Pilgrim, the US and other countries are using a normal B12 level that is far too low. In the book by Sally Pacholok, "Could It Be B12? An Epidemic of Misdiagnosis", she says that 200 - 450 pg/mL is the gray area where neurological damage is known to occur. Most traditional doctors use 200 as the low cutoff, but Sally says it needs to be raised to 400 or 450. Healthy people should have a B12 around 900 or so. Sally (an RN) and her husband (a doctor, co-authored the book) are actively campaigning for raising the standard cutoff and awareness of this hidden problem.
B12 deficiency can case permanent nerve damage. Symptoms can mimic MS and dementia. Other symptoms include fatigue, hair loss, palpitations, weird aches and pains, enlarged tongue, insomnia, memory loss, numb/tingling hands and feet. Doctors aren't very aware of the symptoms and are more inclined to prescribe antidepressants or pain killers.
Have you been tested for pernicious anemia (PA)? If you have PA you don't absorb B12 from your food and need supplements or shots for life. Your liver stores 3 - 5 years worth of B12 so if soon after going vegan your B12 was low or in the gray area you might have something else going on and might want to consider investigating it further.
A B12 deficiency can be caused by vegan/vegetarian diet (B12 in food is only in meat and dairy), low stomach acid (not enough acid interferes with B12 absorption process, so never take acid reducers like PPIs or H2 blockers for more than a few weeks), gastric surgery, or pernicious anemia.
You need to stop supplementing for 4 - 6 weeks to get an accurate B12 serum test. Otherwise it will be falsely high.
Graciousgeekgirl,Thank you for the indepth info...I actually thought the B-12 level was to close to normal..(225). I am making my VA call right now. Thanks again.
Pilgrim, a request for B12 shots may be rejected as you'll likely be told it's in the normal range. But if you have symptoms (EM is one perhaps you have others) then you may be able to get treatment. Naturopathic doctors use a higher cutoff for normal and should be more willing to treat B12 under 450, but are usually not covered by insurance. Oral supplements are inexpensive so you can always do that if you have to. I recommend you buy the book I mentioned above on Amazon.
See if you can at least get tested for pernicious anemia. Tell the VA if you know PA runs in your family. Maybe a grandmother or aunt had it, seems many more women are affected than men. Can be genetic, particularly among those of Western European origin. If you have PA you may need to take sublinguals (go under your tongue) in high concentrations (1000 mcg or 5000 mcg).
I have autonomic nerve damage (including EM) as a result of a very late diagnosis of B12 deficiency. I'm doing whatever I can to alert others so they can avoid my pain and suffering, since it isn't on the radar of most of the medical establishment these days. Doctors in the 1950s were very aware of this (when B12 was first synthesized, saving many lives) but sadly this knowledge has been forgotten, perhaps partly due to big pharma pushing their drugs. B12 isn't patented so no money in it for them.
I read where you are taking Mexelitine and would like to know how it is working for you. I take Propanolol and Cyproheptadine. I've gotten some relief from both of these meds, but still flaring most evenings. The days are much better, which is a God send! I appreciate any insight you might have on the Mexelitine.
I'm still doing well on Mexiletine. This week marks 3 months I've been on it. Side effects have been minimal, occasional dry mouth and nausea. Overall, It has made it such that I can function normally most of the time. There is not much difference between night and day. I sleep well, though still try to avoid heavy covers. I went back to weight lifting today for the first time in months. That was well tolerated. I felt winded at times and am unsure if that's attributable to the drug. Vigorous cardiovascular exercise is a bit more dicey.
Sometimes I feel a burning like sensation even though the skin remains cold. Other times the skin will appear red, but i'll feel nothing at all. The combination of hot and red skin, what you'd think of as a flare, has only spontaneously occurred once in the past 3 months. My goal is remission and while mexiletine has not provided that, It has been successful.
Thanks for the insight! When you speak of heavy cardio being a bit dicey, is it because it causes flares or does it have something to do with the mexelitine? I go to a bootcamp most mornings and have found if I can workout early in the morning, my feet do “okay”. However, the afternoons are much tougher. I just can’t exercise in the evenings due to the flares. What kind of side affects have you experienced with the mexelitine? Like you, my goal is remission. I’ve improved with the propanolol and cyproheptadine, but still flaring most evenings. I can run tepid water over my feet and elevate for about 20 minutes and can get the flare to calm down. Then I can go about my evening. Flares used to be off and on all day, so this is far better than it used to be. I’m hoping the mexelitine takes me to a new better level.
The description of your symptoms sound very similar to how mine used to be. The one major exception being that my symptoms are primarily in my knees.
Cardiovascular exercise remains problematic because it seemed to cause an increase in secondary symptoms. I was not flaring during activity. I was able to run. I would wrap my knees with cold packs for 15-20 minutes after to preempt outright flaring. I did this on my doctor's recommendation. In subsequent days, however, secondary systems seemed worse. My knees would appear more red/purple. There would be more soreness in my knees. Running definitely didn't seem to have a benign effect, though I was not experiencing flaring. One big caveat is that I was running at 10-11pm at night. It might have been better tolerated in the morning. Unfortunately, I am not a morning person. Weight training in late afternoon/early evening has been well tolerated the past couple days.
I’m going to start Mexiletine on Monday @ 150mg per day for two weeks. If tolerated they will increase the dose. My doc warned me about the nausea it may cause. Just curious what side affects you experienced. Thanks!
I haven't had any side effects that I can attribute to the drug with certainty. About a month after I began taking it I started experiencing vertigo/nausea. That was probably related to a sinus infection and/or allergies. My doctor didn't think the vertigo was related to the mexiletine. Not long after those symptoms began I had a runny nose for a few days. After the runny nose cleared up, so did the vertigo.
I've also had dry mouth occasionally, particularly in the morning. I think that is likely attributably to the medication, but it's not anything troublesome. It's only mildly worse than dry mouth I had previously. It's remedied by simply taking a drink of water.
Otherwise, that's about it. I pretty much take the medication without incident. From what i've read, my experience might be atypical.
I also have good news to report, RE: exercise. I've done a little running every day for the past week. I started with a mile and have done a mile and a half the past 5 days. That's still way below what I used to do daily, but so far seems sustainable. It hasn't had an adverse effect, which is an improvement.
Thanks so much Carter! I’m excited about your exercise tolerance. I know you’ve got to be encouraged! You’ll have to keep me posted on your progress. On a side note, what time of day do you take the Mexelitine?
I take 150mg once every 8 hours. I try to take it at a consistent time, but sometimes the intervals are as short as 6 hours and as large as 10. It's difficult to take at the same time every day.
One thing I did forget to mention – I take it with it food. When I've taken it without, it has sometimes caused a burning sensation in my throat. I assume that's some sort of acid reflux, which i'm not accustomed to. After that happened a few times, i now always follow the medication with either a meal or a snack, which seems to ameliorate said issue.
The exercise progress is encouraging. I'm a personal trainer, so I do know how to design an exercise program. I've made rapid gains in strength and seen positive adaptations to body composition in just a couple weeks. Resuming weight training with my legs may have provided some benefit.
I started the Mexiletine today. Started 150mg once a day. If tolerated will bump to twice a day, etc. When you started at 150mg, what time of day did you take it and did you notice a difference based on when you took the Mexiletine? Appreciate all the insight.
For the first week I took it around lunchtime. I did that mainly because I picked up the prescription around lunchtime and took the first dose immediately. I stuck to that schedule until the dose increased to twice a day in the second week, when I took it morning and night.
I had a very favorable response that was near instantaneous. The last random flare I had was about 4 hours after I took the first dose. Prior to that I was in a perpetual cycle of constant flaring. I had to put ice packs on my knees every few hours. What my doctor says the mexiletine does is that it blocks the pain signals. Because it's not as if my knees look entirely normal. While they often return to normal color at rest now, during activity they can sometimes appear like they did during a flare. There are 2 big differences – 1.) They don't get hot. and 2.) I don't feel anything. Essentially, they just look weird. Not feeling anything is obviously the big difference maker. I do still use ice packs occasionally, but it's very infrequent.
From what i've read on this site, my experience might be more exception than rule. A lot of people seem to say mexiletine didn't work for them. I hope it works well for you.
Sounds good. I too picked mine up at lunch yesterday and started it then. I'll stay with that schedule for now. I did flare yesterday evening, but encouraged by your note above. Our symptoms are parallel other than the fact mine are in my feet. I'll keep you posted. 150mg for two weeks, then if tolerated bumping up to 150mg bid. Praying it works!
What do you think triggered your EM? I think mine was triggered by a nerve injury, or more specifically, attempting to run on an injured knee. I still have a quivering sensation around the site of the initial injury. At times it feels like liquid or something is touching my knee, even though nothing is there. That sensation occurred subsequent to the initial injury, but preceded the EM symptoms. Despite my EM being in both knees, that phantom sensation only occurs in the originally injured knee.
Also, my symptoms were initially much more severe than yours. In past posts you've described controlling flares through "tepid water running over my feet for about 5 minutes and elevation for about 15 -20 minutes." That would not have worked for me. First, elevation could not control flares. I could still flare even with my legs elevated above the level of my heart. Elevation had a very modest benefit of delaying a flare for maybe 60-90 minutes. Second, running water over my legs would have done nothing. I had to keep my knees on ice constantly. In February, I was icing up to 20 hours a day. I slept with ice packs on. I sat with ice packs on. I moved around with ice packs on. When I took them off and my knees would thaw out, the flaring would start immediately. There was no down time. I couldn't walk around the block without ice packs strapped to my knees. It was really vicious.
The first thing that disrupted said cycle was when they began giving me phlebotomies. It never went back to that aggressive, explosive flaring after they started removing blood. It did eventually worsen again, but it was never as painful as it was in February.
I am like you were carterdk I don’t have flares it’s there all the time. I too sit with my feet on ice packs wrapped in a towel all the time. Mine started just my feet but over the years it’s spreading upwards now to my knees.
My dermatologist said it couldn’t be EM as that only flares. I have just had stents in my left leg but if anything it’s worse.
Wow, I am so sorry to hear of the severity for both of you. Mine started in my left foot on rare occasion a few years ago. Then it was like overnight, a switch flipped. I was flaring frequently day and night. After many trials of many medications, the propranolol and cyproheptadine offered relief through out the day. If I get hot during the day, I will flare and anytime I"m outside and it's over 70 degrees I flare. So many things that I have learned to help control the situation has simply been trial and error. I take frankincense and tangerine oil every day and night. I do Cryo-therapy and ozone therapy through out the week. Both are "holistic" type therapies, but have seemed to help along the way. Additionally, we cut out all gluten, grains and most sugars out of our diets. Again, I'm not sure that any one thing has gotten me to where I am. Maybe a multitude of things. Carter, sounds like you are moving in the right direction! Sheltielife, I hope you find some relief soon. I'd take some time and look up the Medicationsense articles for Dr. Cohen. Very insightful, especially the article explaining the "why's". He was bed ridden for 5 years and is now back in normal life doing about 95% of the things he used to do. It's inspirational and likely worth a phone consult if you can. He charges $275, but won't cut you short. He spent an hour with me on the phone and it was so helpful.
That's why the anesthesiologist who diagnosed me (and prescribed mexiletine) originally thought I had Complex Regional Pain Syndrome. CRPS doesn't flare and is always there, is typically triggered by an injury, and causes a high level of pain. But a bone scan of my knees found no evidence to support CRPS. He also said I wouldn't have responded to mexiletine if I had CRPS.
As you know, EM is a difficult thing to diagnose because there is no universal diagnostic tool for it – no blood test, scan, etc. I think I probably have EM, but it's basically an educated guess. It sounds like the same situation with you. EM seems like the default diagnosis if nothing else fits.
That is a different trajectory than mine. In less than three months I went from running 50 miles a week (something I had done for years) to not being able to stand at the bathroom sink for two minutes to brush my teeth. I first had a traumatic injury, one that caused my knee to swell up. There was an ebb and flow for the first couple months after that. It seemed like I was getting better. Then the original injury gave way to something else – a bone crushing pain and pressure in BOTH knees. About two and a half months after that, I began having flaring. The flaring was initially accompanied by a mild fever and pain all over – in my ankles, hips, neck, elbows, and shoulders. After a month, I was left only with the flaring in my knees. The first treatment attempt for the EM was phlebotomy because I was mildly polycythemic. That substantially improved my condition. Then during the summer it worsened again, I was placed on mexiletine, and that brings us to present day.
My origin story is very different from anyone else I've met on here.