I've just been diagnosed with this, but there is very little info on it- I just wonder if any one had any advice, experiences? I've looked at most of the internet sites out there, and while interesting, are not v comprehensive.\n\nThanks!
205884
HI. My son was diagnosed with MODY 3.  You are right there is not a lot of comprehensive information.  What i can tell you is what my late husband experienced, but it's not pleasant.  My son is currenly 13 years old, I don't expect him to show symptoms until he is 16, but we keep him checked.  My husband was diagnosed with diabetes at the age of 24, he had it unbeknownst to him since he was about 17, he did not do the greatest job taking care of it, he had multiple eye surgerys and was diagnosed with kidney failure at the age of 31.  He was on dialysis for 3 years and died on his 35th birthday. It is a very tragic tale, and I am going to do everything I can to keep my son from going that same route.  My late husband was not a drinker, not a smoker and not over weight, but his diabetes was very progressive and aggressive. All I ask is that you PLEASE take this very seriously and take care of yourself.  If you want to chat more on this..I'd love to hear from you.
644
Holy christmas (literally!)... the last poster, be careful.\n\nI was diagnosed in 1999.  I didn't start taking medications until 2004 (had a bit of denial there)...\nI got a flare-up that forced me to think harder about my future (and a great fiance to boot!).\n\nA lot of people go on the interferons, and Glatiramer acetate, which is what I'm on.  When I decided what to go on, I thought about what I'd have to do for it.  I was a bit worried about giving myself a shot, and I figured that I would need to have the least intrusive method of medication delivery... so I decided subcutaneous (just under the skin).  That cut down the list of interferons... \n\nThen I thought about side effects, a lot of the interferons have flu like symptoms.  When I started the meds, I was feeling weak, pins and needly, and limpy.  I said, do I want to have a cold on top of that.  No siree.\n\nI mean, you really have to talk to your NEURO, and what (s)he recommends.  It just so happened that the first NEURO in 1999, recommended Avonex as he was drinking out of an Avonex branded mug (no foolin!).  That is what turned me off from the med idea in the first place.  My SECOND neuro, he asked me my concerns, and we decided on Copaxone.  Yes, it's daily, but it's under the skin, and it just has local reactions for me as a side effect.\n\nI WAS PETRIFIED of giving myself these shots.  Many of the companies (my drugs, included) have autojectors, so you don't even have to see the needle.  Copaxone (or my doctor, I can't remember, it was so long ago!)... required me to have a home care nurse there the first time to show me how to administer the drugs.  I gave it to myself without hesitation the first time!  I am a little wary of someone else doing it (though she had recommended that my fiance learn how, too).\n\nResult?  Well, there's not much to say!  (that's a good thing)... my original symptoms had faded, and I don't know if that was the copaxone or what.  I've been on it since 2/2004 (wow!  going on 2 years soon!), and I have NO NEW LESIONS!  boy, that's more exciting than I thought it was going to be.\n\nNow, your milage WILL vary, and unlike my first time experience, you will LIKELY have to go through a few drugs to find one you like.\n\nGood luck to you!
333910
I think you definitely have a problem here. I saw a special on TV, I think it was on intervention where a girl did this too. I can't remember that name of the disease but she definitely had a chemical imbalance. I really think you should see a doctor and don't worry....your not the only one!!!
653032
i personally don't have it, but my best friend does....he is applying for disability, but i don't know if it is related to that...my best advice is to use "distraction" music ((he listens to music as much as possible at a moderately low level, y'know just loud enough to be heard personally)) that seems to keep him from becoming too annoyed...other than that he recommends a doctor visit, some other afflictions cause the same symptoms
38979
I am so sorry to hear of your father's diagnosis. All I can think of would be to possibly look into clinical trials where most if not all of the costs for treatment are covered. I wish you and your family well.....
181428
I haven't read all of this but it may be of some help check it out its worth a try! Hope it helps you good luck!
442789
I do not have it, but I have a condition that can lead to it.\n\nI hope your mom has been diagnosed early... for her, and for you and the rest of your family.  \n\nLook it up on the net.  Web MD whatever, Google it, Wikipedia.  I dont want to tell you anything, you need to read it for yourself *and this d*ck telling you your mom is going to die... GO TO HELL MAN! what a jerk*\n\nI dont know how old you are.. but regardless.  Read what you can, understand as much as you can absorb... and love your mom and be a good girl :) \n\nGood luck to your family, I wish you the best.
26980
I don't have any great advice unfortunately but please keep pursuing it. If I were you I would definetly report it to his medical association. \n\nI'm really sorry you are going through this. Hope someone comes along with a good answer for you.
106807
I have heard of this...but I would recommend seeing your doc...perhaps you need a new medicine.
620126
This is definitely a question that you should ask you prescribing doctor.  He/she went to school for many years in order to diagnose and help you.  Taking the word of other fellow sufferers will not help you since this illness is so nonspecific.  Good question, see your doc and good luck.
76589
Hi. I have RP also. I am 35 years old and was diagnosed when I was 22. I had always been nearsighted and struggled with imperfect vision, so when I got the diagnosis - it did not really have an immediate impact on me. Now, however, I am really struggling in so many ways. Of course, there is the obvious - not being able to drive anymore - but there are many other things that have changed for me as well. I feel isolated both physically and emotionally from the rest of the world and I find that it takes so much more effort and determination to do just the normal things. I suffer socially in most situations because I bump into things and people, I trip over people's children - hurting them,  neglect to shake someones hand when it is held out for me (because I can't see it), and cannot often even follow the most mundane activities because visual cues usually guide most activities. I am exhausted from having to explainn all the time, and even though I don't want special attention - I worry that people see me as demanding it if I try to explain too much. As a result, I no longer feel like I am a part of the normal world and I often choose to remove myself from social situations. It is just exhausting, and most days, I don't have the strength to deal with it.\n\nAlso related to the issue of feeling isolated is the way people relate to you once they know you can't see much in front of your nose. I think that although most people are very well intentioned, they cannot help but be over solicitous. They start treating you differently - like something fragile, broken, or they just act afraid to say or do the wrong thing. Sometimes I get the impression that some people are uncomfortable just to even be near me. Maybe they are afraid it is contagious. Another oddity I have found is that I have often felt the pressure to be a spokesperson for blind people - needing to explain to people that, yes, blind people can actually have regular jobs, be married, have children etc. \n\nThose close to me have reacted in differing ways. My husband is very loving and supportive but totally in denial and cannot seem to remember to stop trying to hand me things - holding them out for me to grab. Drives me nuts. To my kids, I am just mom, but I think it frightens them to see me become so dependent. They forget to warn me of stairs, doorways, cars, you name it when we are out together in unfamiliar places. As a result, I am always falling, crashing into things and hurting myself.  Onlookers just think I must be mentally deficient or something. I have a sister in law who won't acknowledge my eye problem. She told me "I don't want to hear about it - there must be something you can do!" She thinks talking about it means I am whining about it. Yet another relative told me that I needed more faith in God to be cured and because I am still losing vision, my faith is not strong enough. Still other relatives open every conversation with "How are your eyes?" as if there is no more to me than my eye problem. I feel like saying, "Fine, how are your bowels?"\n\nI still work, but only marginally. Because we live in a small town, I am pretty much confined to working from home.  I do some contracting work for a news monitoring company but it is very low paying work. In the past, I was a professional with a college degree - now I am barely able to make $400 per month. This is bad for the self esteem.\n\nThe state I live in has special services for people who are visually impaired. They'll set you up with adaptive aids and teach you how to put raised stickers on your stove so you don't overheat the mashed potatoes, but there is nothing anywhere that can teach you how to be a blind person. From A-Z, I need to relearn absolutely everything and there is no resource for that. \n\nAs far as how I am doing - I am angry, frustrated and feeling utterly isolated. There are days when I feel completely useless and there ar
531472
Some drugs claim to slow the progess of the disease but this has rarely been the case in my experiences with this disease. The best is to look for a local support group. Herbally, things like Ginkgo Biloba are found to improve blood flow to the brain. I  believe in alternative therapies as there is little else that can help. If caught early enough, the results can be very pleasing. I am a homoeopath but my mother refused treatment when she was lucid enough to decide. It's not ethical to give it with refusal. Funnily enough now, she has agreed to go to a colleague of mine so I'm hoping for some improvements but I feel it's too late realistically now.
67235
I tend to agree with the above person. Although there seems to be quite a bit of info on the internet, it's often better to have it explained to you by an expert. There are different treatment modalities, that I won't go into here. Best to speak in depth with your childs doctor. Best of wishes.\n\nHave you discussed surgical options?
573513
Hi.\n\nWebMD has an excellent Q&A on this along with contact info to an expert. Check out:\n\nhttp://www.webmd.com/content/article/123/115100.htm\n\nBest! :-)
85876
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
278861
It really depends what the doctor said you have.  You should call the doctor, find out what you were diagnosed, and spend some time researching it on sites like webmd.  Good luck to you.
489004
Here is the Yahoo Groups link for people with NF. Hope it helps. Good Luck.\nhttp://groups.yahoo.com/search?query=Neurofibromatosis