My mother, grandmother and two uncles have passed away from MND. I don't know if they ever had any genetic testing done but I'm assuming it's a genetic form of MND. I'm plagued by my 50% chance of getting MND and whether I should ever have children as I don't even know what gene to test for. It keeps me awake at night worrying if I will eventually get MND and I hate living my life in fear or a disease I can't 100% test for.
Hello Tina, sorry to hear about your family history of MND that's very unfortunate. What you need to do is get a referral to a neuromuscular specialist not a neurologist but a neuromuscular specialist. They can do blood tests to see if you carry the gene that your mother and grandmother carried. Also look up this site ALS forums you will get a lot of great useful information there along with very informative people that know als very well. I hope you find answers soon.
Tina,
I can only imagine how scary this must be. I am so sorry for your loss. While im curious to hear more I have found that treating symptoms that are not already there can help prevent as well. Not in all cases. Good news is that Testing can be done. I myslef have had a few of them done recently. There is a list of the tests recommended in the order in which to receive them at mndassociation.org. It is a good place to start. I tried to avoid the EMG as per the description it is not a fun test. I won't lie to you, it is uncomfortable to say the least. IF you are not symptomatic at the time of testing. I really feel how this is affecting your sleep. Might I ask how old you are? Although at any age after having lost family members to this disease it would be frightening. Are you showing symptoms now? If not it is GREAT that you are starting to be proactive NOW! You are going to be alright. Remember the glass is half full. Luckily there is room in the other half of the glass to fill it up with what you want! I am truly sorry for your loss.
Oi Tina, minha avó e minha mãe tiveram problemas de nervos. Minha mãe foi diagnosticada com T quatro anos antes de morrer. Agora eu tenho contrações musculares, etc., e atrofia muscular. Meu hospital local em Hull está me encaminhando para Londres para ver um professor e tentar me entender.
Oi Tina
Minha avó tinha problemas de nervos e minha mãe foi diagnosticada com TM 4 anos antes de ela morrer 2 anos atrás. Eu tenho espasmos musculares, principalmente na perna direita, mas agora está por todo o meu corpo. O médico geral descartou algumas coisas ruins, como etc, mas eles não conseguem me entender. Eles estão me encaminhando para ver a Mary Rilet em Londres, ela é uma professora de Niro. Mencionei ao Hull sobre meu possível problema genético, mas eles não pareceram ouvir. Acho que vai se descobrir que eu tenho problemas genéticos. Vou te manter informada xx