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Hello everyone!
Well as it goes lately, when it rains it pours. I need help with a question about Asacol or just help in general.
When Nicole was at the worst of her symptoms, she had an episode where she passed out fell down her bedroom stairs and landed in her living room. She had no recollection as to why how or when she passed out. She recalls her roommate asking her if she was okay and her dog running around scared.
When she passed out, she had loss of bowel control, was confused and did not know what happened. She was taken to the Dr. where she had a CT scan, and was treated for the fall. Her Dr. noted in subsequent follow up visits that she had weakness on the left side of her body and suspected perhaps she had a seizure .
It seems like everything happened at one time, nausea, vomiting, D, the starting of Asacol and the fall. Shortly after the fall, she developed a slight tremor in her left arm. I read one of the side affects of Asacol is tremors. So she discussed with the Dr. He said it is possible, but wanted her to follow up with a Neurologist appt.
She did this week. She had an EEG and it came back odd. The Dr. said that her tracings were not normal, but not quite abnormal. It showed five events in 20 minutes that could not be explained. The Dr. described them as seizure like activity but not exact.
She was put on a seizure medicine and she needs to have an MRI and possibly another test to confirm seizure activity or not in three months.
Does anyone know if Asacol and these tremors that are a side affect cause a false positive on an EEG?
Has anyone else ever experienced this?
Thankfully, at this time, she is still able to drive and the Neuro is taking a cautious approach. Of course, this is just another bump in the road but trying to stay positive is well pretty tough right now.
Oh her pain from the LC has not subsided, her regular Dr. has ordered an ultrasound of the abdomen, he is still concerned about the pain not going away in the same spots. She did feel better on the higher dose of Predinsone but she is off of that now.
Anyway, staying positive here. Thanks again for your continued support and helpful responses.
Sharon
Need some help with Asacol question
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NicolesMom
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- Joined: Thu Nov 04, 2010 11:39 pm
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Need some help with Asacol question
One thing I have learned about having children, they never stop needing you and you never stop worrying about them!
Hi Sharon,
I'm very sorry to hear of what happened to Nicole. It is not uncommon to feel light-headed and have tremors during severe MC episodes. It happened to me at least several times, and on one or two of those occasions, I came very close to passing out before either sitting down and lowering my head to restore blood flow, or getting back into bed.
Her reaction could have been due to dehydration. It could also have been due to a drug reaction, (such as Asacol), or it could have been due to gluten's effect on the brain, (gluten ataxia). Is she following a strict GF diet? MRI scans of my brain show slight abnormalities also - shrinking of the cortex, primarily. This can be caused by aging, (or so it is thought, but the fact is, not everyone's cortex shrinks as they age), a stroke, or gluten damage. Since I also have peripheral neuropathy, (but I'm not diabetic), it's very likely that the brain scan abnormalities are due to gluten damage, IMO. Since I'm not a doctor, though, and about 99.9% of the neurologists in this country seem to be unaware that gluten can cause brain damage, my opinion isn't worth much.
Not knowing what the EEG actually indicated, makes it impossible to even guess at what it might have shown.
I have been on a GF diet for over 8 years not, and in remission, for almost 7 years. I still have a lot of apparently permanent damage resulting from gluten damage before I started the diet. I have major peripheral neuropathy, (very poor ability to feel anything in my feet and lower legs, and I had no reflexes, before starting treatment with massive doses of vitamins B-12, B-9, and B-6). I've also had two episodes, (almost a year apart), where the right side of my face and my right arm have become numb, and stayed that way for a few days. The doctors can't pinpoint the problem, so I have to take stroke-preventative medication, as a precaution. Personally, I feel that the episodes were/are due to gluten-induced nerve damage, but I take the medications, just in case the doctors are right, (I sure wouldn't want to be in the embarrassing position of having them tell me, "I told you so", and not be able to respond. LOL.
Note that gluten is also implicated in many cases involving seizures and related neurological events, (of course, most neurologists are unaware of this). I was actually diagnosed with Parkinson's disease by a neurologist, 2 years ago, (because he misinterpreted my gluten-induced peripheral neuropathy as the symptoms of Parkinson's). In addition to the peripheral neuropathy, I also have balance issues, and for a while, I had a noticeable tremor in my left hand, (all caused by gluten, IMO). Because of all that, he was convinced that I had Parkinson's disease. Since then, fortunately, another neurologist has agreed with me that I do not have Parkinson's, but she has no explanation for my symptoms, (because she too is unaware that gluten causes neurological damage).
Please be aware that a vitamin D deficiency can also cause many, many problems, including abnormal neurological effects. Vitamin D deficiency is implicated in the origins of many cases of inflammatory bowel diseases, and many of us here had low vitamin D levels when we developed the disease. Also, please be aware that MC often leads to a vitamin B-12 deficiency, which can cause all sorts of neurological issues, (including tremors, muscle tics, etc.), as well as other problems, such as pernicious anemia.
Good for her neurologist, for not immediately prescribing drugs. It sounds as though he knows enough about the situation to realize that he is looking at a case with unique issues, (even thought he probably isn't aware of what gluten can do to the brain and central nervous system). If I were Nicole, before I started taking seizure control medications, (those are generally pretty potent drugs, with far-reaching effects), I would adopt the GF diet, (or if I were already following it, I would look for reasons why it is not working, such as other food sensitivities), I would request a blood test for 25(OH)D, (25 hydroxy D), to check my vitamin D level, (and in the meantime, I would begin taking 5,000 IU of vitamin D daily, just as a normal maintenance supplement), and I would start taking substantial doses of B-12, B-9, and B-6. B-12 is usually the problem, but one needs a balance of all three of those vitamins in order to properly absorb B-12.
As you know, I'm not a doctor, and so I certainly am not eminently qualified to advise you or your daughter, but I recognize many of my symptoms in her, when I was at that stage of the disease. If I had cut out gluten earlier in my treatment, I have no doubt that I wouldn't have all the peripheral neuropathy symptoms that I have to deal with now, because some of the damage is reversible, if caught early enough. After a while, though, much of it becomes permanent, and I'm speaking from personal experience.
Good luck with this, because Nicole is in uncharted waters, as far as the medical community is concerned - the neurological effects of gluten are off the radar of most doctors, except for a few cutting-edge researchers, such as Dr. Hadjivassiliou
http://www.ncbi.nlm.nih.gov/pmc/article ... p00560.pdf
Tex
I'm very sorry to hear of what happened to Nicole. It is not uncommon to feel light-headed and have tremors during severe MC episodes. It happened to me at least several times, and on one or two of those occasions, I came very close to passing out before either sitting down and lowering my head to restore blood flow, or getting back into bed.
Her reaction could have been due to dehydration. It could also have been due to a drug reaction, (such as Asacol), or it could have been due to gluten's effect on the brain, (gluten ataxia). Is she following a strict GF diet? MRI scans of my brain show slight abnormalities also - shrinking of the cortex, primarily. This can be caused by aging, (or so it is thought, but the fact is, not everyone's cortex shrinks as they age), a stroke, or gluten damage. Since I also have peripheral neuropathy, (but I'm not diabetic), it's very likely that the brain scan abnormalities are due to gluten damage, IMO. Since I'm not a doctor, though, and about 99.9% of the neurologists in this country seem to be unaware that gluten can cause brain damage, my opinion isn't worth much.
Not knowing what the EEG actually indicated, makes it impossible to even guess at what it might have shown.
I doubt that anyone has done any research on that situation, so these are probably uncharted waters.Sharon wrote:Does anyone know if Asacol and these tremors that are a side affect cause a false positive on an EEG?
I have been on a GF diet for over 8 years not, and in remission, for almost 7 years. I still have a lot of apparently permanent damage resulting from gluten damage before I started the diet. I have major peripheral neuropathy, (very poor ability to feel anything in my feet and lower legs, and I had no reflexes, before starting treatment with massive doses of vitamins B-12, B-9, and B-6). I've also had two episodes, (almost a year apart), where the right side of my face and my right arm have become numb, and stayed that way for a few days. The doctors can't pinpoint the problem, so I have to take stroke-preventative medication, as a precaution. Personally, I feel that the episodes were/are due to gluten-induced nerve damage, but I take the medications, just in case the doctors are right, (I sure wouldn't want to be in the embarrassing position of having them tell me, "I told you so", and not be able to respond. LOL.
Note that gluten is also implicated in many cases involving seizures and related neurological events, (of course, most neurologists are unaware of this). I was actually diagnosed with Parkinson's disease by a neurologist, 2 years ago, (because he misinterpreted my gluten-induced peripheral neuropathy as the symptoms of Parkinson's). In addition to the peripheral neuropathy, I also have balance issues, and for a while, I had a noticeable tremor in my left hand, (all caused by gluten, IMO). Because of all that, he was convinced that I had Parkinson's disease. Since then, fortunately, another neurologist has agreed with me that I do not have Parkinson's, but she has no explanation for my symptoms, (because she too is unaware that gluten causes neurological damage).
Please be aware that a vitamin D deficiency can also cause many, many problems, including abnormal neurological effects. Vitamin D deficiency is implicated in the origins of many cases of inflammatory bowel diseases, and many of us here had low vitamin D levels when we developed the disease. Also, please be aware that MC often leads to a vitamin B-12 deficiency, which can cause all sorts of neurological issues, (including tremors, muscle tics, etc.), as well as other problems, such as pernicious anemia.
Good for her neurologist, for not immediately prescribing drugs. It sounds as though he knows enough about the situation to realize that he is looking at a case with unique issues, (even thought he probably isn't aware of what gluten can do to the brain and central nervous system). If I were Nicole, before I started taking seizure control medications, (those are generally pretty potent drugs, with far-reaching effects), I would adopt the GF diet, (or if I were already following it, I would look for reasons why it is not working, such as other food sensitivities), I would request a blood test for 25(OH)D, (25 hydroxy D), to check my vitamin D level, (and in the meantime, I would begin taking 5,000 IU of vitamin D daily, just as a normal maintenance supplement), and I would start taking substantial doses of B-12, B-9, and B-6. B-12 is usually the problem, but one needs a balance of all three of those vitamins in order to properly absorb B-12.
As you know, I'm not a doctor, and so I certainly am not eminently qualified to advise you or your daughter, but I recognize many of my symptoms in her, when I was at that stage of the disease. If I had cut out gluten earlier in my treatment, I have no doubt that I wouldn't have all the peripheral neuropathy symptoms that I have to deal with now, because some of the damage is reversible, if caught early enough. After a while, though, much of it becomes permanent, and I'm speaking from personal experience.
Good luck with this, because Nicole is in uncharted waters, as far as the medical community is concerned - the neurological effects of gluten are off the radar of most doctors, except for a few cutting-edge researchers, such as Dr. Hadjivassiliou
http://www.ncbi.nlm.nih.gov/pmc/article ... p00560.pdf
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
daughter
Hi Sharon,
I think you should first look at the Asacol as the possible culprit. Doctors can't figure these things out. Most of them don't even know what the side effects of medicine are.
Early in my treatment, I was put on a drug called Imuran, and I came down with seriously swollen glands and rheumatoid arthritis symptoms. I was sent to the cancer center for possible Lymphoma cancer. I ended up going from DR to Dr searching for what was wrong with me. It was a nightmare. They wanted to take biopsies of my salivary glands and all kinds of horrible tests. It was very scary and upsetting.
After several months,I decided to stop the medicine I had been prescribed to see if it was causing all these things, and when I stopped all my symptoms cleared up within a couple of weeks. It was unbeliveble that not one doctor ever said to me that maybe I should get off of my medicine.
As usual I had to be my own Doctor....
Sharon, all of us here have told you that your daugter should try Entocort. Her stomach pain will go away...and maybe all of her other symptoms she is experiencing now will go away too.
With love,
karen
I think you should first look at the Asacol as the possible culprit. Doctors can't figure these things out. Most of them don't even know what the side effects of medicine are.
Early in my treatment, I was put on a drug called Imuran, and I came down with seriously swollen glands and rheumatoid arthritis symptoms. I was sent to the cancer center for possible Lymphoma cancer. I ended up going from DR to Dr searching for what was wrong with me. It was a nightmare. They wanted to take biopsies of my salivary glands and all kinds of horrible tests. It was very scary and upsetting.
After several months,I decided to stop the medicine I had been prescribed to see if it was causing all these things, and when I stopped all my symptoms cleared up within a couple of weeks. It was unbeliveble that not one doctor ever said to me that maybe I should get off of my medicine.
As usual I had to be my own Doctor....
Sharon, all of us here have told you that your daugter should try Entocort. Her stomach pain will go away...and maybe all of her other symptoms she is experiencing now will go away too.
With love,
karen