FTD/ALS Possible?

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New member
Dec 24, 2022
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Hello everyone!

I'm trying to figure out what is happening to me and I presume it is FTD/ALS.

I'm a healthy, non-smoking, no alcohol drinking, regularly doing sports (except for the last year) 27 yo male from Eastern Europe.

It all began in August 2022 with little urinary incontinence. Also after walking I started to notice that my left leg is much more exhausted and tired than the right one.

Then everything remained the same till mid October when I felt muscle numbness and spasticity in my both legs. It is not limb numbness when you don't feel a limb, it is muscle numbness when you don't feel muscles. Maybe sounds a bit weird, but dunno how to describe it more exactly.

After that I visited a neurologist, he found no pathological signs, but hyperreflexia in both legs and suggested it could be multiple sclerosis. Then I did brain MRI, no MS or other abnormalities found there. I also did some blood tests, everything is ok there as well.

Now I have:
1. Fasciculations throughout my body when I rest/trying to sleep (tongue, lips, legs, hands, shoulders, chest, abs etc).
2. Hypersalivation (excessive saliva production so that I have to swallow it every 5 secs).
3. Changed the way I swallow, its not difficult, its just other. I also don't feel food or drinks going down through the esophagus.
4. A little bit slurred and slowed speech.
5. A weaker voice.
6. Permanent urinary incontinence.
7. It is hard to breathe, especially when lying down in bed so that I have to lie on my left side to breathe easy. My breath became frequent and not deep as well.
8. My back and hands became much weaker, right now I can't sit and work on the computer for more than like 5 minutes without rest, because both back and hands become tired.
9. Muscle numbness throughout my body.

Even before neurological symptoms (about a year before) I developed some psychological ones. They weren't strong at first and didn't affect my everyday life but now I have strong apathy, anhedonia, lost interest in all my hobbies, social withdrawal, its now difficult for me to concentrate, I have problems with short-term memory, increased appetite.

I also visited another neurologist and 3 psychiatrists, did some tests, nothing abnormal found, except for depression. The problem is that they didn't do FTD-specific testing and I doubt if they are aware of FTD as a type of dementia at all. Been on antidepressants, but nothing changed.

To sum up, all doctors that I had visited told me that they don't know what's happening to me, they believe it's most likely depression. I tried to mention FTD/ALS, but they told me its not. The problem is that FTD/ALS is super rare, especially at 27 years. And I believe there aren't many doctors in my city who dealt with FTD, ALS or FTD/ALS. The symptoms are getting worse with time and I don't know what to do. It is a little scary that 3 months into disease I've developed breathing problems. I've done some research and found out that in case of FTD ALS may begin as generalized type.

So, could it be FTD/ALS?

If anyone has any idea what to do, I would be very grateful.

Thanks in advance.
Your symptoms are hallmark for depression. You literally tick every box of the DSM5 list for major mood disorder (MDD), depression subtype. What your symptoms don't say, not even a little bit, is ALS, let alone ALS with FTD. Antidepressants can take up to 6 weeks to feel the full effect.

Give them.time to work. You don't have ALS, but you do sound depressed. I hope you're talking to a professional for help.with this.

Good luck to you.
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I lost my husband to ALS with FTD.
Honestly, not what you are describing at all.
Your doctors have tried to tell you this, and we are not going to argue it.
I'm so sorry as I see you are in a bad place.
Hi everyone and thanks for your answers.

I've visited another neurologist. Here's what's found:
- both hands slight hypotrophy (idk what it means, I suppose its atrophy)
- positive Babinski both legs
- both legs hypotonia (reduced muscle tone)
- slight dysarthria.

Still no diagnosis. I'm going to do EMG within the next couple of weeks to rule the things out.

As for now, do these signs point for ALS?

Thank you
What did the neurologist say about these results?
Really if the doctor found these on examination, that is who you should ask for the meaning in the context of that examination. Did they discuss this with you?
It doesn't sound like clinical weakness was detected or discussed and you have slight changes.

Let us know when you have EMG results, that will give us a lot more solid information to help you with.
Unfortunately, my condition didn't really change since my first post, maybe my speech became slower and voice got weaker, its hard to analyze actually. In this post I tried to point out the new things found by the doctor.

Forgot to say, the neurologist detected no clinical weakness. Though she found what she called "hypotrophy of upper limbs". She supposed it's probably multiple sclerosis, but she's not sure.

Finally, she referred me to another doctor who specializes on such diseases as MS, ALS etc, who will do some more tests including EMG.

I find it strange to presume it's MS, as I doubt if it can cause widespread twitching, weakness, atrophy etc and not be detected by MRI. But let's see what EMG will show.
Well, nothing points to ALS, so that could be something the neuro wondered about as a possibility.

Please update after you've had your EMG.

Good luck to you
Thanks for clarifying.
You have two completely conflicting statements that are important. This is why no one really thinks ALS.

Firstly you said: Forgot to say, the neurologist detected no clinical weakness.

Then you said: I find it strange to presume it's MS, as I doubt if it can cause widespread twitching, weakness ...

The key here is that you feel weak, but the doctor did not find clinical weakness and that is the hallmark of ALS.

Lots of people twitch, and much of the time it is benign.
Slight atrophy can be completely benign too - if you are doing less because of all that is going on, you will lose some muscle mass.

I truly hope you get answers soon.

The last note I will make is that a big hallmark of FTD is that the person has no idea that their behaviour and perceptions on life have changed. They are highly offended if anyone suggests there is any change. So for you to try to insist you must have FTD and they didn't even test you is moot. They will have had a good idea of many behavioural things by clinical observation during your time with the doctors.
Hello everyone.

Just a quick update here. I've done EMG for my left hand and leg (4 muscles in total). The result says there's no evidence of Myasthenia Gravis or MND. Some fasciculations were detected, but considering there's no signs of MG/MND, the doctor believes its most likely BFS.

So, I will try to figure out the reason of my symptoms, but as for now it's not ALS.

Thanks everyone for your replies. I guess I'll stay out of this forum in the near future at least.
Great news -- thanks for updating.
great news. Please do as you said, you wrote this post over 1.5 hours ago and are still here. that is the only reason I'm replying.
Log off, and make a plan to work on overall health and wellbeing. All the best.
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