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Undiagnosed Condition

Wainwright Message
14 Oct 2011, 10:50 AM

My daughter has been told that she has a genetic disease which has not been diagnosed. Approximately 5 years ago at 16 years old she began to get hand tremors, followed by walking and balance problems. She has been taking beta-blockers ever since and muscle relaxants to stop her getting cramps. Following MRI scans, lumber puncture and muscle and tissue tests they still have not been able to help her. They believe the white brain matter has atrophy which has affected her thoughts, memory, balance etc.. and she is now in a wheelchair and unable to work. Any views, ideas or help would be greatly appreciated.
katerad Message
2 Jul 2012, 02:52 PM

Hello, I'm Kate. I'm new to Rareshare. I'm 26 years old and I have some similar symptoms but not the same ailment. Its rough to realise your life has/will deteriorate at a much quicker and far more painful rate than most others in your life, I don't have alot of answers but I will share with you some things that have helped me. I get alot of cramps in my legs and back so I soak a towel big enough to cover the area in some hot water with 2 cap fulls of Eucalyptus oil, you can buy it at most supermarkets for faily cheap, leave it for a few mins and let the whole towel Absorb most of the solution, wring it out so not to burn the skin and wrap it around or drap over the area and leave for 10 mins or so. Its not a cure but it does give me some relief. I also do some very gentle stretching, I visited a physio and also went to a Pain Management Clinic and got them to teach me a few months worth of exercises. Im not sure with your loved one what is phsically possible but short walks are also helpful, Just the sun on your face is good for your mental state. A Psychiatrist once told me If you want to get depressed, lye down and do nothing" I walk everyday and it truely does help. Ive also tried Hydrotherapy, its great for the balance and also helps to do some gentle stretching in the water as your taking 90% of your body weight off. I also use heat packs alot during winter as the cold seems to wreak havoc with the pain and cramping. Gentle Massage is great too, If you have a look on youtube at Oncology Massage, teach yourself the Basic techniquics. I found that to be wonderful. Also recently In Australia, where I live, Botox has been found to STOP hand tremors. They are currently testing it with those who have parkinsons and they are having an amazing positive effects. I find that as a result of the medication Im taking, Tramadol and Dothep and other pain killers like morphine and ocxycontin,aswell as Muscle Relaxers, I take Norflex. im not able to focus for long periods of time and I also have noticed alot of confusion and memory loss I hope I was able to help and I will re-post if I stumble across anything else I will be sure to share. Stay strong,