My mom has Barre-Liou-Syndrome, does anyone know how to help me get through it? Where can i find info?
105105
First i would like to say i'm sorry that your mom and yourself are dealing with these condition, here is a support group site maybe it will help.\nhttp://www.medhelp.org/HealthTopics/Chronic_Pain.html\nHere is a site for more information aboutBarre-Liou-Syndrome.\nhttp://www.caringmedical.com/media/article.asp?\narticle_id=178\nhttp://www.jointrehab.com/barre-lieou_syndrome.htm
351059
Many years ago, I met a man who had Guillain-Barré Syndrome. He has since died (of a heart attack, not GBS). He didn't talk too much about it, but did say that it made him feel very weak. He was still ambulatory, not confined to a wheelchair. Sometimes, even after just a small amount of walking, he would pant for breath. He said several times that it also caused trouble with his going to the bathroom, due to a lack of muscle control.\n\nYou've probably already seen this, but here's a description of the symptoms of GBS:\n\nhttp://www.guillain-barre.com/overview.html
1164358
contact the American Cancer Society and explain what is going on. If she was a church member contact the local church of her denomination and ask for assistance. There are several other cancer groups that will pay stipends to people in your mom's situation but I can't think of the names of any of the others at the moment. Ask whomever is providing her wheel chair for leads on getting assistance. Do a Google search for groups that will help with her drug costs or contact the individual drug companies and ask about their patient assistance programs. Also ask her oncologist for any helpful leads. Treasure the time you have with your mom, because this may be your last opportunity to really spend some time together. Turn her staying with you into a positive and not a negative, despite her illness.
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Here is a foundation for GBS: http://www.gbsfi.com/\nAnd another link with lots of information, treatment options, etc:\nhttp://www.nlm.nih.gov/medlineplus/guillainbarresyndrome.html\n\nI would talk to his nurses/doctors and see if he has hit his limit on physical rehab.
106956
Your mother should be very careful with this.  She possibly may need to go on to medication.  My mother (who is overweight) always experienced blood clots in her legs.  She would treat them as they came/went (with heat and massage) until one traveled up her leg, into her heart (where it loged itself) and pieces began breaking off...one to her brain causing a stroke and one to her lung.  She now take warafin (blood thinners) and is going for weight loss surgery so she won't have to take them anymore.  There is a definite relation between weight and the occurance of clots.\nPlease get your mom to go to her MD...prevention is the best medicine!!  Let me tell you...teaching my mom the alphabet, how to read and write (after the stroke) was the hardest thing I've ever had to do.
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Introduction \nGuillain-Barre syndrome (GBS) is also called as acute idiopathic polyradiculoneuritis. This is the most common aquired demyelinating disease. This disease is characterized by the inflammatory disorder of the peripheral nerves. The incidence of Guillain-Barre syndrome is one in 100,000. The life time risk for any one individual getting Guillain-Barre syndrome (GBS) is 1/1000. All age group may affected by GBS. Both sexes are equally affected. The disease is characterized by weakness of limbs and numbness and tingling sensation over the limbs, body and the face. Mild cases of Guillain-Barre syndrome may present only with ataxia (difficulty in walking and balancing), whereas severe cases may present with difficulty in respiration due to paralysis the respiratory muscles and cranial nerves. \n\nWhat causes Guillain-Barre Syndrome? \nThe actual cause for Guillain-Barre syndrome is still not known. It may be an autoimmune disease; in which antibodies are directed against the peripheral myelin (myelin is the sheath covering of the peripheral nerves and is responsible for faster conduction of nerve signals). \nA mild respiratory or gastrointestinal infection may be present 1-3 weeks before the onset of neurological symptoms in 60% of the patients.   Infection with Campylobacter jejuni is the most often found association with Guillain-Barre syndrome. \nViral infection, minor surgery, immunization, mycoplasma infection may also be a preceding event in Guillain-Barre syndrome.  High frequency of occurrence of this Guillaine-Barre syndrome is found in the following conditions than in the normal population: Hodgkin's disease, lymphoma, systemic lupus erythematosis. \n\nWhat are the symptoms of Guillaine-Barre syndrome? \nMost of the patients present with numbness and tingling of the limbs in the initial phase of the disease.   The major complaint is the weakness of limbs which will be mostly symmetrical. Both proximal and distal parts of the limbs are affected. The lower limbs are affected first. Then the weakness spreads to trunk, respiratory muscles, upper limbs, neck muscles and cranial muscles.  Sometimes the weakness may progress to complete paralysis of the body leading to respiratory difficulty and death in a few days. About 50% of the patients, complaint of pain and aching discomfort of the hip, thigh and back muscles. \nFacial muscle weakness may be present in 50% of the cases. Facial muscle weakness usually comes after the upper arm weakness.  Difficulty in passing urine (urinary retention) occurs in 15% of the patients. \n\nHow do you diagnose Guillaine-Barre syndrome? \nMost of the time, a thorough neurological examination with laboratory investigation will clinch the diagnosis of Guillaine-Barre syndrome. \n\nFeatures required for diagnosis of Guillain-Barre syndrome (GBS) : \nProgressive motor weakness of more than one limb: \nFrom minimal weakness with or without ataxia (difficulty if balancing) to complete paralysis, which may include cranial nerves. Proximal muscles are more affected than distal ones. \nAreflexia(loss of muscle stretch reflexes)-usually universal \n\nFeatures strongly supportive of diagnosis of Guillain-Barre syndrome (GBS) : \nProgression of the motor weakness in the patient peaks at 2 weeks in 50%, by 3 weeks in 80% and by 4 weeks in 90%. \n\nThere is relative symmetry of weakness in the body. That is, both half of the body are equally affected. \n\nMild sensory symptoms-mild tingling and numbness in hand and feet. \n\nCranial nerve involvement: Facial weakness in 50%, usually bilateral. \n\nOropharyngeal muscles (muscles of the oral cavity and throat) may be affected. \n\nRecovery of the patient starts usually by 2-4 weeks after the progression stops, but may be delayed by months \n\nTachycardia (increase in heart rate), postural hypotension \nFever, sensory loss with pain, bladder paralysis (urinary retention) \n\nLumbar puncture is done and the Cerebrospinal fluid (brain fluid) is e
1170925
Hey my mom has had ms since before i was born i think and Im 16 now...it hasnt really affected my life. sure it restricts our activities together but I love her more than ever..A few of my friends family members have it too and they feel the same way..sure i get really frustrated when we're like..out and she gets tierd all of a sudden and we have to leave or if she has a mood swing because of pain but i cant blame her. id be angry too
361135
Here are a bunch of sites that cover the treatment of Sarcoidosis. They should help. I'll pray for you and your mom that she gets better. You're a good son...God bless you and her both.\nhttp://www.google.com/search?hl=en&lr=&q=Sarcoidosis+treatment
457837
contact your nearest phsycology help centre, you'll find plenty of help there. internet is very limited.
724803
Rest and a well balanced diet seemed to help my mom when she was going through it, but here's a link to the American Cancer Society's suggestions:\nhttp://www.cancer.org/docroot/MBC/content/MBC_2_2X_What_About_Fatigue.asp?sitearea=MBC
244674
its really tough.  My mom had CFS (also known as myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS)) for at least 10 years and still has issues\n\naloe juice can help, especially with the bowels, routines are a must, and make sure that exercise is performed as frequently as possible, even if she is exhausted.\n\nTreatment for chronic fatigue syndrome (CFS) focuses on making you feel better so that you can resume a normal life. Simple measures you can take at home—such as improving your sleep habits and getting gentle exercise—are important parts of treatment. Talking with a counselor or psychologist has been proven to be helpful for people with CFS.6, 7\n\nAlthough there is no cure for CFS, many of its symptoms do respond to treatment.
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Hello again there!  Sorry to hear about how you feel.  I also have CFS or abstein bar.  I'm a bit of a pro at it, the difference with me is that I am a new person after my treatment. CFS starts out as Mononucleosis (MONO) the virus which if untreated turns to CFS, so that's why my doctor treats it with Valtrex.  Depression and anxiety come with CFS which also causes joint and muscle soreness, that's where the antidepressants come in.  As far as the fybromyalgia the only thing I know for it is pain management and that is something I don't dare explain because I have no personal experience but from my mother having it I know it's not easy to treat. Listen, if your doctor disagrees with the treatment that I just described to you as far as the CFS then you need to find someone who is more open to your health solutions. I love my doctor, he's so wonderful that my trust in him is unmentionable. I know it's scary to try someone new, but you need to feel better.  Wouldn't you like to feel normal again?  Be able to get up when you wake up and go.  Not fall asleep at the wheel.  You get my point.  I'm a new person and I have a new baby.  Believe me it feels good to be awake and the weight of the world is now a lot more manageable.  By the way drinking makes it worse, a lot worse!  So if you do, you need to take a break until you're all better.  Believe me it didn't help me any, I thank GOD for today. Chat with you later   I hope this info helps u a little bit. By the way if you're having trouble with a day at a time, try an hour at a  time.  Sounds like you're under a lot of stress and that makes the CFS worse all of the time.  Help is on the way,  you'll be alright. My doctor always reassured me that I'd be o.k., he is very involved with his patients and that's why everyone loves and trusts him so much
1154365
It took me over a year of solitary struggle before I wised up and contacted my local (150 miles away!) Alzheimer's support group... It was the best thing I could have done for both of us! They have excellent information on every aspect of caring for you, your family and the one affected. \nIf it is a close family member (in my case my mom) who lives with you, this disease will impact every facet of your life and can rapidly become overwhelming. The support provided by others in the same situation can be priceless.\nThere is so much you can do to make everyone's life so much easier... from learning how to prevent inadvertently making your loved ones mental outlook worse to helping your children deal with the changes and irrationality. (I have provided a link below to a Chapter search.) They have a good information packet they can send and meetings you can attend if you are close enough. \nMy heart and prayers go out to you... This disease can be devastating for all involved. It can also have moments you will forever treasure as you help your loved one through this final transition with compassion and understanding.\nMy mother is gone now and though it was the most difficult and traumatic 5 years I ever endured, I don't regret one day of the experience.
1110208
I do not have MS, but my first husband did and my sister-in-law has it.  There are a lot of support groups for MS and if you contact them, I'm sure you could get on line with other people.  Also, going to the group meetings are very helpful.  My brother ran a group years ago and people helped each other with ideas, medical info, and personal support, etc.  Your doctor or hospital can put you in touch with a contact person.  I wish you strength and I'll say a prayer for  you.  Keep a positive attitude and stay busy.
492965
Oh No :( ..\nI would definetly call at least her doctor, and see what  he suggests. If he knows her wishes are to die at home,and not in a Hospital, at least he may be able to give you some suggestions. That is just terrible, and I am very sorry for you and your family. She must be a very special woman to have lived so long! My thoughts and prayers are with you all.
170405
i can only recommend not to push her or insist too much\nyou have no idea what that disease is like and how it affects one's life -i hope you never find out-\nhope you mom gets better soon
724477
my mother.  while she was pregnant with me she was diagnosed with multiple sclerosis, but she didn't let that get her down.  after i was born, (i'm the youngest of 3) she put herself through college while juggling a husband and 3 young kids.  the year that i started kindergarden was her first year teaching elementary.  she put her heart and soul into everything she did, and she touched so many students' lives.  a few years later, my father was injured on the job and had to have several back and knee operations, and he was not able to work for about 3 years.  my mother single handedly raised a family of 5 on her teacher's salary, which is hardly anything.  no matter how tight money was, she always made sure that we had everything that we needed.  there would be times that her disease would get the best of her, and she wouldn't be able to use her hands, but she wouldn't let that stop her either.  she'd get me and my sisters to help her put on her makeup and do her hair and drive her to work everyday, because she refused to give up.  my senior year of high school came around, and her school district forced her to take retirement with a disability, because they felt that her condition was to the point that she could no longer perform her duties as a teacher.  this broke her heart.  from there, her condition has had a steady decline.  she's one of the few ms patients that the disease also interferes mentaly as well as physically.  now i'm 24, and my mother is not capable of taking care of herself.  she has very limited mobility, and she has the mental capacity of a young child.  but despite what her disease has done to her, she still gives me the biggest hugs and always tells me how much she loves me.  now that i'm grown with daughters of my own, i hope that i can be half the mother to my daughters as she was to me.