My mom tried Lyrica. . . but it didn't help her. She had the disease before taking Lyrica. I believe Lyrica is more effective for diabetic foot pain and neuropathy, but don't know if it works well for many EM cases. With foot problems there is so many things that can be the cause or damaged perhaps, it's impossible to state that one pill will help or be a good treatment. . . as everyone is different.
It would be interesting to find out that someday a common cause for primary EM was found, other than the genetic defect which is "rare". Imagine if it was caused by something rare like the source of "ulcers" being found after years of being a problem without a known cause. Who knows maybe someday they will find a common cause for the primary EM, but I'm skeptical as it's basically a set of symptoms.
Carter/selketine:
I perked up when I saw each of you had Kaiser insurance. I too have Kaiser and have been *very* disappointed with them. My EM is a result of small fiber nerve damage caused by a B12 deficiency that went undiagnosed for several years. During that time I saw several different doctors, a neurologist, and endocrinologist, not a one ordered a B12 test, but they were quick to put me on antidepressants (which made me feel worse). During that time I also developed anhidrosis which is related to small fiber neuropathy (SFN), which means I don't sweat so must be careful about overheating.
This past April I went to the Mayo Clinic (at my own expense) to find out what was wrong with my feet, and was diagnosed with SFN and EM. My Kaiser neurologist had run EMG and NCS tests. Results were normal (these test large nerves) and he said I was fine. He did not even think of SFN or EM as a possibility.
My pernicious anemia (PA) is still not well controlled as I was B12 deficient for so long. The standard treatment protocol does not work well for some, and I have not yet found a Kaiser doc who is knowledgeable about stage 4 PA or EM.
I also experience some chest discomfort and pain (and palpitations), which I believe are a result of the B12 deficiency. You might want to have your/your son's B12 checked if it hasn't been already.
I am extremely sensitive to drugs (result of the SFN or EM?). Tried lorazepam. cymbalta, gabapentin, nortriptylene, had trouble tolerating them. For now I'm taking a daily low dose aspirin.
Interesting, graciousgeekgirl.
How long did u have untreated pernicious anemia? You were found to be anemic, but they didn't check your B12? If so, that is malpractice.
I have EM worse on my right foot. I had surgery last July on that foot. But I had EM before then, I remember months of being able to sleep only when no bedcovers were touching my feet particularly the right. Did need to use a lightweight down throw to keep my feet warm on colder nights.
I, too, wonder if there is some common cause to EM. Could even be an unusual reaction to something like the Epstein-Barr Virus, which persists in the body for life. So maybe like shingles is to the chicken pox virus. EBV has been associated with a lot of very different problems including neurological disturbances like Guillain-Barre Syndrome. Up to 95% of adults have antibodies to EBV, meaning they were exposed to it.
http://www.medicinenet.com/script/main/art.asp?articlekey=89105
OK, but how did the B12 deficiency go unnoticed? If you go to the doctor and complain of fatigue, they'll order a CBC. When that shows u are anemic, they'll order tests to look for deficiencies -- iron, B12, and folate. They didn't do that?
I called a couple of malpractice attorneys but they have never gotten back to me. Guess they don't think there is enough money in it for them.
I think my pernicious anemia (PA) has gone on for years. B12 is stored in the liver for up to 4 - 5 years, so you wouldn't even know for a long time that you were becoming deficient.
Pernicious anemia can be pretty sneaky, it's not like an iron deficiency. The "old school" marker for PA was enlarged blood cells (this is the MCV test, or mean corpuscular volume, in a complete blood test). Since 1998, processed foods and flour in the US have the additive folic acid, which can result in blood cells being within the normal range and not so unusually large. So there isn't an easy way to detect it unless a B12 test is specifically done. Most physicians don't even know to look for it.
The symptoms of B12 deficiency mimic lots of other problems: depression, MS, thyroid problems, dementia/Alzheimers, and more. Many drugs can result in B12 deficiency when used long term -- common ones include PPIs and H2 blockers.
My CBC *NEVER*showed anything was amiss. My MCV was 94, high but not out of normal range (80 - 100). As I mentioned, a normal result for MCV is more common with B12 deficiency these days due to the folic acid additive in foods which suppresses the blood cell size. My Hgb and Hematocrit also were at the high end, but again not out of range. Nothing showed up as being anemic in any of my tests. My cortisol was elevated, but not so much that the endocrinologist was concerned.
In early 2012 I had a battery of tests done when I first noticed the fatigue and feeling a little depressed. My CBC and TSH were all normal so nothing was done. I just drank more coffee to stay awake.
I had symptoms that really began to escalate in August 2015 post-surgery: poor healing, severe fatigue, extreme insomnia, depression, panic attacks, tremors, memory problems, sciatica, shooting pains, felt just horrible, required a walker to get around. My doctor thought I was being a hypochondriac, put me on antidepressants, said I was depressed (could not tolerate Lexapro so quit it after a week). Two months later I was so sick that a friend brought me to the ER. An alert young neurologist there ordered a B12 test with other blood tests, she must have been aware of the symptoms of deficiency. After overnight monitoring, I went home. A couple days later I received an email from a doctor that my B12 was low and should be looked into. That was the ONLY test that ever pointed to a real problem.
Had I not been diagnosed with a B12 deficiency by then, I firmly believe I would have died. It would have been a complete mystery as to what was ailing me.
I have to wonder how many people are running around with undiagnosed low B12 levels. Could be a public health epidemic right under our noses.
I'm a little confused. Were you anemic or not? If you never had a reduced red blood cell count, how were you diagnosed with pernicious anemia? Are you Intrinsic Factor deficient? Is that what was causing the B12 deficiency? You were either not binding the B12 in the small intestine, not consuming enough B12 in your diet, or you had a tapeworm. What did they say caused the deficiency? Since you said it's still not well controlled, i'm guessing you lack Intrinsic Factor? That's an auto-immune disease. Are they giving you B12 shots?
Looking for a B12 deficiency is routine when a patient presents with anemia. I had my B12 tested more than once when I was anemic. Mine was fine.
Blood tests never showed anemia. For over a year I had burning pain in my feet. Know now that is Grierson-Gopalan syndrome caused by B12 deficiency. Podiatrist never considered it.
Yes I tested positive for pernicious anemia after B12 def finally diagnosed. However learned recently that blood draw for intrinsic factor test should be drawn before first B12 shot or can have false positive, so donât know if I truly have it as had shot first. But the nerve damage was done and Iâve continued to worsen. Also had tests for parasites twice, both negative. Small fiber neuropathy continues to spread to my hands and arms. Also have Raynaudâs when I get chilled. Kaiser doc refuses to refer me to a rheumatologist as I saw one 2 months ago and he said I did not have rheumatoid arthritis which was all he was looking for. Neurologist says to take gabapentin which I did not do well with. No other option offered. Basically getting shuttled to group therapy pain session for 8 weeks and thatâs that.
Still I wonder about tapeworm as seem to need B12 often so I supplement. Where would it be going otherwise?
That sounds like a lot to deal with. Mind if I ask how old you are? When did your EM start? How severe is it? If you have any pictures to share, I wouldn't mind seeing them for comparison purposes.
Yep it is a lot to deal with. I'm particularly annoyed with Kaiser as much nerve damage could have been prevented had just one of their doctors bothered to check my B12. Feet started getting sore in Sept 2013 but think I started having actual EM symptoms in Feb 2014, when it really started to hurt having the covers on my right foot when sleeping.
A B12 test should be standard procedure, especially for folks over age 50 or complaining of fatigue and/or depression. I think that B12 deficiency is actually a lot more common than is thought, especially if the low range cutoff got raised to where it needs to be (450 pg/mL). 200 is far too low, as neurological symptoms are known to appear below 450.
I may be over 50, but until this happened I had a great career going in tech (engineer) and felt I could continue working in my field at least another 10 years. This brought an abrupt end to my working life as it was.
My feet often get more red than they look in the photos. Looks like some Raynaud's is going on there too.
Mutations in the SCN9A gene can be associated with EM. However, this test in my case was not covered by insurance and cost over $1000. Less than 15% of EM cases are thought to be cause by mutations in this SCN9A gene. That's a really small proportion. That means that most cases of EM have a different cause (environmental factors, mutations in some other gene, some other illness, etc etc).
The inexperienced doctor I saw years ago mistakenly said this SCN9A test was a definitive test for EM. Obviously he was confused as it's not. Like other members have said, don't make the mistake of blindly trusting everything a specialist says just because he's a doctor.
It takes a lot of effort, but be sure to run things by your family doctor as well as look things up on medical cites like Mayo Clinic and Cleveland Clinic too. Be sure to ask and learn about the risks of any medical procedure or test before agreeing to it. In the beginning, I was so desperate to get better that I submitted to a lot of medical tests and procedures, some of which were unnecessary, painful, and risky just because the doctors wanted to do them. While sometimes tests are needed, it's also very important to avoid unnecessary exposure to radiation (CT scans, etc) at your son's young age.
http://ghr.nlm.nih.gov/condition/erythromelalgia
- If a person has a disease that can cause EM it would seem itâs more likely that it could be secondary EM. It seems like damage to the nerves can cause Eam like symptoms. Remember Eam is a syndrome, with no set cause but many possible causes and some not known. I heard a person involved with the sturdy of the genetic disorder say there are only 30 known fsmilies in the world that has e the genetic version. So the chances of that seem slim to me. But those with the genetic version often have it when they are young. The genetic version usually affects girls more and is transferred through female DNS. If other children or family members have the symptom then he might be a good candidate for the test. Some get EM from a number of causes, see Wikipedia article for lists of possible causes, diabetes being one of the, doctors probably have a reason they think the diabetes didnât cause it. See what they say, but they can make a mistake. Small fiber neuropathy can be caused by nerve damage, and I read of one case where a person was taking nerve pills and developed it and EM in one study so who knows why he seems to be having symptoms. You can confirm its EM by having him do something to place heat in his feet for example washing in warm water will likely cause of make a flare worse and cold will help, thatâs a sign of having Eam the response to hot and cold environments.
Many have occasional frares if he has those and resonpds to Tramadol and Asprin therapy consider yourself lucky compared to the difficult cases out here. Difficult cases may post info on here, but that doesnât mean he will necessarily have a bad version of it, where its totally debilitating for most activity.
You donât have to take the blood test for the genetic defect right away, if your doctor is willing to take the risk with the patient, they might agree to give oral lidocane which is in a pill form. Itâs an old drug that is listed in the Wikipedia article. The doctor might check his heart and monitor it to insure no new dangerous rhythms would happen from the pills. If he prescribes the pill which helps a lot of people with the genetic defect, and you sons responses to that drug it could be a sign that he has the genetic defect, and in that case if he responds to the drug for genetic EM then youâd have a reason to test him.
My mom has a rare version of EM and could go this route. She has so many secondary issues and problems that we havenât gotten her to a state where we can test the drug although our me is willing to try this. If he has run of the mill EM he might be able to try some pills which are different than the genetic one, he could try those pills first, but all pills can cause some kind of side effect.
These are just my opinions, consulted with your doctor or doctors to determine the best path for him. My mom got EM or we believe she did from a drug side effect. But I wonât to into details here, to keep the post short.
Doctors may try pills to repair the nerves, or feel the pills might repair the nerves. neuron tin is tried by some neurologists to see if it can help them.
Remember some pills can have side effects and sometimes the patient has to taper down from a dose of pills.
There is a lot of good experience here and people can give you their histories. And results that may have helped them. That doesnât mean you should take our advice as much as that of a good doctor, but EM is rare, so people often know much more from reading than doctors who may only be seeing your case as their first case. We had a a smart doctor diagnose mom early on before our MDS would say anything was wrong.
