Have I inherited ALS?

[victoriaht]

My grandfather had ALS, and, sadly, our family watched him slowly die -- he did live for eight years after diagnosis. I have read that if my father carried the gene my odds of getting the gene (and getting ALS) are 50/50. My father died of congestive heart failure at 54, so he didn't live long enough to rule out his having ALS. Now I'm having symptoms: weakness in hands and arms (symmetrical), tingling in limbs, slurred speech, muscle wasting (not severe yet) in hands and arms and twitches (especially in legs after excercise). I had an EMG several months ago before the slurred speech began. I'm worried sick. Should I be? Any suggestions on getting ALS ruled out? Another EMG by same Neurologist, or should I see an ALS specialist? Check for the gene? Any thoughts appreciated. Victoria

 

[marlo]

Hello Victoria,
Sorry to hear about your father and grandfather. Yes you could have inherited it, however it's a fairly small percentage that does. I would suggest another EMG test by another neurologist. Thats what they had me do. Am i correct in assuming that the first one was negative? I was put through a series of tests,scans,MRI as well as blood work done before being given the diagnosed. If your first one was negative, it may be too soon for them to diagnosed.
I'm sure there are others on here that might have more suggestions for you,, but thats what i went thru.
The best thing you can do is stay calm and positive. I hope you find the answers your looking for soon, the not knowing for me was worse than the disease.
Love and Prayers
Marlo

 

[victoriaht]

thanks

Thanks, Marlo. I've been wondering if the first EMG was too early to DX. I'll definitely have another.

 

[marlo]

Hi Victoria,
I do hope you get good news. Sometimes our mind play tricks on us,, and makes us think we're having symptoms of ALS when it's really just stress doing it. So stay calm,, and let us know how things are going with you as time goes on. Also what the next EMG test shows.
Love and Prayers
Marlo

 

[HelpUs]

Help Us

:-? Hello This Website Is So New To Me I Need Help. My Question Is Do People With Als Get Violent?

 

[marlo]

Hello Help Us,

I think we could all use some of that,, hehe. To my knowledge,, no ,, we do not get violent. However, we do have some bad mood days that i suppose could be intrepeted as that. Maybe some of the others on here have had more experience in this area than i have had. But i do know of 2 other people around me that have ALS and i've never heard of them being violent.

Love and Prayers
Marlo

 

[Al]

As a general rule violence is not an average symptom of ALS. The frustration and depression from it can cause lashing out in persons prone to that behavior. With time usually comes acceptance and calming down.

 

[alsofmichigan]

Hi Victoria,

I found this site searching the web. I am the Executive Director for ALS of Michigan and maybe I can offer some help/support. I would agree that you should continue with the neurologist. It can be very difficult to diagnose ALS, and many other diseases can produce similar symptoms. So you may very well not have ALS --but you need to get a definitive diagnosis, and these tests are the way to do it.

Your grandfather seems to be the only one who you know of diagnosed with ALS. Very often, with the familial form (genetic), many relatives can be identified with the disease. I too, had a father who had ALS, and to this day he is the only one who we know of that had the disease.

The issue with the genetic testing is that several genes seem to be implicated in the familial form of ALS (only about 10% if all cases are familial, the rest are what is called sporadic - or no known cause) and the test doesn't cover all of them. So unless you had the gene(s) the test covers, you could get a false negative.


I hope this helps, and let me know if I can provide any other information.

Sue B.

 

[MaggyQ]

I have been having problems (at least discernible ones) since the last quarter of 2003.
It began as a feeling that I was slightly dragging my right foot. At the same time, I began to experience daily cramping (of the charley horse variety) in my right calf. This continued until approximately June 2004, when I developed a right foot drop. This first manifested on a trip after I exited an airplane. I was wearing slip on wedge heeled shoes and found that I could not grip with my toes and that my ankle kept wobbling.
I had great difficulty exiting the airport.

The odyssey with neurologists began upon my return in July 2004. I've seen 5 sets of neurologists, including the Mayo Clinic in Arizona. I've had MRIs(lumbar, cervical, thoracic), MRA (to check the arteries), ultrasounds, EMGs/NVCs(at least 4/5), batteries of blood tests (lyme, CBC, and the exotic variety from Athena Diagnostics,
looking for genetic disorders, parneoplastic syndromes, CMT, you-name-it.), and a spinal tap to rule out infections. MRI's were essentially negative as was all the blood work.
Weakness on the right side has shown up in the EMGs/NCVs, as would be expected.
(I haven't fully digested the technicals of the latter tests.) Spinal tap was also negative. MRA showed no blocked arteries. (The last round of tests was in April 2006)

By March 2005, the foot drop and resultant limp had worsened and was persistent.
At that point I found I could not move my big toe and second toe. Mild atrophy was present in my calf. (A doctor pointed it out to me, as I had not noticed.)

Eventually, the atrophy worsened and progressed up my thigh. As of now, it is quite noticeable, with my right leg being approximately an inch smaller than my left.

In October 2005, I was prescribed an AFO, which has helped with the foot drop.

Over the past year, it became more difficult to use stairs. The weakness in my thigh muscles as it relates to lifting my leg is the most noticeable.

The doctors I saw last year opined that I may have monomelic amyotrophy, since the
problem has heretofore seemed confined to the lower right limb. SInce they said there was nothing to be done, and just to call if I got worse, I decided to go to Mayo Clinic in
April 2006.

Part of the reason I went to Mayo was that the doctors did not seem to be taking into account a severe spider or insect bite I had suffered a year before my troubles began (December 2002). The wound went necrotic, was quite deep and took a year to heal. It was on the exterior portion of my right calf in an area where it could impact the peroneal nerve. From the outset, I was convinced that the bite was the source of my problems.

To answer anticipated questions, I was never sick from the bite. I did take a 10 day course of antibiotics. I doubt it was lyme or that I was bitten by a tick.

One notion floated by a doctor was that I might need a hysterectomy because the MRA revealed an enlarged uterus. Compression was considered and then ruled out before I had the surgery.

The doctors seem to be in agreement that my problem is axonal, not demylineating or inflammatory. I have no pain or sensory deficts.

I have no real diagnosis at this point. The Mayo doctors are in a wait and see mode. They suggested I have a repeat EMG/NCV in 9 months to a year. I must confess that they gave me bad vibes. They're not sure it's monomelic amyotrophy, which would be a more benign outcome. There is nothing to be done to correct my current level of disability. (I suspect they figure I'll progress to ALS.)

As a result of all this, I find myself feeling hypervigilant about every little feeling, tingle,
etc. I experience. I'm not really sure how to determine whether my condition is prgressing to other regions. I have no UMN symptoms at this point. Only LMN in the right lower limb.

I've been reading forums like this for descriptions so that I could determine what to look for as well as anything concrete as to a trigger of neurological conditions by trauma or bite/infection.

I'm trying not to let myself get bogged down in fear. I work long hours and have many demands on my time. I just have to move forward.

If anyone has any ideas about the effect of the bite or doctors who have treated these symptoms from the standpoint of a precipitating injury, I would greatly appreciate it.

Any resources you could point out that actually describe how bulbar symptoms feel or appear, or how weakness in arms/hands/fingers actually manifests would be appreciated as well. I don't want my mind to play tricks on me, as I suspect that it has been doing, at least in part.

Thanks for your patience in getting through this big description.