorbate, 12.5mcg Selenium as Selenomethionine, 125mg RiboCeine as D-Ribose-L-Cysteine, 580mg Proprietary including Cordyceps, Curcmin, Resveratrol, Alpha Lipoic Acid, Grape Seed Extract, Quercetin, Milk Thistle Extract, Broccoli Seed Extract, Aloe Extract, BioPerine) D) This stuff called Cerenity which fights anxiety. Three capsules twice daily. Serving Size is 3 capsules and contains (50mg Vit C as Ascorbic Acid, 10mg Niacin as Niacinamide, 10mg B6 as P-5-P, 400mcg Folate as Quatrefolic-5-MethyItetrahydroflic acid glucosamine salt, 200mcg B12 as Methylcobalamin, 75mg Magnesium as DiMagnesium Malate, 5mg Zinc as Bisglycinate Chelate, 1000mg Inositol NF, 300mg Taurine, 100mg L-Theanine, 100mg PharmaGABA, 75mg 5-HTP) I didn't have time to read all the ingredients before agreeing to take the supplements. When I got home and saw "B6 - 10mg" I literally dropped a brick. But, then I saw it was as P-5-P, so I'm assuming this is ok. I'm going to ask the clinic before taking though. My body responded very well to all of these via the CEDSA analysis... 4) Cognitive Behavioral Therapy - I totally agree 5) Neuroscience Adrenal test if I don't improve |
http://www.quackwatch.org/01Quackery...s/electro.html
I have heard of this machine.... basically it has little validity IMO. While I do not really "love" quackwatch....it summarizes what would take hours searching the net. I am going to give you a long long link....and there is a part 2 also, where this poster from our MS board...finally saw "the light". After spending thousands of dollars over many weeks. http://neurotalk.psychcentral.com/thread172075.html This is only the part 1 of her journey. She found this person thru a Veterinarian, who was diagnosing and treating her cat...who BTW was also a fraud (and her cat relapsed seriously). (discovered later). Her last post that I have seen: http://neurotalk.psychcentral.com/post910775-44.html I have serious misgivings about your visit to that person...This was a Chiro? Do you have credentials as to where they were certified in this technique? Since you are an engineer, I can understand you would find this type of "treatment" interesting, intriguing. But really it has no basis in scientific fact that I could find anywhere, when I searched for this other poster months ago. And you are not nearly as ill as the poster I linked for you to read....not by a long shot. The ingredients in your Cellgevity are minute as far as nutrients go. One orange would provide the Vit C alone. Of course, these types of "proprietary" products are designed with low doses of everything, so as not to be toxic in any way. They are relying on the placebo effect for any benefit. And people do vary in placebo responses. Some are BIG reactors in fact. There are the methylated folate and B12, but I bet you are paying a large price for them in that product....???? I think it would be much better to see an integrative MD...who knows both medicine AND alternative things that work too. That is much different from what you have done with this new Chiro. |
I just wanted to add my opinion about a low TSH.
A low TSH is actually good if you are on medication such as NDT forms. There is much controversy about thyroid such as the likes of guide lines for B12, cholestrol and other topics. Do research before trusting one opinion on thyroid and what "normal" is. Normal is very difficult when it comes to thyroid since everyone is different. Most people find, when on medication, they feel best with a LOW TSH and a high end of the normal range for T3 free. My TSH started at a 13 (very high) and is down to a 2 and I am due to get blood tests right now and am hoping for an even lower TSH. Most people at the forum I go to have a TSH of 0.5 to a 1 and if the T3 free is in the correct range feel great. It has something to do with TSH being more supressed when on NDT medications. However, as MrsD said, a low TSH can be an indicator of hyperthyroid but you have to look at many other indicators. If my current dr suggests to me that my TSH is too low, with the knowledge I have learned, I will not continue with him if he chooses to reduce my medication. I would not consider your tsh low until you know what your T3 free is. |
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The clinic I went to is owned and run by a doctor that is board certified in Family Practice and specializes in Anti-Aging Medicine. He is a New York Times best selling author, has written over 40 books, has been on The Dr. Oz Show, Fox News, ABC World News, The Atlanta Journal Constitution, BBC, Readers Digest, News Week, Prevention Magazine. He is the doctor I spent nearly 2 hours with one on one. Several other doctors, nutritionist, physical therapists, nurses are on staff. The chiropractic doctor was just part of the total visit and designed for a stress release while the primary doctor reviewed my CEDSA results. The visit is designed to be fully integrative... symptom review, lifestyle review, bloodwork review, stress level review, diet review, supplement review, recommendations. If you so desire you can incorporate a massage, heat therapy, etc. I had to fill out nearly 30 pages of paperwork covering everything from what toothpaste I use to what direction my head faces when I sleep to what material clothing I wear to how often I wear a watch to what cleaning products I use. Forgive me for making it appear as if I just went to a chiro ;-) I would like to research the CEDSA analysis further. Some of the results came back completely intuitive. It showed I react poorly to wheat and sugar. They tried it on my wife and she was fine. This is confirmed through our everyday eating responses. It showed my adrenal glands were completely depleted, and that makes most sense based on my ridiculous stress and anxiety levels. But, I understand your perspective (which is really same as mine) and I need to have a scientific backing! I haven't read the links you provided. That is my next step. Yes, the supplements are expensive. ~$200 for the 3 bottles I was given. No obligation to buy, they offer you the opportunity to research alternatives. That's part of the reason I got them... so I could review ingredients lists and see what is out there and comparable. Some of the herbs are familiar from my limited research. So, I think I would like to give them a shot. But, I hesitate. I've been on a supplement bandwagon and I don't want to be spending $200 on these 3 supplements alone per month. I would really like to just find a solution in my everday food and add some herbs if possible. Thanks kindly for your input. It's very valuable. Overall I'm finding small improvements just with time... eating healthy, exercising, breathing exercises, meditating, sleeping better. I will continue to update! |
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All this blood work! :-) I will say that my "hyperthyroid-like" symptoms such as being jittery, heart palpitations, elevated heart rate, etc have literally all subsided. The ONLY thing I feel right now are small muscle fasciculations in my calves. They come and go throughout the day. They don't wake me up and I couldn't even demonstrate them for the doctor I saw Wednesday. They were literally non-existent that day. I have no muscle weakness from it. No fatigue. My reflexes are all fine. I just feel it's chemical due to it being so transient or maybe I have benign fasciculation syndrom? I'm starting to get just fed up with all the possibilities and scenarios. That alone stresses me out, and the doctor I saw hammered me about this. I'm determined to find a name, cause, reason, prevention, but you throw muscle fasciculations into google and you've got MS or ALS, need ot go on disability, quit your job, buy mobility devices. He's like, "Son... deep breathes... you don't have anything serious... stop with the internet and your research!" |
Do you notice the fasics more when you are hungry? That would be a clue to blood sugar changes.
Did you get the magnesium lotion yet? Morton Epsom Lotion? Rub it on the area that twitches and your fasics may be gone! Magnesium in supplements can only get to areas with good blood flow and if there is a constriction of any type in blood flow (say too tight of socks--which my son had), then the oral magnesium does not get to where it is most needed. This includes the feet too. This is why the magnesium lotion is so nice. You don't use much...just a little dab and bingo.. most problems fixed easily and cheaply and correctly. |
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I found part 2. Most of what I gathered from part 1 and part 2 is that she felt she was making progress... 3 steps forward, one step back. She is less heat intolerant. Reduced migraines. Improved digestion. Reduced skin flushing. Overall feeling better. She has spent a ton of $, but she says she would do it again in her last post. Is all that a placebo effect? |
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I did buy the magnesium lotion! I was told to avoid all supplements for 48 hours after my doctor visit. So I will be starting the lotion again tomorrow. Interesting note about blood flow... I always wear two pairs of knee high socks. Just something about wearing dress shoes and needing additional padding. But, I do get the fasics in my quads, hamstrings, glutes too... |
If you are not on any thyroid meds at all then a low TSH can by hyperthyroid. A low number while on meds is not. Also make sure it says FREE T3 and not just T3.
It may not be your problem at all but it's info about thyroid that I found invaluable in a time when doctors blindly go by outdated info and TSH only. |
Here is a nerve diagram of the legs, showing the distribution of the nerves. If your socks leave a dent in your tissues, when you take them off....they could be squeezing or irritating your nerves too. And over time you can irritate your superficial veins too.
http://www.innerbody.com/anatomy/nervous/leg-foot My son had a terrible time with plain old tube socks. I had him get the new oversized ones...and his foot issues stopped. |
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I have been applying the Epsom Magnesium Lotion daily on my legs. I'm also back on my magnesium supplements (still taking the asporotate until it's gone - 3 x's per day @ 200mg). I stopped the magnesium intake for a week as I had blood drawn for food allergies (no results yet). The fasciculations are reduced, but not gone. They are still primarily in the calves when sitting or resting. Every now and then I'll still get one in my glutes, knee cap area, while standing. Really anywhere. I added 5000mcg of methy b-12 once / day. I took my first around 3 pm by letting half dissolve under my tongue then I just chewed the rest. Tonight my right hand (pinky, ring, and tips of middle, index, and thumb) is pretty numb and achy. Translates up my forearm a bit... underside near Guyon's canal. Front of my left shin is also a bit numb tonight. Came out of the blue. I doubt that could be from the b-12 addition. That's the only thing I changed today. I'm going to read up on the "stickied" b-12 thread. Another addition to the symptom list is that I feel my neck has pressure around the thyroid area from about 9am-4pm. I believe this may be related to my cortisol level output and thyroid activity? Again I'm guessing. Feels fine now (writing at ~830pm). Feels fine when I first wake up. But it just comes with anxiety through my work day. I'm getting a full blood panel this Monday to look at TSH, free T3, free T4, B6, B12, iodine, zinc, copper, magnesium. I'm also going to do a saliva test to see how my hormones fluctuate throughout the day. Honestly... the only thing that is stressing me out are my symptoms. lol. Other than this menagerie, life is spectacular! |
Don't take vitamins for about 5 days before any blood work for measurement of them.
You will get results with artificially elevated numbers. B6 is held in the body in the muscles for a while. It might be best to avoid it for a week or more. The MMA test is also helpful for B12.... to show if B12 in your food etc is actually working. A low result is good, elevations demonstrate B12 failure somewhere in its cycle. (absorption, transport, activation). There is also a new test, transcobalamin which is not available everywhere, that will show if you have transport problems. |
Another update... my wife and I just returned from a trip to Guatemala. I have been on a very strict diet. Unfortunately the food I ate during the trip has caused my digestion to go on defcon alert... going on 5 days now. Just very soft / liquid stools. My appetite is great. I'm a little tired and also have a hoarse voice from the dry weather. But, I've never had diarrhea stick around this long. I'm replenishing with water and Pedialyte (against my will due to the the added food coloring). But it has really worked well to calm my stomach, but still having the runs. Will research more natural remedies. But, just hoping that getting back onto my strict diet will push out whatever it is I'm dealing with.
Anyways, the point of this update is that I feel I'm linking a few things together. I'm beginning to believe my numbness symptoms and fasciculations are related to my stress, magnesium, and blood sugar levels. When I first wake up, I have quite a few twitches all over and some numbness around my ankles / big toes. As I get up to get into the shower, that generally wears off. After I eat something, the fasics generally improve, but not 100%. If I go a step further by eating lunch and taking a Clonazepam for anxiety I really feel a lot better overall. The reason I noticed this trend is because I am horrible with flying. I know this isn't smart, but I have to approach flying pretty uniquely. Had a bad experience once, so it takes a lot of courage for me to strap myself in. So, for our first flight, I had a few beers, took a Clonazepam, and a Xanax. I was doing great. My stress was low, no numbness while walking. Reduced fasiculation. Same patterns during our other flights and airport walking. The reason I felt it important to bring this up is that most of the doctors I talk with just look at my blood work, give it a thumbs up, look at my MRI, give it a thumbs up, and say "dude... chill out!... it's stress." I don't want my solution to be "anxiety pills, beer, wine." I think the long-term impacts are not favorable. But, it sure gets the constant worry about my symptoms and potential diagnosis (whatever it is) out of my head. Helps me just focus on life! I did have bloodwork to look at my thyroid again. Feedback over the phone is again that "everything is in range." I'm getting a copy mailed to me. Will update again with specific parameters. My sympathies to all those dealing with whatever neurological disorder that is impacting you. :hug: |
What happens with Benzos..like clonazepam...is that you feel better while the drug is working, then when it wears off there is a "price" to pay--rebound. Basically the drugs in this family work on the Gaba system, and when the damper on the nerves is gone, the nerves react more for many people...leading to taking the drugs more often and hence developing tolerance eventually.
I don't buy the "stress" thing 100%. People need some stress to function well. Huge stress over time elevates cortisol too much and this gets into the brain and wreaks havoc with the hippocampus (memory) and other functions. Over time using Benzos become robbing Peter to pay Paul. They create much more symptoms than were relieved in the first place. This is just my observation of people on these drugs for long periods of time. I've seen Klonopin habituees trembling all over when they run short of pills. Some can't even function. When Valium first came out, it was not a controlled substance. Many people became habituated to it, to the point of having seizures when suddenly stopping it. None of this risk was known or revealed by Roche...but it became a health crisis of sorts. I used to see 5-10 bottles of 500 (5mg) go off the shelves per week at one point. At that time it was an unheard of movement of one drug. I was even interviewed by NYTimes reporter about the volume of use of Valium. There was a movie made about it in fact. Of course as Valium lost its patent, Roche came out with Klonopin (clonazepam) which is far more habituating than Valium ever was. It binds very tightly to receptors and has a longer half life...and was promoted mostly for some various seizure types. But in the end it was appropriated by the psychiatric community where it now resides. It is the most difficult to withdraw from, and that can take painful months. We've had posters here describe this process in the past. So taking a Benzo before a painful test or dental work or airplane flight, is one thing. Taking it regularly for fasics...is quite another. Just keep that in mind. And as concerning your GI diarrhea...Pedialyte does not have enough potassium to replace what you are losing with the loose bowels. Neither does Gatorade. One serving of gatorade has 30mg of potassium. 1 twelve oz can of V8 juice has over 800mg of potassium. The body secretes potassium into the colon for temporary storage, and then reabsorbs it slowly to buffer what is not coming in thru food. With chronic diarrhea large amounts of potassium are lost. Foods high in potassium are potatoes, oranges, bananas, cantelope, meat, beans, yogurt, many other fruits. You need 4.5 grams ideally of potassium a day. I'd get some Kefir, with its 12 probiotic content, and drink that --8oz aday--to help restore your bowel flora. You can use Imodium OTC as needed. But if this continues you may have a parasite (Giardia is the most common), and need treatment. Unfortunately the treatment is Flagyl which is hard on the nerves too! So using the Kefir would be a much better approach and also provide potassium for you. Lifeway Kefir is now in most stores. It is inexpensive and tastes really good. |
Another update:
It has been about 3 weeks since I've been on here. I got "Google" friendly and started to research muscle fasciculations more as they have been on the increase (during my trip to Guatemala and since coming home). Of course... I came across &LS. I went into freak out mode over that and basically went into a "relapse" of sorts: - bilateral ulnar problems returned (mild tingling, numbness, some aching) - bilateral median problems returned (mild tingling, numbness, some aching) - left leg shin numbness (transient when walking... not always present) I started doing strength tests multiple times a day and of course started to give myself perceived weakness. I ended up seeing my Neurologist two more times. Each clinical exam I pass with flying colors. I can't demonstrate the twitching. I have minimal pains or numbness. Zero clinical weakness. I had a nerve conduction study on my upper extremities. All she could find was some very mild carpal tunnel on my right wrist and very mild cubital tunnel on my left elbow. Barely detectable. EVERYTHING else came back great on the nerve conduction. She told me I have very minimal "neuropathy"... and mainly in my left arm if anywhere... and that arm gives me the least problems. She also did an EMG (and felt bad doing so). I specifically wanted it for peace of mind. I just wanted to make sure I didn't have any muscle problems or motor neuron problems. She looked at me funny and told me that she could tell me with her eyes closed that I didn't have &LS. I don't even want to spell it out. All my EMG points showed strong neuron amplitudes and activity... so I'm happy there. But, boy am I sore today! I started weaning myself off the Klonopin 10 days ago. I was taking 0.5mg once / day around noon. I'm down to 3/4 of 0.5mg once / day around noon. I plan to continue cutting it down by a 1/4 every two weeks until I'm done. I just don't want that to be a solution. Everything that I'm dealing with seems like it falls into the benign fasciculation syndrome (BFS) category. I've been floating on aboutbfs.com a lot lately. Everyone over there is dealing with what I have... literally to the T. Muscle fasciculations everywhere, transient sensory issues, bilateral ulnar issues, no nerve damage detectable on nerve conduction, normal EMG, symptoms increase when they are sick or stressed out, jello legs out of nowhere. I'm hoping this is all just peripheral nerve hyperexcitability (nerve irritation sending me mixed signals) as opposed to a truly progressive neuropathy. All my doctors and neuros don't use that word neuropathy with me. They use the word stress over and over and over. My approach is to de-stress naturally, eat healthy as much as I can, stay active as much as I can, magnesium lotion, sea salt baths. I'll keep in touch! |
Another Update... and maybe my last:
I've gone through just about every test immaginable the last 6 months. 6 rounds of bloodwork, heavy metal screaning, HIV tests, hepatitis tests, antibodies, urine samples, brain MRI, nerve conduction study, EMG, thyroid tests, food allergy / ALCAT screenings, liver enzymes, adrenal glands. Everything... EVERYTHING has come back clean or in range. The only thing that was ever "out of range" was my intial B6 readings. Those have since come back in range after stopping all B6 supplementation and avoiding it in foods. What I'm basically left with are benign fasciculation syndrom (BFS) like symptoms: - Muscle fasciculations (not constant... they come and go with stress or exertion... but they are EVERYWHERE... zero muscle exceptions). Places twitch that I didn't even know could twitch. - Leg cramps (not constant... these also show up for a couple hours about every 2-3 days) - Some perceived weakness / fatigue (sometimes my right arm will feel jello-like on me or my legs will get spaghetti-like... but it's transient... it will show up for a couple hours then go away... EMG was clean and all clinicals show zero clinical weakness... I can workout like a champ if I wanted to) - Aching / shooting muscle pains. These are very random and also not constant. Primarily my upper back. - Minor sensory issues... not as bad as when this all started (minimal finger numbness, hand tightness) Anyways, after sitting with my neuro for the 6th time, she flat out told me she doesn't think I have anything "diagnosable." No neuropathy. No MS. No ALS. She said 99% she believes I may be dealing with peripheral nerve hyperexcitability, stress, and fibromyalgia if anything. She wants to put me on Lyrica, but my pain is no where near requiring medication. So I'm going to just go natural for a while and see how I do. So, my approach is similar to what it has always been. Eat healthy. Exercise right. De-stress. Epsom salt baths. Magnesium Lotion. My supplementation will be slow and steady if anything. I'm currently just taking an Omega-3 supplement and a Chelated Copper supplement (2mg / day). My copper was within range but on the low end. Best wishes to everyone... none of this is fun. Pathfinding over months... But, I think it's time for me to focus on my wife (8 months pregnant) and others as opposed to myself. |
It can take time to normalize functions and to repair. If you stay away from known nerve toxins, you should be okay.
The one thing you did not test for is CMT.... but if you do not progress you may not need to test for that. Caffeine and OTC decongestants will also cause twitching. And low blood sugar spells will do it too. So keeping the blood sugar as stable (not swinging) is a very good way to control this hyperexcitability. The Zone diet is excellent for this, IMO. It is very balanced and low glycemic. Best wishes for the new baby. You will be very busy very soon! ;) I found that keeping a calm style very useful for handling my son who was a preemie. I credit his presence as a therapeutic thing for me too. If I got the least bit tense he would tense up too! So let that baby be your guide as well! :hug: |
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