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aksunshine

New member
Joined
Mar 7, 2008
Messages
1
Reason
Loved one DX
Diagnosis
02/2008
Country
US
State
MI
City
Holly
Hello,

My father-in-law was recently diagnosed with FTD/ALS. The FTD has been present yet unrecognized/misdiagnosed for quite some time, but now the ALS symptoms have also begun.

We are obviously very saddened at this diagnosis and want to learn all we can in order to be able to support my mother-in-law.

That said, we are also very concerned about the possibility of my husband developing this disease. His father's mother also had ALS (passed away in 1979) and I have just learned that her father was "in a wheelchair" and no one knows why. On top of that, his father's father suffered from some sort of unspecified dementia. Our earlier concern (before we found out about the ALS) was actually about the possibility of the dementia alone being hereditary.

Now I have just read that in cases of FALS the age of onset can be as young as in the 30s and 40s. My husband is 36, I am 33 and we have five young children (our two youngest are about to turn two.) We are very, very worried. I have read that only 10% of cases are FALS and it appears that our family is in that 10%. I have also read that there is one gene that has been identified but that gene mutation only accounts for a small percentage of the cases of familial ALS. Is there any research being done to figure out what accounts for these other cases? Are they all believed to be related to genes? Is it absolute that if you have a family member with ALS you have a fifty fifty shot at developing it yourself, or have any outside environmental/lifestyle factors been determined?

We have read the different symptoms and it is very hard not to panic. There are symptoms of early ALS that we can attribute to my husband, but then we read that these symptoms can also just be common to the general population. It seems to me that these symptom lists are easy fodder for hypochondria and anxiety. My husband had cramping in his hand, but then he's had that for a long time. It is just more frequent. It appears to me that his legs seem thinner, but then he has not had much time for bike riding since the twins were born. He had difficulty carrying our 26 pound son across a large museum parking lot a month ago, but does that mean anything? He used to rub my feet for long periods of time but now he says it makes his hands hurt. He complains when on the phone that it makes his arm tired. He fell on the stairs and broke the skin on his leg last week and he trips over things and seems startled by the sudden movements of other people, but then on the other hand he has always been on the clutzy side. For a month now he has been asking me if his speech sounds slurred, but then that could be just psychosomatic given that the slurred speech was one of the first problems we worried about with his father. Today he was worrying a bit because his tongue felt "thick" but then of course I thought he could just be dehydrated. It is all these little things that could be "nothing" that we have realized could be "something" and we aren't sure how concerned we should be or what we need to do about it.

I haven't discussed any of this with my mother in law because I do not want to upset her just yet. She just lost her other son to cancer two years ago last week and now this diagnosis for her husband. I am not sure if the neurologist discussed the possibility of a genetic risk and the responsibility of sharing that with family members yet...they live a couple of hundred miles away from us right now so it could be that she is waiting to discuss it in person. I am wondering if I should contact the neurologist who diagnosed my father in law and explain my concerns to him. From what I understand, he is a specialist in this illness and very well-informed and I think he may be interested in seeing my husband based on the familial link that we know exists.

If you want to tell me that I am paranoid and panicking unnecessarily based on what you all know about this disease already, that certainly would be fine by me! I'd rather like to hear that assessment over some of the possible alternatives....

I am a busy mom at home with all five children and run my own business from home and do not have a lot of time for locating articles beyond the most basic information. Even figuring out how to navigate forums and search through them is time that I don't really have. I haven't had much luck finding any in-depth information on genetics and ALS. If someone who has done this research before could send me some links to articles or at least point me in the right direction, I certainly would appreciate it.

Thank you!
 
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