Very anxious

[srijana63]

Hello , my name is Srijana Sharma , 27 years female originally from Nepal. My half brother (from my mom's side ) has be diagnosed with ALS in 2013 . He is 43 years old now. My mother is 67 years old and she does not have ALS nor anyone in her family does . Neither of her parents have/had ALS . Her father died after 85 or 87 . Her mom is 87 and still alive. Non of my mom 10 siblings or her first cousins have ALS until date . She tells me her maternal grandparents died because of different reasons but don't really remember about her paternal grandfather as she never got to see him . Non of my cousins from my mom's side have ALS until date . We are not sure if my brothers ALS is SALS or FALS . As much I remember , his father side has no history of ALS either .I live in united states and he lives is in Nepal . As the health care is not very advance back home , his doctors are not sure about which one it it . His doctors said it could be FALS because it can skip generations .Doctors also mentioned that most of the FALS is from mothers side. Genetic testing almost impossible to afford in Nepal .We are living in a fear everyday . My mom holds herself responsible for my brother's ALS . I am very anxious and losing my sleep over it . I just got married and now I have to live with the fear everyday . I am afraid to have kids . We are not able to get his gene tested to see whose side he got it from because there is no evidence of ALS in family 3 generation of family history . Few months ago I was diagnosed with Lymph TB and at that time I had a feeling of pinched nerve over my my left shoulder . It was really painful . My whole left hand was aching . I am in a TB medication for 3 months now but the pain is still there . My nurse is this is pretty unusual because in three months period it should have been gone since lymph nodes have shrunk. I have been having this weird feeling in cheeks for few months now . I don't know if its twitching but it just feels weird . I haven't felt any significant switching in my hand or legs . My left hand is still week and it aches too . I don't know if these are symptoms of ALS but its killing me right now . I can't live in this fear everyday . Its just too hard . Please help me . What are the chances that I might have FALS ? Does my bother has to get genetic testing done ? How likely is my mom to pass the FLAS to us ? She is 67 and she has no symptoms what so ever .

 

[Nikki J]

Hi. Sorry about your brother
Your chances of having ALS with one relative are about the same as a person with no relatives with ALS. Most ALS is sporadic. It is NOT true that any of the major causes of FALS are sex linked and go in the maternal line and if the family is longlived as yours is it is not going to be skipping generations. My family story is pretty typical. My mom was one of 5 children 4 of them died from our genetic defect. My sister and I ( my mom's only children) both have it. One of my cousins has the defect but is not sick yet. I belong to a FALS group. My story is typical. There are people who have traced back a number of generations and they are not reporting skipped generations.
Tell your mom not to feel guilty. SALS is like being hit by a truck horrible but random. Do not let this fear ruin your life

 

[srijana63]

thank for the quick response . Are there any chances that my might mom has it? Both of her parents were healthy. She is 67 now . Her mom is still alive . Her father died at the age of 87.

 

[Nikki J]

The chance is infinitesimal. Really. Not worth worrying about. Your brother's ALS is tragic but truly do not worry for your mom or yourself

 

[srijana63]

Thank you for the response . One last question , sorry if I am bothering you . Did your mom's parents or grandparents had FALS ? How did she inherited the disease ?

 

[srijana63]

Was there anyone in the family prior your mom and her sisters who had the disease ? It seems like your family had skipped the generation too and it came down to your and her siblings .

 

[Nikki J]

It came from my grandfather

 

[srijana63]

oh , thanks for the response . It helped a lot . Now my mind is at ease now . I am by brother's half sister and since my mom's family history is clear , I probably won't inherit it . I really appreciate your help .