I tested positive for HD a couple years ago. For insurance reasons, I have not openly discussed my condition with my doctor. I am in my early 30s and have been noticing some HD symptoms, but was wondering if extremely tense muscles (to the point of extreme pain and exhaustion) are also part of the disease? I know my next trip to the doctor will include a discussion about HD, but until then....any suggestions? Or any ideas on what types of meds I'll be put on for this?
Hi Abigail: I'm happy you contacted this forum to get more information on your status. There are so many obstacles with HD being public knowledge to doctors and it's understandable that you are nervous for that time to come where you have to share that information. But with that, there is great progress with research being done that offers a ton of hope for people with HD. As for your questions about your muscle tension it could be possible that HD is related to the tension. As you may know already, since its a genetic disease, the symptoms from family member to member can be similar at times. I recommend (if you haven't already) get an extensive history of how HD affects your family. Learn as much as you can so that when you approach your doctor about it you are prepared. Also, depending on where you live, there are affiliates and chapters associated with the Hutingtons Disease Society of America that offer great support for the HD community.Search their site www.hdsa.org to see if there is a location near you. There you will find ways to control this time in your life better by finding a medical team that specializes in HD. You may also find many opportunties for clinical trials and treatments that you may be elligible for. Keep in mind, clinical trials offer a variety of benefits. That may help with your payment of medications if needed. As for which medications you will be on, unfortunately there is really no true cure or many treatments yet but there is a medication that helps with the chorea. Your HD doctor will better assess where you stand and whether or not you need medications at this time. For now, it sounds like you are under a lot of stress from keeping it a secret from your medical doctor. A lot of challenges and stress can come from having HD and it is beneficial to take care of yourself because stress can exacerbate a lot of symptoms like tension and anxiety, depression and more muscle movements. To sum up everything, get as much information on HD as possible and see what HD resources are in your community if there are any. I am willing to help you with anything so please feel free to contact me. Good luck.
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