zxcnotzxc
New member
- Joined
- Dec 24, 2022
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UA
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.
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.