Do you want to know?

[Atsugi]

Thanks, Tillie. I'll take it day by day.

 

[weavie]

There is no ALS in my mum's family history, so I just assumed she was a sporadic case and there was no chance I could get it.
Having read some of the posts here, I am now not so sure.
She was diagnosed aged 69, but had symptoms for 12 months before this.
Any thoughts would be appreciated as you guys seem to know so much about this.

 

[Nikki J]

Weavie I understand what you are saying. I can't tell you it never happens. It happened to Mike's wife. She was quite a bit younger than your mum is, young for SALS. Your mum although not old is more of the usual onset age.

90 percent of ALS is SALS of the 10 percent of FALS most of us knew it was in our families.

Please if no one on your mom's side had ALS or other neurodegenerative diseases try to put it out of your head especially if you know the family tree and people lived mostly normal lifespans. If there is a strong history of dementia especially ftd you might ask for a c9 test for your mum but even then you can't do anything that we know of to ward it off

ALS is rare, FALS is very rare, unsuspected FALS is very very rare

Try not to let it overshadow your life

 

[weavie]

Thank you Nikki.
You have put my mind at ease. I had wondered if the age of onset indicated it to be more likely sporadic, especially as there has been no one on mum's family tree with ALS. I was worried also for my girls, but I'll try to put it out of my head now.
I really appreciate your support at this difficult time.

 

[skipper66]

I know this is a different matter then ALS. But, in my family there is quite a bit of breast cancer. I thought about getting tested to see if I carried the gene. But, my mother's oncologist didn't think it was the best idea. He said if I tested positive for it that I would have more trouble getting insurance coverage. He said I should just be proactive and get regular screenings. He said "Why stress yourself out with what ifs?" Why live scared?
My brother, sister, and I don't want to know if my dad carries the gene. I especially don't worry about my kids or future grandkids having ALS. Why? Because, I believe in my whole heart that we are going to find a cure. Plus, a 50% chance isn't that horrible of odds. My dad always says "Live for today and don't waste time worrying about tomorrow."

 

[AKjo]

Gary is sporadic, but I would choose to NOT tell our kids if it were FALS. When Gary was first being tested for whatever (we didn't know ALS was a possibility) the doc said, "I don't see anything I can treat", but then offered to arrange for a 2nd opinion in another state. At that point I guess his symptoms were not so clear that she could make a definitive diagnosis. As we assumed the problem was being caused from his broken back a few years earlier, and they would certainly have some new miracle cure surgery, we were happy to make arrangements. Three months later when we finally made the trip and were given the diagnosis, we were very happy to have had those extra three months of ignorance. No, I wouldn't tell our kids... I would let them enjoy their youth. That decision is certainly a personal one though, and I can see reasons choosing otherwise.

 

[skipper66]

Yes, it's a very hard and personal decision to have to make for sure.

 

[Tx Daddy's Girl]

Mike, I'm sorry.

I have MS, Dad had ALS, my grandmother had alzheimers, another aunt has MS. My neuro believes bothALS and MS are auto immune and caused by a weird protein in our brains but not necessarily a gene if that makes sense. Had my dad not passed, she wanted to study my family because she thought something was going on with us.

I'm 35. Knowing what I know, I'm glad I have only 1 child. I also want to earn as much as I can for as long as I can and get as much life insurance as I can (difficult for those with MS). I would die if I passed MS or ALS on to my child. Knowing we might have this quirk I know I might possibly have to take care of my brother at some point (his wife is a piece of crap). I don't live my life differently per se but I travel a lot with my family, I don't live in the biggest house. I want to focus on making memories for her because I know my time could very well end like my fathers did. I think they deserve to know, but, only when they are at the age when they can process it. Typically, after college, before they meet "the one" and waaaay before kids. Not that it happens like that anymore but you get the idea.

 

[old dog]

My intention was to send a private message to Nikki J but, apparently, I am not allowed to do that. I am a participant in a study called "Histocompatible Human Pluripotent Cells." As I understand it, the object (or one of them) is to develop new stem cell lines from skin cells. I recently was asked to come back and donate a blood sample to see if my blood, which had not been exposed to environmental factors--sun, lotions, soaps, etc.--would yield the same results as the skin sample I had donated about two years ago. It was explained that a new testing technique had been developed for working with blood that had not previously existed.

During a discussion of my family history, I was told that my PLS came from my mother's side of the family. I double checked to make sure I had understood correctly. This information is in conflict with my family history. My father and grandfather both lost the use of their legs late in life, although neither was diagnosed with PLS or ALS. Neither ever saw a neurologist. Dementia is prevalent in my mother's family. I am wondering if I have two faulty genes. Can the researchers be sure that whatever genetic abnormality that may have caused my PLS came from my mother? The researchers cannot release any genetic information to me and will only inform my neuro if it might influence my treatment.

Another question--how does one contact David? One time when I opened the main page, there was something about a fund-raising effort to maintain the forum. I've never seen the message again. I would be glad to contribute something, although I am very limited financially with medical bills for PLS and cancer.

 

[Nikki J]

Hi old dog i don't know why you can't pm me. You have enough posts to pm. I will try to pm you in a minute. To donate ( thank you) there is a link at the very bottom of the page where you see all the forums. Also a link on the page before that the one where there are are options to join, to read the forum. It is in the left hand column.

Your research experience sounds interesting and frustrating. To tell you the information about your mum and then not explain how they arrived at it does not seem right. Do they have samples from anyone else in your family? If not then it sounds like they had 1 identified a defect that can only be passed from your mom ( I am sorry I am not sure are you male or female. If you are male they could tell that anything x linked was from your mom) 2 the defect they found is associated with dementia too so they were basing their statement on that. Or 3 they are wrong. If you are still able to contact the researchers I think i would try again to ask. They made the statement. They should explain it. They may not be able to tell you much but they started this issue but their original statement.

 

[dalvin]

Old dog, also at the top of each page there is a link to donate. Where it lists all the sub forums. Right at the end.

 

[Janie H]

So sorry Mike, I really don't know what I would do, my son says he would want to know but he is 35, not a teenager. God Bless!
Janie

 

[old dog]

Thanks, Nikki and Dalvin. Still can't figure out how to send a PM or even reply to one.

Regarding the study I'm involved in, the researchers seem to be excited, but I was told they can't give me any information. They wanted to test others in my family but only those who were my mother's direct descendants and preferably female. I am an only child (female) and have only one child--a son. They would like to test his blood, but he lives in Florida. If he comes to the west coast anytime in the next few months, we will contact the researchers to see if they are still interested.

I have an appointment at the ALS Clinic later this month and will ask my neuro if she has received any information about the study.

 

[Nikki J]

Do let us know what you find out. I am very intrigued as to how they are so sure this is from your mom. Obviously I am not a geneticist but if your dna is affected even if it is x linked how do they know it is from your mom. You got an x from your dad too! If your son can't go to them can he mail it in? I have mailed blood for genetic study twice. Maybe it needs special handling?
Funny you can't pm. If you click on my name do you see the dropdown with an option to send private message? Were you able to read my pm to you.

 

[dalvin]

Nikki, for some reason the send pm is not coming up under old dog's name.