My father had almost all symptoms of ALS

[Alsmess]

Hello,
My dad is 55 years old, male. He had some problems this year.

1- Loss of strength in left arm:

He started to lose strength in his left arm very slowly. At first it was not so big loss, but in last 2 months, he said it lost strength much more. He lost a lot of strenght. Losing the arm wrestle to even my mother in left hand, although he can manage to win easily with right hand. I tell him to squeeze/pinch my arm with his right hand, he has normal power and i say “stop” because he is strong enough to give me big pain on my arm. But when he pinch/squeeze my arm with his left hand, he is not strong enough to give me a pain. (Telling this to give an example of his strength difference). So, normal in right, but less strength in left.

2- Slurred speech

He had problems to speak clearly in last 6 months. It went worse slowly every month. He was clearing his throat very often. He sometimes can not finish his sentence and need to repeat it. Also volume of voice is like %50 less. Because of this problem, he speaks a bit slower than his normal too. He went to a doctors 2 months ago considering it is a nose/throat problem, they couldnt find anything and considered it allergic/psychologic, which is not.

3- Twitching

His arms are twitching 7/24 now. Twitching started like in 5-6 months too from time to time, but lately it is twitching in his arms and some part of legs a lot lately, especially after he thinks that “he can have ALS”. He is a stressful person normally, so i guess twitching may be increased because of stress too, right?

4- Laughing much more than before

He is not a man that laugh a lot. But this year, in last 4-5 months, he was laughing at little jokes or chat we have in our family talking. Normally he would not laugh at these things. My mother used this sentence a lot to make a joke although we dont have any idea about Als or something at those times “what happened to you lately, im shocking that you laugh so much lately, you changed after 55 years old”. He sometimes cant manage laughing. We realized this too many times although we didnt suspect anything, but who would know this is a symptome of ALS too...

Now, when we look at the symptoms of ALS, my father have all of them. We applied to a norologist adter recognizing this, and doctor said “a motor neuron disease(MND) is very probable”. My father is at hospital now, they will have examinations everyday but giving diagnosis will probably take 20/25 days, because they will make all tests of course.

Note: He can close his buttons , he can write without problem, he can stand in one leg(in right or left).

So, i just found this forum and see there are lots of people have good knowledge and experiences in this disease. So we worry that my father have MND 99%, and if he has MND, it is most probably ALS, considering that he has all related symptomes and 80-90 of MND problems are ALS diseases. I just hope we are wrong.What do you think about it?

 

[KarenNWendyn]

His symptoms are certainly concerning, though there are still other conditions that could explain the symptoms. Part of diagnosing ALS requires excluding other conditions that may cause similar symptoms. The EMG also has to be consistent with MND/ ALS. I hope he will be seeing an ALS/ neuromuscular specialist. Is he in Istanbul? I would think there would be some good specialists there.

Best of luck to you, and let us know how it goes.

 

[Alsmess]

Yes he is in Istanbul. There will be many tests he will undergoing but it will take at least 3 weeks to hear exact diagnosis from doctors. When we asked to doctor that “all symptomes make us worry about ALS” he said “there can be any other MND disorder or something else” , of course doctor will not tell even if he thinks it is 99% MND/ALS, he will tell only when they find exact diagnosis from examines and tests.

It just seems to me that it is definitely a MND. I just don’t know how fast would ALS progress. I know people in ALS can die in average 3-5 years (around %10 of them 10+ years) but i don’t know how fast it goes worse. Yes, it changes from person to person but, is there an approximate time frame that average time for stages of ALS?

I wonder this because it has been 6-7 months since my father experiences these things but he can easily drive a car. He was driving 10 hours in total last week on his way to/from summer holiday. If he has ALS, it means symptomes started at least 6 months ago... Can an ALS patient like him drive a car so easily, in his 6th month ?

 

[KarenNWendyn]

Doctors want to be 100% sure before they tell someone they have ALS. There still are other things it could be. We have seen many people post here, absolutely convinced they had ALS, and it turns out to be something else.

Everyone who has ALS progresses at a different rate and has a different sequence of functional loss. There is no way to give an approximate time for different stages. Some people die in less than a year from diagnosis. Others are alive 20 years later.

I was still driving until 2 years after my symptoms started.

 

[Alsmess]

Thank you for your answers.
I am checking topics and what i usually see is loss of strength/muscle or twitching problems. But have you ever seen someone with having all 4 symptomes i mentioned together ( slurred speech, loss of strength in one side, unable to control laughing and twitching problems) and still not be ALS?

 

[KarenNWendyn]

There are some stroke syndromes, tumors, and autoimmune conditions that can cause similar symptoms.

I know it’s hard to wait for all the tests and doctors to finish their assessments, but I would encourage you to be patient. Hopefully you will have answers within a few weeks. Some people on this forum had to wait a year or more to get an accurate diagnosis.

 

[Alsmess]

Thank you.
I researched that MS also has similiar symptomes. I hope its MS (which is also serious illness but not usually fatal) or something else than ALS , we will see...

 

[Alsmess]

Karen,
Hello again,
My father was in hospital for 6 days, they have made a lot of tests, MR, EMG etc.
Doctor said that '' I would like to tell good news but, it doesn't look good. He has ALS for more than 90% probability. But still, we will say diagnosis after seeing all tests and ruling out other possible diseases''. Now my father is back to home and some of the tests (like DNA test or other tests that I don't know much) will be clear in 2-3 weeks and doctors will probably put diagnosis next month.
I looked his EMG result from internet and it says '' These findings are consistent with motor neuron involvement. '' (consistent or coherent, but you know what i mean i guess, my English is not perfect.)

During this week, muscle twitching had rised in my father's body, it was on his arms, deltoids and some part of his legs now he also has muscle twitching in one of his hand and one side of his neck. This frighten me that if it means that bulbar muscles problems are going to be worse.

But it is very interesting that my father's speaking problem almost disappear. He was often clearing his throat for months and was speaking very nasal and hardly. Now he is almost speaking normal and voice quality and volume has increased, also don't need to clear throat. This seemed very surprising to me.

I could not find the information about that : If an ALS or MND patient has muscle twitching, can it disappear at some limbs or twitching doesn't stop until the waste of limb or being paralyzed ?

Also, in ALS there is no fluctuating and progression can be only in negative way as I know, how my father's speaking skills got suddenly better in a week than his last 4-5 months ? Do you have any idea ?

By the way doctor said to my mother , it can not be MS. They made Kennedy Disease test but results will come weeks later. EMG and symptoms
shows that lower motor neuron problem exists, so I guess it means it can not be PLS too, which is only upper motor neuron disease. I am confused because i can't find any other possible disease name other than ALS and Kennedy Disease, with same symptomes that my father have...

I would just like to hear opinions from Karen or any other forum member to discuss. Hope you guys share your opinions.

 

[KimT]

Regarding fasciculations. Mine started in my left bottom foot nearly five years ago. I can still walk. For about six weeks I had fasciculations on my face and neck, then they went away for nearly a year.

ALS is so different in everyone. No matter how much I try to gather information from others, my experience has not matched anyone perfectly. You just have to treat the symptoms and anticipate future needs.

My right leg has become weaker than my left and I suspect it was because I sprained my right ankle nearly three years ago and my calf and knee muscles atrophied because they weren't used for a good six months.

My best advice is to work closely with your doctors until a final diagnosis is made and then work with your dad to address his needs.

 

[KarenNWendyn]

The saying around here is “Hope for the best, prepare for the worst”.

Speech improving points away from MND. However, people with ALS/MND occasionally show transient improvement due to some amount of reinnervation (new nerve-muscle connections). But the improvements don’t last and are usually not as dramatic as what you describe.

Twitching can persist all the way to the end of life for a person with ALS or it can stop in a region once it is totally paralyzed. Twitching is so nonspecific that we really advise not to pay much attention to it.

I’m sorry that your father and your family are going through this and all the emotional upheaval that goes along with it. My best advice is to wait for the doctors to complete their assessment. Meanwhile, be emotionally present for your dad.

 

[Alsmess]

Thank you very much to both of you.
I will update the news a few weeks later after doctors make the diagnosis. As Karen said, I hope for the best but also strong enough to be prepared for worst.

 

[Alsmess]

Hello dear friends,
It has been 1.5 month since I open this thread.
All the tests had results a few weeks ago,, but doctors couldn't put diagnosis yet. But they wanted my father to use Rilutek and main suspect is ALS of course. Doctor said they will make the tests 1 month later, meaning the early October.
So, we will have the tests again, but I want to take your opinions in one issue...

My father sometimes tell us he smells a bad odour, like something burned, I guess it is called as ''scent'', a burned odour. He was telling this even before we thought he could have ALS, 3-4 months ago.

Now the question is that, when I search ''why someone takes a burned scent odour'' , I see that it is as a symptome of brain tumour or some other diseases like Parkinson, but can't see anything related with ALS. Do you have any idea?

 

[lgelb]

Some people do have changes in taste or smell with ALS. However, that is less often with early disease. I agree that and the voice improvement (is his voice still better than it was?) would make me still hope that it is something else, but I am assuming there have already been CT or MRI of his brain and spine?

Best,
Laurie

 

[Alsmess]

If we call his normal voice as 100% 6 months ago, he is now lets say at 70%. But his voice was 40-50% when he left hospital at first days. Now not so down but fluctuates between 60s-70s% from day to day.

His voice havent got worse in these last almost 2 months, since i open this thread. It is fully stable as i said, but definitely not worse than that.

Another issue: He was losing to my mother in armwrestling at left hand, in 2-3 seconds , 2 months ago. He started some acupunctur sessions, and now he can usually win vs my mother on left hand, but loses if he is very tired.This is also surprising. (My mother is not faking it to lose, we talk everything with her about my father. ) ( I dont do armwrestling to test his strength because i am too strong for him, my mother does the test easier with almost equal power.). So for sure, there is a little increase in his power but we dont know if it is psychological or not.

Twitching is same and still available in his body.

MRI , EMG , DNA and whatever tests else available have made already. They will make tests again 2 weeks later.

I know that it still look like ALS for a big possibility, but “a little increase in his left hand” and fluctuating voice and speaking skills make me doubt that if it can be something else than ALS. I wish...

 

[KarenNWendyn]

As a general rule, ALS does not get better. However, the body tries to compensate for loss of nerve-muscle connections (denervation) by laying down new connections (reinnervation). This is most likely to happen early in the course of ALS when there are still enough healthy neurons to do this. It can lead to transient functional improvements. These improvements generally aren’t maintained for long as more and more neurons die off and the remaining neurons are increasingly stressed trying to compensate for the dying ones.

Please let us know the followup after the next set of tests.