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Sefeene

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Apr 10, 2018
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Lost a loved one
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Minnesota
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Staples
Hi just joined today. My father died three years ago in May from ALS, then a year ago his brother died from ALS i just found out 2 of my great uncle's died also from ALS I am a 47 year old woman and in the last year or so I have had some weird things happening to me sometimes my speech is slurred and swallowing is hard it does not occur all the time so its hard to say i have bad joint pain in my elbows and fingers and my legs hurt also and very fatigued, I guess I'm just scared since it is familial and maybe it's all in my head, I have been to the doctor for many blood tests for autoimmune disorders and thyroid issues and all came back normal , can anyone tell me what might be going on I'm also very fatigued all the time
 
Sefeene,
I'm very sorry to hear of your many family losses to ALS. If none of the people you mention had genetic testing, you might consider it for yourself, both for your own sake and for that of the others that such research may ultimately help. I am sure Mayo could be a resource for you in terms of evaluating you as to anything worrisome, and sharing any clinical protocols for which you would be a valued research resource.

Best,
Laurie
 
I’m sorry to hear about your family history.
Joint pain has nothing to do with ALS. Keep working with your doctor on that one. If they don't find arthritis, it could be fibromyalgia which can be associated with pain and fatigue, among other symptoms.

Regarding the speech and swallowing concerns, a visit to an ENT doctor may be in order. Many things can cause this, for example GE reflux, which can be aggravated by NSAIDs you might have taken for joint pain.

ALS would not be a top concern, even with the family history. Best of luck.
 
I think sometimes it's necessary to go through the evaluation just to put your mind to rest. I would definitely take Karen's advice but, if it were me, I would probably go to a neuromuscular expert and present your family history and concerns. Johns Hopkins and University of Florida did genetic testing on me and it was free.
 
Hi Sefeene,

While your symptoms do not align with onset of ALS, I would still bring your concerns to the above suggested places for genetic testing. You can then have the answers needed to put your mind at ease. If you are not a FALS, being a SALS would be a 1 in a 1,000,000 chance of getting ALS and you can live your life with out that worry hanging over you. If you are a FALS, there's nothing you can do about it, unfortunately.

Please keep us posted as to what you decide to do. I believe genetic tests take about 6 weeks for results so if do decide to go forward with testing, let us know the results.

Good luck.
 
Thank you all for responding time will tell and as far as getting tested that's a very hard one for me to do I think a counselor first would be helpful in what to do a genetic counselor at that I do want to know for my 4 beautiful children so they know also and on and on again thank you and God be with you all who have ALS !!
 
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