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  • Dystonia

    Dystonia

    Dystonia is a term that refers to a range of movement disorders that can affect the body, forcing it into awkward postures or positions. Read more →

    I repeatedly suffer from some violent tremors/shaking mainly affecting my arms and hands but also my legs and facial muscles to which I couldn't control the muscles or movements. When seeing my Doctor she said that the shaking was characteristic of Parkinson's but that it had come on too quickly, she (eventually) managed to get blood from me and the tests all came back clear. As I already have fibromyalgia and now M.E the Doctor has just put it down to the M.E, but I'm not so sure. Could it be parkinson's disease? How do they test for this?





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    What does this disease actually look like , my penis bends upwards and is a strange colour could this be any other disease?





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    I have been diagnosed with lymes disease.I knew i had it 5 months ago as symptoms started and found out my aunt had it and i was staying in that area.Gp fobbed me off with depression tabs for 5months whilst i got worse.Mum took me private hospital and i finally have it on paper.The lymes disease is in my CNS and the private hospital want me on IV.I dont have the money my mum just paid two thousand pounds for all the testing.Gp not treating me says i dont have lymes i have the paper in black and white from the best tick born disease lab in the world what do i do?? I couldnt even walk 6 weeks ago the antibiotics are deffo doing something but speech got wors and memory and tingling.But Gp refuses to help me.Im on my last box of doxy what do i do?? Whats so wrong with lymes disease?? Why is everyone pretending it doesn't exist?? makes me sick....





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    I was bitten by a tick in Kruger National Park in June 2007. I became ill on my return and have spent years with various ailments and had the diagnosis M.E/CFS. This has left me as an active person, living a life that revolves around fatigue...the odd good day...headaches,joint and stabbing pains and a constant feeling of doom that i may be like this for many more years. My Consultant Psychiatrist...i have BiPolar actually said that he reckoned my symptoms were Psychosomatic and i should be aware of the power of the mind! After reading an article in the Daily Mail regarding Lymes and the stream of comments from people who have been misdiagnosed and left with no hope, a couple of them who said they had been treated or family had been treated years later and had felt a marked improvement, i went to see my GP. She is now researching my options and i finally see a small light at the end of the tunnel. Don't give up...keep kicking at those doors to get the treatment you deserve.

    I wake myself up screaming, thinking there is someone standing by my bed, in the hallway... last night the person was standing ON my bed. This has been happening quite often now in the last few months. My mom has REM disease and screams and yells and talks constantly in her sleep. I'm starting to wonder if I am getting REM disease too?





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    i am 17 years old and classed as morbidly obese , i weigh 16 stone but suffer with friebergs disease in my feet , ive been trying to loose weight for ages , but cant do much physical exercise due to the friebergs disease in my feet what else can i do?





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    I am a 26 yr old girl and about two months ago I noticed 8 small black spots on my vulva just underneath my clitoris and on my inner lips. I have has this checked by my GP and I have had a biopsy - the biopsy came back as ok nothing cancerous however my GP has diagnosed it as spongeotic disease. I wondered if you had anymore information on this disease as i have searched and search and found nothing? I am also wondering if there is any treatments available as my GP said there is nothing more they can do. Please help as this is really worrying me and really effecting my confidence as a women.





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    Hi...! I'm 24 years old guy. I'm suffering from a disease Ankylosing Spondylitis. Which cause stiffness in backbone and calcium stick on all back bone. I have pain almost many parts of body. But my sex appeal is normal like a healthy man and sperm color also normal. So please tell me is that disease will effect on my sex life with my wife like it may cause problem related to baby or pregnancy of my wife?





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    Hi I was diagnosed with AS about 2 years ago and have found things very difficult to deal with and I had the same question as you, so I asked my GP. The answer he gave me is that if you are taking an anti-TNF then your wife will be unable to conceive, I was also taking Methotrexate and that also will will prevent your wife to conceive, it will actually cause a miscarriage. If you are taking any of these types of medication the you should read the leaflets carefully and fully. I hope I have been of some help.

    Hi, I have AS also. It should not affect your sex life, provided that having sex is not too painful. Exercise as much as you can - rotations, stretches, light physical - as these will all help you feel more flexible. Determine what time of day you have least pain, and try for that time. Find a position that works for you and her eg if your back and hips are stiff, missionary may be tricky so put a pillow under her bum to raise her, try from side of bed standing, etc. As far as passing AS to your child, there is a small chance as it is genetically related but not guaranteed - do a google search for more. No connection to likelihood of pregnancy from AS alone. Stay positive, my AS improved with age, and weekly Physio for stretching along with hydrotherapy really worked - stopped taking NSAIDS as a result. If you are too stiff to exercise, speak to your GP about medication choices, including the likes of Embryl, as these are enablers to doing exercise which is the main preventative to your condition deteriorating. good luck!

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    How do I find a periodontist and how much do they cost? I am in my mid thirties and was diagnosed with periodontal disease 10 years ago, As well as the constant fear of waking up with no teeth, the movement of my teeth and receeding gums has badly affected my confidence and the pain is getting unbearable. My Mother has advanced Emphysema and a heart condition, I have read that periodontal disease could lead to both of these conditions, is this true? Whenever I ask my GP I am never given a clear answer.





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    Your regular NHS dentist can recommend a periodontist. Failing that, you can google one in your area. To debride your teeth (remove plaque from below the gum line) cost me £375 for each side of my mouth. It is hoped this will strengthen my teeth so they will last a little longer. However, my mother has just received the same treatment for free on the NHS!

    maybe try your local dental school. students need to do perio treatment in 3rd, 4th and 5th year. They are really well supervised and monitored and you wil get the treatment for free! good luck!

    This is a general question for the show...IBD is very common yet highly embarrassing as a most problems regarding going to the toilet. Awareness is important also people with the disease meed to be aware of the support available. Having being in the position of literally soiling myself without warning you do not know what to do Its embarrassing especially the fact I was in the military at the time. I was then misdiagnosed with IBS not forgetting these are completely different issues. As well as all the fantastic topics covered this disease Obviously covers Chrons and UC, links to cancer and PSC. I am one of the few lucky ones who has had surgery and reversal and recovered very well although I do have PSC i consider myself very very lucky, I just think people should be more aware of IBD and other invisible diseases.





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    im 14 and my penis is a bit curved i don't know if its Peyronie's Disease.. is it normal for your penis to be a bit curved and not have Peyronie's Disease plz tell me.





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    If your penis is just slightly curved this is perfectly normal, as some of the pictures on the penis gallery show! However if you are still worried, or if it is causing you any pain what-so-ever, go to your GP or local "family planning" clinic. Generally if the penis can be slightly "made" to point straight with your hand while erect, it is natural - as are some slightly curved penises. Also do remember a curved penis does not always require treatment regardless of its nature of it is simple slightly bent!

    Daniel, as you will hear many times from many people who visit this site, curvature of the penis is perfectly normal. My own curves slightly to the right and up!

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    Hi there im 53years old iv got Parkinson Disease along with Osteoarthritis Arthritis and a skin complaint... Iv been Told that i could not have surgery done on my knee due to my illness (Parkinson) im wondering if i still could go through with it by taking a 50/50 chance of losing my mobility??





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    Hello,hope things will get better. I am also 53 yrs young now this is my 13year with this Parkinson. I also have had 3 back surgery's 2 fusion on my l-1 l-2 l-3 &s1 and possible for l2 fusion in future. With my Parkinson dec1 2011 I had a deep brain stimulation done on me at UMC hospital in Colombia mo. Taking very little medicine since surgery.S o Charlie So keep your faith & head up .

    Sorry posted surgery date of 2011,the correct date is Dec1 2010

    Thanks, Jan, for the kind words. My father's tremors are like my febrile seizures were when I was a small child. They're super horrible, but VERY RARELY happen when you're with a doctor. So, sadly, his VA doctor at the hospital doesn't believe him. :/ I'm really sorry to hear about your e.t. When were you diagnosed if you don't mind me asking? I know if you've just been diagnosed, you have a better chance of trying to exercise and do possible treatments to try to lessen the pain and suffering. Not making it sound any less worse or the same, but, the symptoms and ways to relieve them kind of make me think of arthritis, which flares up at the worst times! My great uncle has Parkinson's Disease. It's so sad to see him try to do anything. :( Maybe the new "cure" they found for Parkinson's that Michael J. Fox used may help with this? I know they put a type of pacemaker in his brain and his shaking just stopped. Please keep me updated! :)

    Thank you and Well done at last recognition for parkinson's. So few people have heard of it. My dad is a sufferer and when you mention it to people you get a vague oh. Thank you for bringing it to our screens. Support Parkinson's week-19-25 April 2010!





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    My stools are blackish and a round shape,but I take medication for Parkinson's Disease and had assumed it was as a result of that. I 'go' regularly and do not have any symptoms of constipation except a bit of wind.Should I be concerned?





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    Hello,hope things will get better. I am also 53 yrs young now this is my 13year with this Parkinson. I also have had 3 back surgery's 2 fusion on my l-1 l-2 l-3 &s1 and possible for l2 fusion in future. With my Parkinson dec1 2011 I had a deep brain stimulation done on me at UMC hospital in Colombia mo. Taking very little medicine since surgery.S o Charlie So keep your faith & head up .

    I was diagnosed with Parkinson's Disease 8 months ago at the age of 52. Medication has helped a lot alongside a good attitude to life. I can think of a lot worse conditions to have and considering children suffering with cancer make one feel like at least I got to this age before I started with my condition. If you have been diagnosed recently trust me....it's not the end of the world! There are many medications to help your condition but you have also to help yourself by not being in denial and also not giving in to self-pity.





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    Hi my name is Donald and I suffer from Cervical Dystonia since dx in 1999.I have been treated with just about every medication used for Dystonia for almost 15 years with the exception of one DBS. I am no longer on Botox injections because I had them for the first 6 years and became over time immune.I am writing to you as one of the many who suffer though the never ending pain of Cervical Dystonia.I also have onset Parkinson's Disease to add more pain and difficulty to my life.I will be 59 this coming March and have not been able to work for 13 years.There need to be a greater voice or speaker to the public awareness of Dystonia.





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    I was frightened by passing, about once per week, what looked like black flaky powder around my stools. The time of the week coincided with the day I took Fosamax for osteoporosis. I reported this to the doctor who seemed puzzled and told me to stop the Fosamax while she organised a test on my stools. The black powder disappeared after stopping the Fosamax, except for the first miss, when it appeared two days afterwards. From then forward, nothing. The faeces test was negative for blood. Can I go back to Fosamax as it's only once a week and I'm afraid of forgetting to take the (every day) alternative. I take a lot of other medication because I have Parkinson's disease.





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    Hi, I have just watched this weeks embarrasing illnesses. You had a guy on who's scrotums have blood blisters on them. I suffer from a rare disease called fabrys disease, this is a very rare , life threatening disease which many doctors don't know about. One of the symptoms of this disease I'd blood blisters on the pubic area. Although this guy probably has not got this I would hate him not to be tested or looked into his problem deeper, he may have this disease and be un aware .





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    Hi my son is 15 years old and his hands shake a lot people are telling me that it could be parkinson I don't want to believe that can it be something else





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    Hi Maria the only answer I can give you is that your son must see a neurologist .he/she will do tests on him ..it's probably essential tremors .as a sufferer.it won't be easy as iv tried lots of different medication an none have helped ,I have good an bad days.my boys hands shake too but that's all an he's an electrician .so it could be just nerves good luck to him though x

    I have had Parkinson's for approx 10years. the PDS have a very good forum on their web site. www.parkinsons.org.uk





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    Gum disease aka periodontal disease is linked with heart disease, so it is important to get it under control. Good oral hygiene (brushing and flossing) along with frequent visits to the dentist for dental cleanings will keep the disease in check. <a href="http://www.bcdentalcare.ca/EmergencyServices/tabid/473/Default.aspx">Emergency Dental</a>





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    I was diagnosed with cervical dystonia a couple of years ago after a car accident. The GP originally thought it might be Parkinson's and I was was sent to a neurologist who diagnosed CD and prescribed Botox injections. The Botox injections work very well for me, better than the muscle relaxants but I need them every 3 months. In addition to involuntary neck movements and pain I suffered from incredible fatigue and anxiety. The symptoms are worsened by stress. The Botox has helped with those symptoms as well. It takes a great deal of skill to administer Botox, ensure you are getting treatment from a neurologist who is very experienced with Botox treatments. Insurance companies are reluctant to pay at first, you must be persistent. Hopefully researchers will find a cure for this disease, from what I understand it's not particularly well understood. Good luck.





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    I too suffer with this disease now for 5 yrs. I have tried everything and nothing works. I have currently started stelara and it only works for a month and I break out again. I am thankful for the one month that I am not in pain,but it seems like it just comes right back.It is the most horrendous disease I have ever seen. Relentless and agonizing. What puzzles me is if anyone is doing any research on the disease.It just seems to me that no one really cares.I realize that studies are expensive but just because 80% of the population suffers from the glutate type and only 3% from PPPP should not be a reason to not research this disease. anyone have a clue what is being done I would love to know





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    crohn's disease is a really hard thing to live with and it's important that people are educated on the disease. Click here for more info: http://www.patient.co.uk/health/crohns-disease-leaflet





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    About 4 months ago I developed eczema , I am 68 years old and have never before had any skin Problem . My husband had been diagnosed with Parkinson's And my doctor thinks the stress has brought on The eczema Can you help





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    Hi my name is Joanne and I'm 34 and have recently been diagnosed with hydradenitis supurativa after nearly 20 years of suffering with this disease. I know that you have featured this disease before and I know that there is a man on next weeks episode with a severe case of this disease. Although mine is not so severe yet, i know that as its a progressive disease that chances are it will become more severe. I have spoken to numerous GP's about advice but they don't seem to know anything at all. We HS sufferers all seem to have this problem. Nobody can help us. We have to rely on HS websites to find out how to treat ourselves. I asked if I could get botox in my armpits to help with the HS and the hyper hidrosis which accompanies this disease and she said I would only be offered this if I hsd been diagnosed with hyper hydrosis by itself which I did about 10 years ago, but she just dismisses my disorders as folliclitis. I feel like I'm hitting my head against a brick wall. Can you offer me any advice? you are my last hope to be able to get any help at all.





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    i have had hs now for about 10 yrs although i dont suffer with hyper hidrosis infact i rarely sweat at all. although HS has been recognised for around 200 yrs nothing seems to be known about it. I was researching it on the internet to help my mum understand it more and on a USA doctors site (sorry i dont remember with one) it barely mentioned that some studies showed vitamin A could help. hey i tried everything and vit A good for you what harm i thought.Well what can i say it worked for me 1 a day for about 2 weeks before i noted change so try it stick with . for me it didnt get rid of it but it eased the systoms remarkably i no longer get them in my armpits at all but i was mainly affected in groin even here the improvement is so good i can sit comfortably for the first time and although i still get flare ups they are no where near as bad.Stress can make it worse to learn relaxation technics. i found this helpfull in my case too. i hope i have given you some hope and wish you well.

    I have suffered from this for years before a doctor gave me a diagnosis, it does get better with age I am now nearly 38 and have suffered with this since I was 21. I have take Lymacyclene for a number of years and now I only get one or two flare ups a month. It is painfull and in my opinion it should be on the list as a disability as I have spent many a day off work over the years due to absecess on my thighs, groin and arm pits. Thanks to this programme more people are aware of this illness, it is horrible and I wouldn't wish it on anyone.

    The link between gum disease and lung disease is usually only a problem if there is already a lung disease problem. If you feel you are not getting the treatment you need from a general dentist then a visit to a periodontal specialist is the next step. Good cleaning, stopping smoking and eating right is the best start.

    Having endured Chronic Lyme Disease now called "Late Lyme Disease" for over 35 years and been treated for it since 2006 when it was eventually diagnosed, basically by accident. I will be more than happy to do anything to help the show to advise or deal with this dreadful disease. I am aware that there are a number of people who claim to have been bitten by ticks, who have clearly done research on the disease and taken advantage to gain sympathy, some even letting people raise funds to send them to the U.S. for some form of treatment, when in effect I've been positive and dealt with it with the help of a great Consultant at Blackpool Victoria Hospital since 2006.





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    Hi my name is Ginger, I've been suffering with this skin disease for 10 years. Like all of you I been taking a lot of different types of antibiotics. I'm soon to be going on my fourth surgery, nothing has help me. it is starting to grow in new areas of my body, This skin disease Has really took me down And destroyed my marriage, my husband left me because of this disease. sometimes i find myself asking god to just take me because i dont want to live in this sick body anymore its so painfull I'm really fed up with this there has to... be a cure out there somewhere.





    This will be published. Surnames, nicknames or usernames are not allowed


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    Stop eating pork and drinking soda...it may help.

    I know how you feel. I have had HS since I was 15 yo. I am 40 now. I have had a few surgeries, but they still come out in different spots and even the surgery sites opened up again. I am really bad right now with many open wounds under both arms and under both breasts and between my breasts. Also behind my neck right next to where i had the entire back of my neck removed and let to heal on its own. It was done by a general surgeon. i have been in contact with a Plastic surgeon who says the previous surgeon may not have gone deep enough and he knows methods that work better. He has experience with HS patients. In the mean time i just bandage the open wounds daily for about 2 years now and I get new ones on my buttocks and neck area as well. The pain is to the point that i cant move when i have a flare up until it drains of course. My only regimen when i have an inflamed one is taking ibupfren,and using drawing salve. Prids is my favorite. Antibiotics dont help. Hopefully I can get the surgery soon. Good luck to all.

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