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teigan

New member
Joined
Aug 30, 2010
Messages
1
Reason
Loved one DX
Diagnosis
09/1986
Country
AUS
State
Tas
City
Taranna
hi , our family has the genetic stem of als, apparently als hasn't skipped a generation yet. we can be tested if i have the family mutant gene, but im abit scared of knowing if i do or not, why would you want to know at 24. My mum was diagnosed at 30 and passed away at 35, but now i think im experiencing symptoms not quite sure, first off it was my right leg and left arm in pain , twitching and a tingiling sensation at times, like it was going numb happened for about a month, now that its stopped my back has decided to give my arm and leg a rest and started doing the same , my back has been like this for a week, i still have the strength in my arms legs and so i dont know what to think. What do you guys reckon?
 
If you still have strength then I would not be too worried. The usual first sign is weakness. Then you experience other things. I certainly hope you never have it
 
sorry to hear that your family has to deal with this beast. i cant give you a "right" answer. I understand what you are saying, that why would a 24 year old want to know, but maybe you should look at it differently. Is it a possibility that everytime you have a twitch or tingle, youre going to worry yourself "sick" that you may have ALS/MND? If this is the case, you may re-think getting tested. Then you'd have more of an idea if youre going to get it or not. And if you find out that you will have it, then you can live life the way we all should be, while you still can. Just my humble opinion.
 
tiegan - so sorry to hear about your situation...I can't imagine the stress and worry that puts on you and your family. I think I would lean towards LizT...get tested. Life is too short...blessings to you and your family!
 
teigan,

I reckon that you need to learn more about ALS, since it appears that you were young when your mother was afflicted with the disease and you don't really remember what the early symptoms of ALS are. Joelc has pointed out one aspect of early ALS -- the usual first symptom of ALS is weakness. I'll point out a second aspect of early ALS you may have forgotten. The weakness usually appears in one area of the body -- one hand, one foot, the tongue, or the respiratory muscles -- and spreads slowly to other areas of the body. It may take several months, or even years, for mild weakness in a hand, for example, to progress to total disability in that hand and arm. Quite frankly, the fact that you have had pain and tingling in one arm, one leg, and your back in the course of a month tends to point away from ALS as a cause for your symptoms.

Given your family's history with ALS, it's very understandable that you are especially anxious about neurological symptoms in your body. If you are not going to have the genetic tests done to find out for sure whether you carry the gene or not, the only thing you can do to keep the anxiety controllable is to learn as much about the disease as you can, especially the early stages. The more facts that you know about this disease, the less likely you will be to panic over some disinformation you find on the Internet.

Good luck to you.
 
trfogey makes a good point about educating yourself what is and what isn't an ALS related symptom. I see a lot of sense in getting the genetic testing done. At least you would have that question answered and would no longer have it to ponder.
 
Teigan, I understand your anxiety. My brother currently suffers from ALS, and wouldn't you know it that just 6 months after his diagnosis, my body started twitching and I had muscle fatigue. This has led to frequent cramping of both calves and feet. Even tonight, I have insomnia over it (it's 3 a.m. here, and I'm online looking for reassurance). Over the summer, I went on Xanex, went off Xanex, gave up caffeine, tried ignoring the symptoms, etc., but they remain. I am comforted by the fact that the twitches occur all over my body (rather than stay in one area, which seems to be the case with real ALS), I have no weakness (although plenty of fatigue), and if I am living in the moment and fully occupied and/or happy, the twitches stop or slow down. I don't think ALS slows down for happy times.
I guess I'm trying to demonstrate that worry and anxiety from being a relative of an ALS patient really takes its toll. It's affecting me enough that my doctor has started a battery of tests. Hang in there!
 
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