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hope28

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Im a 28 year old male who has experienced the death of a father and grandmother from ALS. I was diagnosed with crohns disease when i was 20 and have been on a blood thinning medication since. I know your not doctors but wanted a consensus of typical symptoms and the possibilty of als skipping generations or just affecting everyone who has a family member with the disease. How often does ALS go from one member to the next with that much consistency. I guess it would be comforting to hear that familial ALS is not common and the possibility of it destroying three family members in a row is rare. But im here to hear the truth. Im also curious of how als affects the young and physically active individuals. Ive been working out for over 10 years and have allways eaten high amounts of fruits and vegatables and had a high protien diet. But lately i really started to recognize twitching in random areas and even localized for short periods. I have been known to overworry myself in the past so i may be over analyzing the situation. I dont have any limb weakness, but have experienced cramps in my forearms and foot after flexing it hard or after a workout .Mostly its in the muscle ive trained the previous day. The twitching occurs when the muscle is relaxed not when im walking or exercising. These are small and cant be seen from the outside of the skin. Im going to see a specialist ASAP but was very worried because im not sure what else could cause twitchs and for all i know this could have been going on for years i just ignored it and ruled out the possibility it was als.

thank you , Dion
 

boxer22

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dion,

Hi, Like you said we are not doctors so it's really hard to comment on. The fact that it runs in your family is concerning so I would go see a neurologist and get some testing done. Ive heard over and over that having no weakness is a excellent sign! And everyone gets cramps sometimes espeallily after working out hard or flexing. That's normal. How old was your father and grandfather when they were diaonosed? We are all here for the same reasons so I think the best thing we can all do is try to stay postive the best way we know how. I know it's hard but we will go crazy if we dont. Since it runs in your family you should go to an ALS clinc and be evautated by a ALS doctor. Thats what I am doing. Do you have a clinc in your area? Good luck and let us know how it goes!

Ashley
 

hope28

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My father passed from ALS when he was 40 , his mother when she was in her 50's. Im not sure what clinics are in jacksonville florida that will work with me. I think that God has a plan for my life and were all destined to die once wether its in 20 years or 50 years. I get back to you when i get find out whats going on with me.

DION
 

hopingforcure

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As Ashley said we are all here for you. Ok first of all so sorry that your family has been struck so hard by this darn monster. The genetic test for als is not a tell all test, I believe about 20 percent of people who have family inherited als will show the gene, so another als mystery. I may have it in my family also, it is a real mystery for our family. If your parent has als you have a fifty percent chance of inheriting the gene for als, now here is the tricky part, maybe you will never come down with the disease. If it was a grandparent and your mother or father did not have als, then you do not get the gene.
Hard to explain but like this, if my mom had als, and I had als my child has 50 percent chance, but my sister does not have it, her children will be spared. I hate this disease so much. I would go to a MDA clinic, or even call, they will help you get in, and start getting some answers. I agree with Ashley WEAKNESS is the thing you need to have ALS, and atrophy, so without those 2 things, well you could just be overthinking things, after all Crohn's is not a picnic(no pun), have a sister with that.
We are here for you ask away. Hope I did not confuse you, just ask and I will try to help clarify. Familial ALS, confuses all of us...
 

boxer22

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My father passed from ALS when he was 40 , his mother when she was in her 50's. Im not sure what clinics are in jacksonville florida that will work with me. I think that God has a plan for my life and were all destined to die once wether its in 20 years or 50 years. I get back to you when i get find out whats going on with me.




Dion,
Here is the info for the only ALS clinc in your state. It's about 3 1/2 hours away from you. I think you should call and tell them about your family history and symptoms and make an appointment. Most clincs will let you make an appointment without a doctors referel. I think you should go because it will make you feel better to see a speclist. Some people drive a lot further then that to an ALS clinc because a lot of states don't have one. Thankfully yours does. Here is their info. Good luck!

"Suncoast ALS Clinic"
Department of Neurology
601 Seventh Street, South
St. Petersburg, FL 33702
Medical Director: Steven Cohen, M.D
727-824-7132
 

hope28

New member
Joined
Mar 23, 2008
Messages
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Loved one DX
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US
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florida
City
jacksonville
As Ashley said we are all here for you. Ok first of all so sorry that your family has been struck so hard by this darn monster. The genetic test for als is not a tell all test, I believe about 20 percent of people who have family inherited als will show the gene, so another als mystery. I may have it in my family also, it is a real mystery for our family. If your parent has als you have a fifty percent chance of inheriting the gene for als, now here is the tricky part, maybe you will never come down with the disease. If it was a grandparent and your mother or father did not have als, then you do not get the gene.
Hard to explain but like this, if my mom had als, and I had als my child has 50 percent chance, but my sister does not have it, her children will be spared. I hate this disease so much. I would go to a MDA clinic, or even call, they will help you get in, and start getting some answers. I agree with Ashley WEAKNESS is the thing you need to have ALS, and atrophy, so without those 2 things, well you could just be overthinking things, after all Crohn's is not a picnic(no pun), have a sister with that.
We are here for you ask away. Hope I did not confuse you, just ask and I will try to help clarify. Familial ALS, confuses all of us...


So most patients have muscle weakness and limb function loss before twitching.
And refering to familial ALS, you can have the gene but not develope the disease? (weird)
Yeah i may be over analyzing things because i dont have any muscle weakness or atrophy. Just small twiths in my back, shoulder, arm , gluteal and leg muscles.
 

hopingforcure

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Sometimes, you do not live long enough to develop als when you have the gene, maybe that explains it a little better. Atrophy and Weakness, yep that is what really are hallmark's. So sorry you have to be dealing with this, do call the MDA, if nothing else, every person who has familial als in the family to me is a step closer to a cure, maybe you could take part in some research things going on, or the like.
 

hope28

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Joined
Mar 23, 2008
Messages
5
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Loved one DX
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florida
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jacksonville
dion,

Hi, Like you said we are not doctors so it's really hard to comment on. The fact that it runs in your family is concerning so I would go see a neurologist and get some testing done. Ive heard over and over that having no weakness is a excellent sign! And everyone gets cramps sometimes espeallily after working out hard or flexing. That's normal. How old was your father and grandfather when they were diaonosed? We are all here for the same reasons so I think the best thing we can all do is try to stay postive the best way we know how. I know it's hard but we will go crazy if we dont. Since it runs in your family you should go to an ALS clinc and be evautated by a ALS doctor. Thats what I am doing. Do you have a clinc in your area? Good luck and let us know how it goes!

Ashley

Ashley just curious who in your family has or had ALS?
Also i think im going to Mayo clinic they have the best doctors for this disease.
 

DeeMichelle

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Mar 20, 2008
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Hertfordshire
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St Albans
Hi
We also have familial ALS in our family. My dad is being testing for it now after showing symptoms. His brother and 2 of their sisters had it. I'm trying hard to support my parents and keep positive. The one thing we have all managed to do is pull together.
I hope you get the support you need. Wish I could say more to help you...
All the best
Dee
 

siuska

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michigan
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detroit
als-tdi

Hi Dion,
You might be interested in this website...it is an independent research facility dedicated to finding a cure for ALS-...there is a forum on this site and anyone with ALS in their family can talk to the researchers directly...It was founded by a couple of people with familial ALS...i think it is a good idea to go to the ALS clinic, but you can talk to these people and they can give you information and any new developments on ALS genetics.
They could probably hook you up with someone in your area.
S
http://www.als.net/
 
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