Worrying symptoms from someone with FTD in the family

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Yohan

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Hi everybody,

I lost my mother to FTD which makes me somewhat susceptible to ALS. I guess this fact should have hung over me, but I never really thought about it. This month, I have begun experiencing weakness in both forearms and thighs. I also feel I have a tendency to slur. This has not been noted by friends & family but may be because I make an effort to articulate correctly. While slurring could be attributed to a "cracked tongue" (i.e. grooves on top of it), I see no reason for the arm/leg weakness.

I also experience sensitivity to cold, almost fever-symptoms, and a general feeling of "not being ok", if that makes sense, and a "shaky arms"-tendency. I have no fever (actually, slightly lower than normal temp) or any real tangible symptoms.

Now, this made me worried, mainly because of my mothers FTD and I arranged an appointment with the family MD. After investigation and blood tests, hypothyroidism, B12-vitamin deficiency and anemia could be ruled out, leaving me in the dark, at least for now.

I studied up on ALS once my mom was diagnosed and as far as I can tell, the first symptoms seems to be either bulbar onset (slurred speech) or limb onset, with muscle weakness in an arm or leg. But I have weakness in both arms and legs AND a tendency to slurred speech, all within the last 4-6 weeks. The weakness is growing more pronounced, but I am still not weak, only weak as compared to some time ago, and I have no problems tying shoes, buttons or any such activities.

But still, the symptoms are very frightening and I guess my question to this knowledgeable forum is whether early stages of ALS usually present themselves symmetrically, e.g. in both forearms and legs at the same time. I'd say that the weakness is roughly the same in both forearms and legs. So, does it sometimes present symmetrically, or is it usually asymmetric?

I have managed to get a neurology-appointment, but everything takes time and the situation is very taxing on my day-to-day life.

Thank you so much for your help.
 

Nikki J

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ALS is usually focal in onset. either one limb or bulbar. Four limbs and bulbar altogether ? No. Not at all a pattern that is usual

I am sorry about your mother. Although you are correct that some genetic forms of FTD are also implicated in ALS ( c9orf72 being by far the most common) it is also true that there are genetic forms of FTD that do not also have an ALS risk that has been seen and other forms of FTD that do not appear to have a strong genetic component.

it is good you are seeing a neurologist for evaluation. Until then try to keep busy and stay away from Mr Google who can only increase your worry without helping.
 

Yohan

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Thanks for your kind words.

It seemed strange to me that many sufferers first notice that they cannot use a limb properly, like when they try to tie a button. It would seem to me that the limb would get gradually weaker until fumbling started, which would be noticeable, or at least I'd think so.

And you are right, Google is not helpful, not at all.
 

Nikki J

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I agree the failure without feeling weak is strange but unless you actually experience it you can’t understand. I knew it in my head and had seen it in my family but until it was happening to me I didn’t get it. I remember describing my experience to my sister who was diagnosed 2 years before me. She just nodded and said yes
 
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