My dad and my nephew both have Beckers and my sister and I were both given a DNA test to see if we were carriers. I was told at 13 years old that I was a Manifesting Carrier. I have always have weakness in my legs, and have struggled the older I get. Now that I am 35, I am seeing a physio about Drop Foot. I am really struggling with pain and sleeping due to it, and walking around is hard work at the moment. I am also being explored as I pass out and have seizures, which I am being told are probably to do with something called Vasovagal Syncope. I have been discharged from the Cardiologist and told to sit or lay down if I feel I am about to pass out or have a seizure. In theory this is good advice, but not always easy as I have to go shopping and continue to live life too.
I guess I am just at a stand still about where I can go for help. It’s just my partner and I and we are really struggling. I was told by the Neurologist that there is no such thing as a Manifesting Carrier of Beckers. Two specialists have told me that ladies do not get symptoms, so I am not sure on next moves. Has anyone had a similar experience and what did you do to move forward? My walking is getting worse and more painful and I just want to cry because it feels like nobody care.
Hello and welcome. This is indeed a very difficult situation for you, and one that seems under explored. I too was told I was a carrier (with FHSD), yet now, a few decades later I have body wide pain, difficulty breathing and walking, and many of the other usual symptoms. The point of this description is to say that you need to, somehow, get a proper diagnosis as there seems to be so much uncertainly here.Joe’s comments above are absolutely correct, and you must push for them until you get what you need. In the meantime you should visit a physiotherapist, preferably a specialist in neuro muscular conditions , and tey can help you deal with the difficulties you are describing. Meantime, try looking up support groups like https://en-gb.facebook.com/BeckerMuscularDystrophyAwarenessWeek/, and remember you are not alone. Many on the forum can help you get through this, and indeed the wonderful people at MDUK have lots of support people who can give you further advice.
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Do please keep us informed as to progress.