Guest guest Posted June 21, 1999 Report Share Posted June 21, 1999 Holly, I think you should seek another opinion, this time from a neurosurgeon, not a neurologist. Depending on who you see, they are usually much more knowledgeable about chiari. All of the symptoms you listed sound suspiciously related to chiari to me. Sheila --- Holly Hulen wrote: > > Hi All, > I am one of the new quiet ones in the group. Your > posts have been a wealth of information as I have > been > learning about my recent diagonsis of chiari 1. I > just > talked wih my neurologist today though and he does > not > believe my symptoms are coming from the > malformation, > except fot maybe the nystagmus. He says that chiari > malformations are like being bald...just a strang > malfunction and not the root of all evils. I guess I > thought my symptoms sounded like the symptoms > mentioned on the web sight...fatigue, pin & needles in > hands and feet, sensitivity to light, some > dizziness, > clumsy, daily occipital headaches, muscle fatigue, > trouble focusing blah blah blah etc etc etc. Anyway, > he wants me to come in on Monday for EMG/nerve > conduction velocity tests. Is this usual? I have > some > ideas of what he is looking for. I guess I am so > surprised he doesn't think the chiari has anything > to > do with it. I have had an MRI of head, cervical & > thoracic spine which revealed only the chiari, and > not > a syrinx. Anyway, I am beginning to ramble. Is this > doctor on track , am I headed for another diagnosis > as > well? I would greatly appreciate any input you have. > And thankyou to those of you who have replied to my > previous questions. I am sorry I have not replied > back > lately as I have been in La La land... is this not a > Chiari symptom or what? Oh well Bye. > > Holly from VA > ------------------------------------------------------------------------ > > eGroups.com home: > /group/chiari > - Simplifying group > communications > > > > > ------------------------------------------------------------------------ eGroups.com home: /group/chiari - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi Carla, Your symptoms do coincide with ms symptoms. If it is ms there are a lot of things that you can do to improve your circumstances. You are doing the right thing by avoiding the steroids. Ms can surely be a problem at times but these times pass and some if not most of the symptoms can be prevented ( hopefully and usually). Get an "" blood test to identify any unknown food allergies and then avoid those foods. Avoid dairy products, sugar, and probably gluten. Go to www.copingandprevailing.com If you cannot afford to pay for the book send me your mailing address and I will send it to you. Regards, Tom questions Dear group..I have been reading your posts for awhile now and decided to ask some questions as most of you seem well informed about MS. My medical history starts 2 years ago when I was diagnosed with Viral Labrynthitis. Shortly after that I had shingles. I was also diagnosed with high cholestrol and put on statins for a short time. I told my doc I would not take them as the pain in my legs and arms got very bad. I have been off them for about 1 year now. Now I have muscle pain that sometimes makes walking very difficult, it's mostly in the thighs and calfs and I do best in a store hanging on to a cart. Sometimes I say the dumbest things and I know it's not right but it seems the right words just aren't there. If I'm walking with someone on my right side I'm ok but not on my left..then I go toward that side. I also have an area on my right leg just above the knee that every once in a while becomes very hot. I have had eye twitches for awhile too. I have been to my doc and she keeps telling me it's from the viral thing. I've been to a specialist that wanted to put me on prednisone and I said no. Do all these things sound like MS? Some mornings when I get up I can hardly stand and others are ok and by 6:00 pm, I am ready for bed..thanks for any help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2004 Report Share Posted July 5, 2004 Hi Carla, As Tom said, your symptoms can also be attributed to MS. Eating in a healthy way, exercising regularly (walking is good) and working on stress management are all import. Was the specialist that you saw someone who was familiar with MS? Why was prednisone suggested? Prednisone is commonly used for short time for acute symptoms of MS. MS is a "diagnosis of exclusion", though, and there are a number of tests that can help diagnose it. It is important to try to find a diagnosis, though, because there are medications to help control the episodes of symptom increase with MS, and it's important to start on them as soon as you can. Keep in touch! Sam Bayuk wrote: Hi Carla, Your symptoms do coincide with ms symptoms. If it is ms there are a lot of things that you can do to improve your circumstances. You are doing the right thing by avoiding the steroids. Ms can surely be a problem at times but these times pass and some if not most of the symptoms can be prevented ( hopefully and usually). Get an "" blood test to identify any unknown food allergies and then avoid those foods. Avoid dairy products, sugar, and probably gluten. Go to www.copingandprevailing.com If you cannot afford to pay for the book send me your mailing address and I will send it to you. Regards, Tom ----- Original Message ----- From: Carla Bradshaw To: MSersLife Sent: Sunday, July 04, 2004 8:24 PM Subject: questions Dear group..I have been reading your posts for awhile now and decided to ask some questions as most of you seem well informed about MS. My medical history starts 2 years ago when I was diagnosed with Viral Labrynthitis. Shortly after that I had shingles. I was also diagnosed with high cholestrol and put on statins for a short time. I told my doc I would not take them as the pain in my legs and arms got very bad. I have been off them for about 1 year now. Now I have muscle pain that sometimes makes walking very difficult, it's mostly in the thighs and calfs and I do best in a store hanging on to a cart. Sometimes I say the dumbest things and I know it's not right but it seems the right words just aren't there. If I'm walking with someone on my right side I'm ok but not on my left..then I go toward that side. I also have an area on my right leg just above the knee that every once in a while becomes very hot. I have had eye twitches for awhile too. I have been to my doc and she keeps telling me it's from the viral thing. I've been to a specialist that wanted to put me on prednisone and I said no. Do all these things sound like MS? Some mornings when I get up I can hardly stand and others are ok and by 6:00 pm, I am ready for bed..thanks for any help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 I learned that the people you expect to be there run and the people you would NOT expect stay. My husband filed for divorce after I was diagnosed. Thats OK because he has been ordered by the courts in Illinois to pay me alimony for the rest of my life or his. Judge's do not look kindly on men walking away from sick spouses! I have learned that G-d never gives you more then you can handle. Take help when offered, talk with anyone that will listen. I have a psychologist I see every week which helps with some issues. Being single now I have learned NOT to tell every man I meet that I have MS as they all think of Annette Funnichello and do not see the person I really am. I am fortunate I walk without assistance and do not look sick. But I live with pain every day! My favorite is when I park in the handicap spaces at the mall or grocery store and people ask me what right I have to park in the space (and they do ask) and I tell them if they would like to take my MS I will take the furthest parking space. Most walk away, some embarrassed, others ask me about MS. The ones that ask about MS is one more informed person! RobynLYNN wrote: WHAT HAS MS BROUGHT OUT IN YOU?? WHAT HAVE YOU LEARNT ABOUT YOURSELF? WHAT TRAITS HAVE YOU NOTICED THAT YOU WERE UNAWARE OF BMS [YOU KNOW BEFORE MS] WHAT HAVE YOU LEARNT ABOUT YOUR CAREGIVER? Lynn (Moderator/Helper)wishing you and yoursLove and Happiness;Flowers and Butterflies Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2004 Report Share Posted August 20, 2004 now 34 years old could run and dance in 1998 / diagnosed 99 and stopped WHAT HAS MS BROUGHT OUT IN YOU?? Perseverance: I take it is it comes. Walk when I need to and rest when I must. I have slowed greatly in the past 2 years; I expect due to the stressful moments of my job. I have my silver headed walking stick, wear shorts and hard soled shoes, keep out of direct sun. With a focus on the path 6ft. directly before me and make my way like I was walking on the ocean floor. WHAT HAVE YOU LEARNT ABOUT YOURSELF? WHAT TRAITS HAVE YOU NOTICED THAT YOU WERE UNAWARE OF BMS [YOU KNOW BEFORE MS] Humility: I was not invincible, I must do better or I will stop/drop and not get up. I've always been a person with great a great attitude and perpetual cheeriness, but even I slide into darker internal moods. (fatalistic) To keep myself moving, I think I'll get myself a "Recumbent Fan Bike" WHAT HAVE YOU LEARNT ABOUT YOUR CAREGIVER? She was a wonderful lady and girlfriend. -before and after diagnosis She has been beautiful wife. -doesn't wait-on-me, but is patient with me She is now an excellent mother. -AND wants 2 more! Her quiet expectations are my guidance through a life I never expected My 1yr old boy is a taunting inspiration. He's almost faster than me now so I had better get/keep exercising to chase after him. - / California Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2012 Report Share Posted August 19, 2012 Hello, I have a 7 year old son who was born 3 months early at 1 pound. He has been on Miralax almost his entire life. I have just now gotten him OFF of it by increasing probiotics, prune juice, digestive enzymes, black cherry juice concentrate, and magnesium. I just wondered what things you have given your children to help them with chronic constipation and " holding " , and also if you know if there is any risk of discontinuing Miralax after being on it so long. He has gone 3 to 4 days now without any at all and I just want to make sure it is ok, since his body has taken it almost daily for years. Thank you for your help. sfranklin568@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2012 Report Share Posted August 19, 2012 , we're concerned about the effects it has on the bowel / gut / brain. There's a symtpom called ileus reported on the FDA adverse reactions that is a paralytic condition that leave one with no feeling, therefore they couldn't go if they wanted to. This condition is confirmed that it can be caused by chemicals. We are also concerned about the immediate neuro behaviors such as being paranoid, obsessive ocd behavior such as repetative chewing, sucking, licking.........see below Many parents see an immediate improvement in behavoir once they take them off.......... Jeanie Drug Safety Oversight Board Meeting, June 18, 2009 Public Summary The Executive Director updated the Board on risk communications [Public Health Advisories (PHAs), Early Communications about Ongoing Safety Reviews (ECs), and Information for Healthcare Professionals (HCP)] posted and in development since the May 21, 2009 meeting. The following is a list of the posted risk communications: June 4, 2009 - Propylthiouracil and hepatic failure1 June 11, 2009 - Increased mortality associated with CNI conversion to sirolimus in transplant patients2 June 12, 2009 - Singulair and neuropsychiatric events3 June 15, 2009 - Cardiovascular risk and Stimulant Medications in Children with ADHD4 June 16, 2009 - Zicam Cold Remedy Intranasal Products5 June 17, 2009 - Cefepime and increased mortality6 The Drug Safety Oversight Board discussed reports of metabolic acidosis, metabolic acidosis with increased anion gap, and neuropsychiatric adverse events in children using polyethylene glycol (PEG) products. Metabolic acidosis is a disturbance in the body's acid-base balance and causes too much acid in the blood. In some situations, metabolic acidosis can be a mild, chronic condition; however, it may lead to shock or death in severe cases. Neuropsychiatric adverse events may include seizures, tremors, tics, headache, anxiety, lethargy, sedation, aggression, rages, obsessive-compulsive behaviors including repetitive chewing and sucking, paranoia and mood swings. To: miralax Sent: Sun, August 19, 2012 10:48:47 AMSubject: Questions Hello,I have a 7 year old son who was born 3 months early at 1 pound. He has been on Miralax almost his entire life. :(I have just now gotten him OFF of it by increasing probiotics, prune juice, digestive enzymes, black cherry juice concentrate, and magnesium. I just wondered what things you have given your children to help them with chronic constipation and "holding", and also if you know if there is any risk of discontinuing Miralax after being on it so long. He has gone 3 to 4 days now without any at all and I just want to make sure it is ok, since his body has taken it almost daily for years. Thank you for your help. sfranklin568@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2012 Report Share Posted August 19, 2012 It sounds like you are doing everything right. If you need an option other than prune juice many of us use Plum Smart plum juice, it works equally as well & tastes so much better more like regular fruit juice. To my knowledge ther have been no reports of side effects off of Miralax, there are serious side effects ON Miralax. My dd was on it for 6 years & I took her off cold turkey & implemented many of the things you have. Alot of trial & error & some things stopped working. Now all she needs is 1 tbsn of Cal Mag & 1 glass of Plum Smart with dinner everyday & she goes 2 x day. She is 12 y.o. & 80 lbs HTH, Yvette Questions Hello,I have a 7 year old son who was born 3 months early at 1 pound. He has been on Miralax almost his entire life. :(I have just now gotten him OFF of it by increasing probiotics, prune juice, digestive enzymes, black cherry juice concentrate, and magnesium. I just wondered what things you have given your children to help them with chronic constipation and "holding", and also if you know if there is any risk of discontinuing Miralax after being on it so long. He has gone 3 to 4 days now without any at all and I just want to make sure it is ok, since his body has taken it almost daily for years. Thank you for your help. sfranklin568@... Quote Link to comment Share on other sites More sharing options...
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