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JTorm

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Jun 7, 2013
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Learn about ALS
Country
PTY
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Panama
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Panama
Hi,

I joined this forum in the early days of june and I'm glad i did.

Despite on July 16th, being told "Suspected motor neurone disease" by a regular neuro (not an ALS specialist) my profile remains still, "i'm in the process of being diagnosed" as i have not had a definite answer yet.

I'm not going to talk about symptoms or such, but about coping with some things as I already know coping with losing normal body functions is Hell.. (If you want to comment on this, it's OK)

But i want to talk mainly about the family members pain. How as a PALS you cope with that feeling of, I wouldn't call it guilt, but it's somewhat similar.

This thing broke me today.

I was having a good week, despite all issues... I was calmed and relax, but while eating with my mom and she seeing me at how slowly i'm doing that lately, put her in a sad state... Then she was looking at my ankles noticing some difference.. and she went to her room.. I know she was crying and really concerned...

There is no single person in the world that i love more than my mother... and that event broke me today...

Yes, i'm not DEFINITE but I'm angry, frustrated and crying, because i cannot stand the fact that i'm the cause of my mother sadness...

She is a religious woman; I do too, but not as much as her and I'm starting thinking God abandoned us... and I know i shouldn't say that... but its plain HARD...

So, i don't know what to say, how to act. Would appreciate some advice...

Jon
 
Hi Jon,
I'm so sorry. We should ask some family caregivers. I definitely feel something akin to guilt. I know my mom is on antidepressants now, and she wasn't until the diagnosis. And my husband goes to therapy. Would she be open to either of those?
 
Hi jon.
My heart sank reading your post,your so young to be going through this.
It is heartbreaking what pals suffer but equally for relatives and friends who have to watch helpless to do anything.
As a mother of a son your age I too would find it upsetting .
You can not help being ill so theres no guilty feelings to be had...its something out of your control.

My faith is what keeps me going,trusting that god will do away with all death,sorrow and everything else that's bad in this world in his new kingdom.
God loves and cares about us all,bad things are not his doing but a result of our imperfection.

My practical advice to you would be get that second opinion from an als specialist asap.
Ask your gp to make enquires about this but you may have to travel a distance.
Also ask your gp for something for your depression,you clearly are depressed and this is nothing to be ashamed about.
I am very worried about your mental health more than physical especially reading a couple of your other posts.
Please promise me you wont do anything stupid,please see your gp asap for help.

I will keep you in my prayers sweetie.
 
Oh and You don't Need to act any different. She is still your mom!
 
I got on anxiety meds and just started Celexa. It's keeping me from bursting into tears every time I hug my 5 year old daughter.
 
This is a newly diagnosed forum. You have not been diagnosed with ALS/MND. Not buying your (sad) story.
 
@Txgirl,
I'm not selling anything, nor i have a definite diagnosed. I said i was suspected. If you feel mad about that, i can't do anything about it. You are giving me the wrong impression that you feel good about yourself when people get a definite diagnosed, which i find that awful.

I don't know about you, and again, i'm not diagnosed definite, But i'm already working my a'ss off with some PALS to do a work many are not doing, as i do not want any other person to be diagnosed with this disease.


Thanks Ashley and Caroline, (i do promess i'm not doing anything stupid) It's just that i find it unfair that good people have to go through all this. I'm for instance, always angry with peoples tragedies, so imagine how angry i'm right now because of all this..

It's not fair at all.

Jon
 
Jon, You clearly need help but this is not the place that can beneficial to you.
 
@Jon, Do you have ALS specialists there?Did your neuro refer you to anyone else? You should definitely see a psychologist yourself. No one should have to deal with this alone. I mean, you're on the forum, but we can't prescribe drugs, or get you equipment.

@Txgirl, This is not a case of self diagnosis. Jon has been through the necessary tests and is now dealing with the fact that an actual neurologist suspects MND. Have a little empathy. No need to be rude. In my opinion, he's posting in the right place.
 
@Jon, Do you have ALS specialists there?Did your neuro refer you to anyone else? You should definitely see a psychologist yourself. No one should have to deal with this alone. I mean, you're on the forum, but we can't prescribe drugs, or get you equipment.

@Txgirl, This is not a case of self diagnosis. Jon has been through the necessary tests and is now dealing with the fact that an actual neurologist suspects MND. Have a little empathy. No need to be rude. In my opinion, he's posting in the right place.

I will have to disagree with you on that. This is a case of self diagnosis. Here are some quotes from dear Jon himself.

"NCV results were: neuropathy (nerve entrapment) cubital and carpal syndromes in both arms...

EMG results were: s1 root irritation bilateral, denervation external calf bilaterally... polyphasic motor unit potentials in peroneous longus lateral... As protocol they also needle checked my back (paraspinal and one of my trapezius) with nothing abnormal..."


"Guess what? my first neuro didn't diagnosed me with ALS (almost 4 months ago), yet in a recent appointment with another neuro, i got a possible ALS diagnostic... Which one do i believe? Are my Neuros incompetent? How come from a leg cramp (câimbra), it progressed so fast to a dragging foot and on top of that, i developed swallowing issues? Did i have this, long time before as my neck always hurt?"
 
@Ashley,
Unfortunately, there are no "ALS specialists" in my country. To answer your question, As i didn't feel satisfied with my first neuro/internist, I did get referred to a neuro that had some experience with neuromuscular diseases, and as a result, the possibility of ALS was put on the table.

I hope the guy is wrong but he stated clear facts about why he didn't believe my back problems were the real cause of my issues.
He wasn't 100% sure that i have ALS but at least he told me, he will be checking my case with another colleagues.

Seeking another opinion is a most but i'll get another app with him, in a couple weeks just to see what he can conclude.

@Txgirl,
Don't you worry lady, If i unluckily get diagnosed, you will be the first one to know. ;)

Jon
 
It is not the matter that god has abandoned you. A problem comes into very person life. But a good person is that who fights with that disease .A disease took away a person to stress. So find a correct method how to treat that particular type disease. Try to do yoga practices to remove such stress. Patience must be needed if you want to recover.
 
This is a newly diagnosed forum. You have not been diagnosed with ALS/MND. Not buying your (sad) story.

Jon is a young man with clearly something going on and I have told him I do have doubts that it is als.
However he is clearly depressed and such comments don't help....I have suffered from clinical depression most of my adult life so know.
 
Jon is a young man with clearly something going on and I have told him I do have doubts that it is als.
However he is clearly depressed and such comments don't help....I have suffered from clinical depression most of my adult life so know.

Correct me if I am wrong but isn't this a forum for ALS/MND? If this forum is for ALS patients to coddle & console people that come here just because they are depressed & not suffering from ALS, then I am clearly in the wrong place!

I come here for support because I have ALS. I am depressed because I have ALS! Why would I want to come here to console someone that is just here because they are a hypochondriac and have drove themselves into depression. There are pills for depression. Take one for God's sake! I wish there was a pill to cure ALS.
 
Hi Jon, I truly understand your anxiety and concern over your symptoms and what they mean. I have been on a very difficult path to diagnosis too, and though they now think it's PLS, they're still not sure. Progression is so unpredictable and unsteady which adds to the anxiety. I hope you get answers soon, and that you have good support around you.
I wish you strength and peace.
Linda
 
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