myasthenia gravis-is it possible to lead a normal life with it?
485460
My Aunts have this--they are all in their 50's.  None of them were diagnosed with it until they were in their late 40's & early 50's.  They are all 3 coping diferently with it as it has affected them each differently.  They all still lead very active lives and don't let it slow them down.  It's a matter of mind over matter--they each make sure they get plenty of rest before and after things that they know will wear them out, are careful about their diets, and have sought the most agressive treatments they can get.  They are all happy in their lives and haven't let the disease control their lives.  They treat it like everything else they've had to deal with in thier lives--it's just another challenge!
750391
I know some one who had suffered from this problem, his was also due to M.S.. His eyes made small involuntary movements, but the condition seems to have disappeared. He is taking a virtually unknown prescription drug that is working miracles in people with M.S.and other autoimmune disorders, it is known as Low Dose Naltrexone. Doctor Bernard Bihari of New York City has been working with this drug since the 80's. and it is just now starting to get some attention. The second annual Low Dose Naltrexone Conference was held in Washington this year, you can hear the lectures off the web site. Because the monthly treatment cost is only $38 u.s. per patient don't expect any drug company involvement any time soon. A few private clinical trails have commenced world wide and the preliminary results are all quite promising. If you have not heard of this little know treatment yet. try clicking on the link below and start your research, it might be a viable option for you.\n\nAnother very important avenue you should explore when treating M.S. is neurotoxin damage both dietary and environmental. Things like monosodium glutamate, aspartame, heavy metals,food additives, preservatives, fungal and bacterial mycotoxins maybe causing or exacerbating your condition. Many M.S. sufferers have made their symptoms disappear by eliminating the above mentioned poisons from their body.\n\nBecause most packaged foods have M.S.G. (under a disguised category such as modified corn starch, spices, yeast extract, hydrolyzed vegetable protein etc.) I would stick to fresh organically raised foods, stay away from anything packaged . Drink clean distilled or R.O. water only.\n\nGet checked for heavy metal contamination, have both Hair analysis and Urinalysis through Calcium EDTA provocation. There is a possibility that you have mercury poisoning, from either vaccination, or through food consumption. If you are positive for heavy metals, then chelation therapy should be explored. Dr Gary Gordon of Tempe Arizona is the expert here. He also works with Dr Amy Yasko that specializes in patients with neurological disorders.\n\nTo check for biotoxin exposure I would recommend Dr.Shoemaker’s website listed below. On his site there is information on doing a VCS (visual contrast sensitivity) test. This doctor specializes on treating people with biotoxin-induced illness.\n\nSome final recommendations I have for you is to look into: enzyme therapy such as Wobenzym N, (it is very popular in Europe especially Germany), Vitamin D therapy and Histamine therapy \n\nAlthough the doctors mentioned below are available for phone consultations, Dr Bihari will be extremely difficult to speak with, instead I would call one of the compounding pharmacies listed on the web site and ask for names of doctors in your area that might be sending prescriptions to them.\n\nI have confidence that you can beat this thing, or put it into remission, all the best to you!
890666
I think what has helped me the most personally is to find a station or purpose in life - that is, to realize that as a human being you are both worthy of life, and useful to society.  I find that if I believe I can do something for society, then that helps me maintain my inner peace and will to live.\n\nPersonally, I am going to enter graduate school (master's degree program) in industrial engineering next year and want to find ways by which we can develop medical treatments much faster than we do now.  So far, this is my motivation.\n\nOf course, I do suffer from bipolar disorder, and by this, I do mean there is a genuine neurological problem in my brain, and I do take medications for it.  However, without convincing myself of a purpose in life, these medications would do nothing for me.\n\nAlso, other stuff that won't hurt are proper diet and regular exercise.  By exercise, I don't mean cycling the Tour de France all the time, I just mean regular brisk walks, stretching, yoga, etc.  I find running and cycling to be good forms of meditation, actually, since they are somewhat "mindless" forms of exercise (unlike say, ball sports) and you can let your thoughts wander.  Of course, just pay attention to traffic and don't get hit. :-)\n\nIn any event, best of luck, and I hope you do find inner peace and calm, whatever the route you choose.
390214
People with MD, if they need a wheelchair, can't feel anything "down there" and can't have a sex life.\n\nGradual debilitation and loss of interest in sex are inevitable if you have a neuromuscular disease.\n\nYou can protect someone with MD from pain and disappointment by discouraging romantic relationships and ignoring an awakening sex drive.
849381
I'm disabled with mental illness and my mom and dad don't get it, or where I'm coming from, mostly because I was adopted and that presents two major barriers to understanding, and they continue to think I could snap out of it any day now. \n\nSince you're disabled and can't get away from them for financial reasons, you're going to have to learn how to stop listening to their BS, which is probably all they have to say to you. The best thing that I ever learned was that critical people are just projecting their own inner issues, and what they say is not a reflection on your worth as a person. No one else can tell you who you are. You have to define yourself, find your own passions and pursue them to the best of your ability. If you're sick, then getting well should be your number one goal in life. Don't give it up. Life is worth it.
701829
Fibromyalgia is a neurological disorder of hypersensitivity, not a muscular disorder. \n\nFMS isn't, technically, considered to be a degenerative disease at all. It does not directly cause any degradation of muscles or tissues, but can lead to decreased activity, which would of course lead to a decline in muscle tone.\n\nIf FMS isn't treated properly, though, the hypersensitivity can get worse, leading to a greater degree of disability.\n\nAlso, FMS can make any other condition the patient has more difficult to deal with, because it amplifies any associated pain. \n\nFor instance, I have arthritis, which is a degenerative disease, as well as FMS for which I didn't get proper treatment for over a decade after diagnosis. In my case, FMS has been degenerative, and as a result, I am disabled.\n\nMy daughter, on the other hand, was treated as soon as she was diagnosed when she was 9. At 16, she is NOT disabled, nor is she likely to be. She's very active, and she knows that she has to stay aware of the fact that she has FMS but she doesn't have to live in fear because of it. \n\nYour prognosis and course of treatment really depend on your current health and background. The things I suggest most strongly to everyone are to educate yourself, get a good healthcare team of doctors who "believe in" fibromyalgia, and to surround yourself with family and friends who are supportive of you. \n\nStress will make fibromyalgia worse, so reducing the stress you can control in your life will improve your ability to deal with FMS and to deal with the stressors you can't control. If there are negative people around you, remove them. They're poison.\n\nThe same goes for environmental stressors. Drink plenty of clean water - put a filter on your kitchen tap or use a filtered pitcher in your fridge. Reduce the amount of everything else you drink - soda, coffee, alcohol, whatever. Watch what you eat, especially packaged stuff with preservatives and artificial coloring and so on. Put a HEPA air filter in your bedroom and change the air filter on your furnace/air conditioner every month. Keep your living environment as uncluttered as possible, and use non-toxic cleaning products - the Method line that Target carries is pleasant, effective, and reasonably priced. If you smoke, STOP - and don't hang out around people who do smoke. \n\nMove every day, somehow. Stretch, especially - carefully :-) Many people who have fibromyalgia have hypermobile joints (or, more accurately, many people who have hypermobile joints develop fibromyalgia). If you have access to a pool, swim. Non-weight-bearing exercise is great for allowing you to keep moving without increasing your pain levels.\n\nAnd keep your spirits up! Play, treat yourself, have fun. Give yourself a daily "whine budget" and then STOP and move on to focusing on what you can do.\n\nGood luck!
5169
Yes, I would advise you to visit a doctor. If nothing else it will give you more information and piece of mind on your condition.
1026793
Yeah, it has lots of nicknames.   The one you have there is actually "yuppie flu" because for a while people thought that only young, upwardly mobile professionals were getting it.  Ignore the nicknames, they tell you nothing.\n\nNot that the real name is much better.  "Myalgic Encephalomyelitis" - a proper doctor might know the correct spelling.   That basically means "some kind of long term bad thing that's kinda hooked up to the central nervous system, or maybe not, but we're really not sure what it is".  The other name is Chronic Fatigue Syndrome - that's just basically a description of what it does.\n\nMy dad and some friends have had it.  All of the people I've known with it HAVE recovered completely, though some have taken a long time.\n\nThe key for you is, I'm guessing, understanding the condition yourself so that you can educate those around you.  Cos they WILL need education.   First port of call is probably to google for a support group in your area.   Or your doc will probably know one right away.\n\nYou will also get information about theories of what causes it.  Last I heard there was no concensus about that.   BEWARE of "snake-oil" - there will be lots of people trying to persuade you that they have the cure, ranging from new age dreamers to evangelicals even to perhaps mainstream medicine.   Try some of them but be in no rush to do so - do it when you're good and ready.   What you will now have plenty of - is time.
342585
I can't say I know a ton about Pharmacy and the oppertunities available, but I do know quite a bit about MS as my mom has it as well.  She isn't wheelchair bound, but she is very reliant on a cane/walker.  She is able to accomplish many daily tasks.  I think she is actually more active now that she has been forced to retire (due to the MS) than when she was still working.  She occupies her time with new hobbies, such as painting, and sewing.  \n\nJust because you are wheelchair bound doesn't mean you can't make huge contributions.  You could mentor pharmacy students with a local college, or speak about MS and the effects it has on life to students in the health related field.  You could volunteer with your local MS chapter.  They will often come and pick you up.  You can set up a website dealing with MS or pharmacy related issues and information.  Maybe you could start your own ebay business.  You could write a book about your life and experiences in pharmacy and how MS has affected your goals and life as well as family.  There are endless possibilities.
730800
Absolutely.  I have systemic lupus among w/other health problems.  Science will be able to learn a lot from my cadevar.
445263
I suffer from the effects of lupus also. Your energy level is a hard thing to deal with, believe me I know. I personally do what I can when I am able. Have you talked with your doctor about it? My doctor gave me this same advice. "Do what you can when your level is up and rest when you need to". You have to allow your body to catch up. Sometimes when I over do it I end up in bed for days. Each person is different. I hope you have a good relationship with your doctor or doctors like in my case. So, when things change with your body's' health you can get the best advice for you. I would love to talk sometime, since we have the same disease. I know from my own experience that talking helps.
625375
Fibromyalgia is complicated, I have it.  My theory is a little different than alot of others.  I believe it's a breakdown of the immune system due to lymphatic problems.  See the lymph system is responsible for the T and B cells that fight illness.\n\nThis came out recently, excellent article, somewhat backs what I've believed all along, the fibro, CFS and other illnesses come from a whacked out lymph system.\n   \nUK Physician Believes He's Found Proof of Chronic Fatigue Syndrome ImmuneSupport.com\n\n08-10-2005 \n\nDoctor takes stigma out of 'yuppie flu' \nBy Deborah Haile \n\nDr. Raymond Perrin believes he has proof that chronic fatigue syndrome - once dubbed yuppie flu - has a physical cause. \n\nFor years sufferers of CFS - which includes ME - have lived under the stigma of being diagnosed with a condition that many dismissed as being in the mind. But Manchester osteopath Dr. Perrin believes he has proved that the debilitating syndrome is the physical result of the way the body deals with toxins. \n\nHe believes a picture of varicose lymphatic vessels taken during a research project at Salford University shows for the first time the "backflow" of lymphatic drainage that he believes is the cause of toxin build-up. \n\nAnd it is this accumulation of toxins in the central nervous system, which Dr. Perrin believes is the cause of conditions such as chronic fatigue syndrome and ME. \n\nValves \n\nDr. Perrin, who runs clinics in Prestwich, central Manchester and London, said: "Normally these vessels are the size of the thinnest pencil line and you can't usually see them without a magnifying glass, but the fact they are swollen like this is significant. There is a backflow against the valves. \n\n"Very rarely can you see these, but with every person I have seen in the last 16 years with chronic fatigue syndrome you can feel them under the surface. It means this person has had ME for a number of years." \n\nUntil now experts have believed that valves in the lymphatic vessels only allowed the flow of fluids in one direction. But Dr. Perrin says these varicose lymphatic vessels - which resemble varicose veins but are the same colour of the skin instead of a bluish colour - are the proof that the backflow exists, when vessels are damaged, allowing toxins to concentrate in the central nervous system. He revealed the picture at a seminar at Salford University. He hopes to publish it in a respected medical journal later in the year. \n\nMargaret Cannon, who had to give up work because of the condition, said: "After about three months of Raymond's treatment my concentration was restored and the symptoms improved greatly." \n \n\nOnline at http://www.manchesteronline.co.uk/men/news/health/s/168/168143_doctor_takes_stigma_out_of_yuppie_flu.html\n\nPS: allergies, long term ones can mess up the lymphatics by the congestion in the nodes, so it all ties in.
875977
My Dr. and I just discusses this last week. Not all people who go through that are going through it due to being lazy. I have limited things i can do as of exercise as i was a passenger in a car accident that almost broke my neck. My feet are bad and i can't walk much or use a tread mill.\n\nDr. talked about this due to trying to help me lower my blood pressure, diabetes, high cholestrol, ect.\n\n I will review all the info here and all the sites you listed and talk to my Dr. again. Thank you Ziggy for your information.
250730
I'm 44 years old and have it, my daughter has it, too. My dad is 74 has now found out he also had it all his life. It seems to be hereditary. All the doc's say so. The problem has always been that they said he were just "hyper-active". That terminoligy is out-dated. We now have a way to control it. Honestly, with age, it seems to dissipate slowly, but does not entirely go away. So medication can be reduced as age progresses, BUT DO NOT STOP med's without doctors approval....they really know better. I tried to stop, and found out that they really know better.\n\nAs far as what causes it, looks like it's hereditary.no known cause. At least it's controllable.
816614
Deane,\n\nI am single and have systemic lupus. It causes pain and fatigue that come and go, and you never know when you just can't stand or walk anymore. I lost both my jobs because of it. It is hard when people ask what "you do." I now answer, I am a human "being" not a human "doing." \n\nWhen our identity is wrapped up in what we do, and then what we do is taken away there is a period of grieving. All the stages of grieving for a dead person come into play, but we are here and grieving for who we used to be. Truth is, we are the same person. And everyone is going to face physical detioration and death. We just got to do it a little earlier. So be angry and sad and hopeless. Then try changing how you think. I am not saying be a Polyanna and say, "OOOOOOOOOO I am so glad I have this and I don't have leprosy!" That is just silly. But begin to focus on what you can still do.\n\nAs far as relationships go, I believe it is best to be upfront about your physical limitations. And as you begin to enjoy your own company again, others will too. Please consider looking for a support group. If you go to one and it does not work for you, go to another one. Not all groups are created equal. \n\nYou have a life, you just have to claim it. After all the grieving and wallowing and cursing and swearing that we do, and we all do it, there is a time to transform our lives. Cure is absence of disease or deformity. Healing is being at peace with yourself right where you are. You may not get cured, but you can heal. Good luck to you.
682542
Here's an interesting link http://www.rochester.edu/pr/Review/V59N3/feature2.html\n\nYour mind definitely has the power to heal or to destroy you. I speak from experience. I could heal all the auto immune problems I was having until I integrated my health care with healing my mind.
49805
I have MS, for 8 years now.\nIt's a real pain in the a.., as you already know!\nHave problems with my legs (damn, they dont listen to me like they used to..hehe) and I believe you know all about those mood swings, that can occur every now and then :)))\nOther than that, I'm one pretty optimistic gal :)