Family Links: How Many Persons In Your Extended Family Have ALS Or A Similar / Related Disease??

I am curious as to genetic links and links between similar diseases. My paternal grandfather died of ALS at 42 years old.

Have you heard of or experienced possible links between diseases like ALS, Rheumatoid Arthritis, MD, MS, Cystic Fibrosis, Genetic Disorders, Fibromyalgia, Neurological Disorders, Mental Disorders, Autism, or others?

Thank you in advance.

[This message has been edited by Anonymity (edited 02-05-2003).]

I see that people are viewing this post. Please, PLEASE respond.

Even a simple "yes" (you have noticed some possible genetic links) or "no" (you have not noticed any) would be helpful.

Thank you.

[This message has been edited by Anonymity (edited 01-22-2003).]

hi
my husband was dx in 2002,but had the symptoms a year proir,with bad body cramps and weakness in the hands,at this stage his both hands are affected,left leg wit drop foot,right leg slightly affected wearing splints on both legs,and now chest muscles are starting to weaken still getting 96%oxygen
iam hoping to get all the information on this disease i can,so ican look after him properly andto understand this terrible disease

I am so sorry to hear of your husband's diagnosis. It is very admirable of you to try to care for him and to educate yourself on ALS. This board remains rather quiet, but hopefully, more persons will respond to you regarding themselves or loved ones who have ALS.

Good luck, and I do hope that you and your husband can remain strong while trying to deal with ALS. http://www.healthboards.com/ubb/smile.gif

P.S. Does anyone else in your family have any significant health conditions? I'm always curious about these things, as I mentioned in my first post. http://www.healthboards.com/ubb/smile.gif

i'm glad to see people talk about this disease up until about 9 years ago, i had no clue what it was. then my father was diagnosed with it. i was 15 years old when he passed away, i am 21 now, but it still feels like yesterday. ALS is a horrible disease, i can't stress it enough. so i just want everyone who goes on here to know, if there's anything i can do for you... just let me know.

Hello. I am 21 years old. My father currently has ALS. I am glad someone brought this up. I have been looking into my family history more and more. We have autism in our family, but nothing else that seems abnormal. The docs tell us that my father has sporadic type ALS. Since his diagnoses I have obsessed with finding links of why this happens. My father did work at a copper mine for 35 years. With all the chemicals they use for the process I am not surprised with the diagnoses. For most his life he has been exposed to strange chemicals and poisons. He then got put on Lipitor for cholesterol, and suddenly got a staph infection one year prior. I believe with all those factors combined it triggered this horrible disease. I wouldn't be suprised if years from now they find a link with something as simple as hairspray and ALS. You just never know what can trigger or cause a disease. I have heard a lot of PALS say, they also had some sort of infection prior to their diagnoses. maybe it is an overgorwth of bacteria caused by misusing antibiotics. Has anyone noticed the similarity betwwen the side effects of using satin medicatioins, (which are used for high cholesterol), and the symptoms of ALS? What if ALS was caused from some of these crazy new medications that are on the market? We can't sue the drug companies for the stuff they give us anymore. Like the possible link between immunizations and Autism. The FDA claims no such link. Then why did they pull all immunizations off the shelf to "update" them? maybe to hide the fact that we are right, and the drug companies just didn't want to pay out that many people, who now have an autistc child from their mistakes. But then again... we have those kind of people who will sue anyone for anything just for money. And ruin it for the people who really deserve to sue. Go figure. Sorry to ramble on, but I do believe that half of the diseases including ALS maybe caused by something man-made and can be prevented. We just need to have more reasearch done. any ideas from anyone...anymore links or suggestions? it could help others discover how it came about.

[This message has been edited by slaughter17 (edited 02-19-2003).]

Thank you for your reply! I know the links between diseases are probably few and far between and buried within family histories, but I feel it is worth discussing anyway.

My paternal grandfather died of ALS at 41; he was diagnosed at 32. Yes, I realize that's an incrediblely long time for a person to have ALS and extremely a-typical. My grandfather underwent a lot of experimental treatments and tried various techniques. Somehow, he extended his life expectancy well beyond that of the average ALS patient, especially in 1958, when he was diagnosed.

Anyway, on to the links between diseases, which is the topic of my post. (I am easily distracted http://www.healthboards.com/ubb/smile.gif ). My grandfather's niece has fibromyalgia, as do I. These seem to be the only two diseases with any possible links... on that side of the family. Thus, if my family consisted only of my paternal grandfather's side, I would not think further.

However, when my paternal grandmother's side and my maternal grandmother and grandfather's sides are factored in, I begin to wonder what combinations made my family members who they are. To be more specific, I have family members (not necessarily immediate) who have or had an aortal aneurysm, rheumotoid arthritis, lung and colon cancers, uterine and breast fibroid tumors, alzheimer's disease, severe allergies, cystic fibrosis, muscular dystrophy, and other diseases. Mental weaknesses (ie. OCD, bipolar, social phobia, etc.) also seem to plague my family.

Perhaps everyone's family is like this?? I just wonder what combination of genes caused my fibromyalgia or whether it was a fluke. I also wonder what the introduction of a new gene pool (my fiance's) will/could cause in our children.

I guess this is just an outlet for the thoughts that occasionally plague me as I wonder how polluted my gene pool is compared to the average person's and whether having children (which I really want someday) would be wise.

Thanks for listening. http://www.healthboards.com/ubb/smile.gif

Also, how are familial and sporadic ALS distinguished? Is there a specific test or a certain number of family members within a certain number of generations necessary to determine familial ALS? Thanks! http://www.healthboards.com/ubb/smile.gif

P.S. I assume the ALS which is commonly found amongst citizens of Guam is confined there? In other words, is there any possibility of someone who does not live in Guam developing Guamial ALS?

My brother (44 at diagnosis) lived just over 3 years from diagnosis. It sucked pretty much. We watched a normal strong productive member of society turn to a helpless physical heap. He was the toughest character I've ever watched deal with this. We have no other history of any of the mentioned diseases. I still keep waiting for the evil disease to attack myself or my family. Everytime my thumbs get tired, or I think I'm short of breath...I think the worst. My brother had it in the extremities and in the toungue/chest/throat...he lost speech very fast. Just to let you know I have been reading. Nothing that was done could help. He had daily nursing care and was able to peacefully die inhis home. My mom, dad and I were there at the last. It was the only nice thing about the disease....his suffering was over. My parents (who have now lost 2 sons....1 to disease and one to an oddball accident) have really aged after this one.
My brother worked most of his last adult years as a sales person in the oil/gasoline/petrolium industry...his original symptoms mimicked (sp)? LEAD POISINING I'BE BEEN TOLD.

Keep the faith...it's all anyone has

In my research, I have read that the way they know the difference between familial ALS and sporadic ALS is done by a variety of tests. They do a full review of your family histroy. There is a specific gene that is affected, and it has certain flaws. The name of the well known Gene is SOD1. There are variations in several other genes as well. When they determine that you don't have the affected gene they ask if you have ever been to the Country Guam. The magority of the population in that Country have ALS. That is why they call it Guam ALS. I have no idea why the are not reasearching what is in their water, or their soil, or what ever. The answer could be right there. They know the specific genes that are affected, in familial ALS, that makes a person more susceptible. In sporadic type ALS it the gene SOD1 is aslo affected but the several other genes are not, and your family history has no signs of the disease. Some reasearchers believe that exposure to agricultural chemicals is likely to increase the risk, as well as exposure to lead, and high dietary fat intake. Just thought I would share my reasearch on the subject. They also have noticed the increase in ALS with the gulf war troops. They are currently looking into that. Maybe Sadamm knows the cause, and has used it. That wouldn't suprise me one bit.

There is a familial form of ALS aka ALS4 aka Mattingly Disease-found in relatives of the Mattingly family who settled in Southern Maryland around 1650. Check with Dr. Cornblath at Johns Hopkins.

Good Luck

Hi my grandfather was diagnosed with the disease at 67 yrs of age nad lived less than one year. We have no other know cases in our family however in the almost 7 years since he passed, I have found out that there have been 5 others cases within a 5 mile radius of where we live. None of the people affected had anyhting in common, workplace , etc. except for the fact that we all live in the same neighborhood.

Veggiegirl75:

Wow! are you sure it was ALS? This new knowledge is very interesting to me. If it was deffinatly ALS, then there has to be a man made reason, of why more and more people are getting this disease. I really think there should be more research done on how is it caused. Chemicals, preservatives, something has to trigger it. I don't know.... it just baffles me to think about a whole neighborhood affected. And most of the population of Guam. Has it been reported to the CDC? tell me more about this. where is this neighborhood...etc.

I am not sure if it has been reported or not. But all of them were diagnosed with ALS, all men in their 50's and 60's. The way it was explained to us is that some people have a certain genetic predisposition and something comes along to trigger that. What the exact triggers are is not known, however I suspect that there are numerous triggers. We live in Seaford,DE. Which is in the southwestern portion of Sussex County in Delaware.

in reply to veggiegirl75's post...

i definately think that there is some sort of "trigger" that sets this disease free, however, i have no idea what that so-called trigger is.

my dad was diagnosed in november 1977 with ALS and 5 months later, passed away....in april 1978. he was 57 years old. i had just turned 20 and had never heard of ALS. my dad on the other hand knew what ALS was, due to the fact that he was such an avid sports fan and knew of Lou Gehrig, along with the disease from which his name is so often associated.

my dad was employed in a "white collar" position, which was often times extremely stressful.

my dad served in WWII and had a tour of duty in the Philippines.....Agusan Prov, Mindanao,P.I.

doctors had told my dad that they thought (now, mind you this is going back to 1977) he contracted some "virus" perhaps while in the Philippines that remained dormant in his system for all these years....then "triggered", as i mentioned before, due to stress.

i did know that my dad, while in the service had contracted malaria, which is described as being a recurrent fever caused by a parasite which is introduced into ones system from the bite of a mosquito.

my family was told by the doctors that perhaps this may have played a role as to the underlying cause and start of his battle with ALS. there had been no mention of any "gene" associated with ALS back then.

who knows if this is true or not...

i try to put how i deal with ALS in its place....focusing not on the sadness of what was, but on the good times spent with my dad.
i had and still do have so much love and respect for him, he was a wonderful man. we shared alot...some good, some not so good...but i will always be able to look back on the good times and keep those memories of him alive in my mind and my heart, forever.

javainstl

Not a lot of people get to say they remember the good and the bad of their parents. You make it sound as if it all comes together as it wass supposed to. I am glad to say that I am not the only one who cherishes the momments left and the memmories that lay behind are both good and bad. I hold a lot of respect for those kind of people who can love and understand the era and time they were raised. It has been a long time since your dad's passing. I know you still think about those times you spent and remember the good. and that is all that counts. You keep his memory. Thank you for your post, as it did MUCH for me...

[This message has been edited by slaughter17 (edited 03-15-2003).]

[This message has been edited by slaughter17 (edited 03-15-2003).]

My grandmother passed away from ALS, and my mother and I have done extensive research on it and who it affects. As far as I know, we only have a 5% chance of getting the disease. I dont know if this has changed since, I found that statistic a few years ago.

That's odd. I wonder if there is some sort of link to Autism and ALS. Probably unlikely. My aunt was recently diagnosed with ALS and one of her sons is autistic and the other has MS. Maybe she is just unlucky? Also, I would appreciate any tips to cheer my aunt up. She has basically already given up on her life (she was just diagnosed a week ago).

yes, there is a similarity between als and autism. ...mercury poisoning. i just discovered it myself, but with all the vaccines containing mercury, childhood autism is increasing. i was recently diagnosed with severe mercury poisoning. my sister had ALS from the age of 23-34(died in 1996). my cousin (39 yrs. old) died just a couple wks ago with the same thing. his dad(my uncle) had it as well, but he had it just under a year before it took his life. so, i have seen a lot of it, and until just recently, didn't know the possible link of mercury and copper poisoning. my treating doctor holds the copper poisoning theory for ALS and mercury poisoning for autism. please send kind comments or questions. it's nice to share things in common and help one another.

HI...I am so glad I found this board.

My mom died of ALS in 1992. She was 72, diagnosed at 68. This is a lady who was hardly ever sick, didn't act or look her age and was also my best friend.

I, like others who have posted, know of no familial link or any otehr relatives who had anything like ALS, MS, MD, etc. It's a real mystery.

The neuro who made the diagnosis DID ask my mom if she was ever exposed to heavy metals. She said not that she knew of, although who knew what kinds of things she was exposed to growing up? Maybe she lived in a house w/ lead pipes? It is possible?

I hate they fact that they know little to nothing about this horrible disease. Why don't they do more studies? Is there a dietary link? Fats, sugars? My mom wasn't what you'd call fat, although her diet could have been better...too many simple carbs.

Thanks for letting me vent.

My moms sisters son died at 44 of ALS never been around any chemicals he was a lawyer,another sister of hers daughters son has autism and my moms parents and sister died of aneusysm {brain} under the age of 49. How does family history send down the gene when do you know your far removed enough {relative} from getting it?

My grandpa was diagnosed a year ago this upcoming October. It makes me so sad to see him deteriorate. His arms are weak and twitch alot and now his left leg gives out alot and he fall a whole lot.