Familial/inherited cases

[jsmida]

Does anyone out there have ALS that runs in your family? Want to know if the symptoms started the same in your cases. Our family seems to have cases that start in lower limbs (arms) and now have a case that has started out in bulbar symptoms (speech).
Is there a support group for those who have it run in their families since the incidence is less than10% ?

 

[Al]

There is a support group in London. I don't know if they have a group large enough to have just a familial group. You could call and ask. Go to www.alsont.ca and click our services to get the number.

AL.

 

[donnainwash]

familial family

I also have familiar als. My mother had it exactly at the same age I came down with it. she had bulbar type and only lived 4 months after diagnosed. I assumed that would be my fate too, but here it is my third year. In my case legs, arms, breathing, eating seem to be progressing at the same rate. I still have limited use of arms and legs. I don't know how this will progress. My doctor didn't seem to know how fast this will go, slow like this or speed up. When you have seen this disease up close and personal, I sort of knew what was happening. Doctors were sure I was wrong, but finally got a diagnosed.

 

[Wendi]

famial bulbar

Like you I saw my mother with this illness. She had the bulbar type, at first the doctor thought it was a stroke, but when she could not speak at all and still walk she was diagnosed with ALS Bulbar. She was 87, she lived 7 months after diagnosis, she would not have a PEG. I am 63 and I have symptoms, with swallowing and my speech is getting very unintelligible. Have been to the Neuro, and had some tests, but no diagnosis yet, I think I know what it is. My husband died in a car crash 3 years ago, I feel so alone with this. I hate this time of year it makes everything worse.:-(

 

[Al]

Hi Wendi. Sorry about the way things have gone for you. I hope we can help you get through this. It's not easy but know that you are not alone. There is someone here most hours of the day and night due to our global network of friends. Take care.

AL.

 

[vmd]

Yes, Wendi we are here for you. I will keep you in my prayers.

 

[BethU]

Hi, Wendi ... I'm so sorry about your husband and your mother, and the anxiety and lonliness you must be going through now.

Are there any ALS support groups in your area? Sometimes having "face time" with others, and some hugs from people who know what you're going through helps a lot. If you're a church-goer, maybe you could help out with holiday programs. Don't try to hide your worries from your friends and family. Get all the support you can. And we're here ...

Take care.

 

[abitofaprincess]

Familial ALS

My mother died three years ago after being ill for two and a half years. She presented with dementia symptoms at 65, becoming very insular and obsessive. She would sit and watch the same film over and over (Pride and Prejudice), and she had paranoid episodes which progressed quickly. Eventually she became very apathetic, not interested in keeping clean, showing no affection to her family, and coming out with uncharacteristic and hurtful comments.

Alongside this, she lost weight and became very weak. She had trouble swallowing, and ate virtually nothing. Unfortunately, my mother's case was mishandled - she was referred to a geriatric psychiatrist who had her admitted to a psych ward where she received no treatment, contracted pneumonia and died from respiratory failure.

After her death (which was sudden) my sister and I realised that many of her symptoms pointed to MND or ALS.

I am 46 and began with weakness, cramping and fasciculations in my feet and calves last May. I am currently awaiting EMG test results. I think familial ALS may be more common than they say.

 

[DeeMichelle]

Familial

Does anyone out there have ALS that runs in your family? Want to know if the symptoms started the same in your cases. Our family seems to have cases that start in lower limbs (arms) and now have a case that has started out in bulbar symptoms (speech).

Hi Sorry to come in at the middle of all of this.

In our family some have begun with Bulbar, like my Dad and others lower limbs (legs). The youngest died at 57, but others have lived into their 70s.

Symptoms, progression and treatment has been the same as sporadic cases.

We do not have the SOD1 gene.

There have been at least 5 people in our family. I do not have ALS though I am younger than the age at which my family members tend to develop ALS.

Hope this answers your question a bit.

abitofaprincesss I hope your EMG results suggest something other than ALS I really do.
Dx

 

[DeeMichelle]

Like you I saw my mother with this illness. She had the bulbar type, at first the doctor thought it was a stroke, but when she could not speak at all and still walk she was diagnosed with ALS Bulbar. She was 87, she lived 7 months after diagnosis, she would not have a PEG. I am 63 and I have symptoms, with swallowing and my speech is getting very unintelligible. Have been to the Neuro, and had some tests, but no diagnosis yet, I think I know what it is. My husband died in a car crash 3 years ago, I feel so alone with this. I hate this time of year it makes everything worse.:-(

Wendy I'm sorry you feel so alone I hope you can find comfort here.
Dx