Concerned...

[mihu]

True...

 

[Atsugi]

Why the sad face? You have been thoroughly cleared of a fatal disease. Time for a happy face.

 

[mihu]

Because as you stated, I know that 99.99% I waste people time here. But please believe me, my soul and toughs are with you, everything that came up in my mind stais with my DAD memory. Each time I twitch, I am going backward in 2004 and I can't get out of my mind a sad day when he came back from work and he was angry that he tripped in the tram ( When he was coming back to work ) cause he decided to still go to work 1 year after so he can buy me the first computer, for what? For developing a hypochondriac, ADHD person which wastes people time and did actually nothing, My child was my single good thing I ever did.

At this point, my mind is working at probably 200% percent from different phases, combining work with anxiety, combining positive and negative forces.

Because of this I developed an obsession and right now, If I don't have it, I want to use all my contact, companies that I'm working and donate for the research. I had a dream in which someone or something was saying to me "You don't have it, beat it". And right now I want to start doing something for it, even if I don't have it, but my DAD's memory, the people here, the movies I saw on the internet makes me cry and I feel so incompetent that I can't help others at leas, instead, I'm taking their time here...

I understand that this is not a forum where I should find someone just to talk with, It's just that I can't get the peace of mind now and as described, probably what I'm dealing with now it's even much horrible that any form of MND.

Sorry for everything. I will try to respect you all and everything you said so far!! I will only update with good news. Thanks again for the positive energy, and promise I won't reach the 5 pages thread ( Just saw that this is a trend for super-anxious people here ) ...

As a caregiver, I've been there, as a possible future PALS, I will probably be again... life is a lottery anyway

 

[mihu]

Ah, and a note. I just don't want to excuse myself for my anxiety reaction and my stupid questions here, but I woke up stressed because today (2nd of September) my father should have been 68 years old. And he should be playing with his granddaughter now. Life is so harsh and it doesn't matter about me now. I will just try to not disappoint his memory, or his love for me. If he is still around ( somehow ).

Today I had more spasms that I ever had so far, all over the place. I opened a bottle of scotch in the memory of my dad.

I will do my MRI on Tuesday, and stop going to doctors any more. When I will trip or I will not use my hand anymore probably I will come back here.

As a matter of fact, speaking about a donation, please give me the best advice on where it's better for me to add some funds . Here ( Forum ), ALS Research ? ALS guardian angels ? I can spread them all but I would ask you first because I want to know where I should start contribute better.

Thank you!

 

[lgelb]

Life is harsh, yeah. And often not fair. But you have something your father didn't have: the opportunity to live a life free of ALS. What you do with that opportunity can honor his memory or wallow in it. The choice and consequences are yours.

We repeat: if it takes counseling, drugs and/or just time to move past your fear, it is worth it, to have the life that you have dreamed about. But you can't do that here.

 

[mihu]

I want to start donate, research and start contributing on beating this disease. Everything I wanted to do in my life so far I did. An right now I want to invent something which can beat this monster. I don't care about my future any more and/or If I have if or not.. my focus now is to do research and use all my powers. Life is short anyway and I am sure I can do and get out the best of me. Thanks everybody here and please don't forget to let me know where is the best direction for pushing funds please.

 

[Atsugi]

Up at the top of this page, click on the big word "ALSforums" and it will take you to the front page. In the top right corner is a big red "donate" button. Put a hundred dollars in the kitty there and it will help this website directly help people with ALS and their caregivers by giving them a safe place to share their concerns and advice and emotional support.

 

[mihu]

Thanks Atsugi.
Did it.

Proof link, for some reasons I can't attach info so I'll attach the proof via a link https://ibb.co/n00qda

And there will be more I promise. And more involvement from my side soon.

Thanks again a lot for your time good people. I have no words to thank you for your time and helping a lot of anxious people here not only me. You deserve everything.

 

[mihu]

Today's update:

It seems that my MRI Revealed a small 5mm bulged disc on L5, and this is consistent with the EMG findings according my doctor..
Image : https://ibb.co/evqiZF

I guess this should be reassuring as we found something which is well known to cause pain and muscle twitches.
The muscles where I'm twitching I think are consistent with L5-S1 region.

Toughs?

 

[mihu]

Update.

Today I did the MRI and the result is :

The bulge is L5/S1 yes.
You have a nerve impingement and radiculopathy

This seems consistent with the EMG findings.
So that's why the twitches and spasms I see.

Let's see how it goes. This is much reassurance for the moment

In the end I just want to thank you all. I will still be around this forum and I will try to research, see how I can contribute, donate, etc for this fatal thing so I can help people with it in the future.

 

[mihu]

Sorry for bothering people again. I'm coming with an update from the doctor which did the full MRI interpreation.
What I want to add is that alternatively with the twitches in the calves, I am also having times when I experience sever spasms (no cramps). I also have sensation of numbess somtimes but it's so mild (I know numbness and pain it's not associated with ALS and that's a good sign).

I would be happy to ask eventually people like jaxxon if these were some same symptoms.

Doctor's conclusion

1) There is DDD (degenerative disc disease) at L5-S1 level
2) Upper lumbar level too there is minor DDD, but most prominent at L5-S1 level as mentioned under #1 above
3) There is a small disc bulge at L4-L5
4) There is another disc bulge at L5-S1 level (this could be herniated too, but without axial cuts it is difficult to comment on this)
5) There is some reduced height of L5-S1 disc which is also part of the DDD
6) The spinal nerve root at the L5-S1 level may have been pinched (or compressed) little bit (but without axial cuts it is difficult to comment on this)
7) MRI films consistent with EMG findings.

You certainly have sufficient findings in your lumbosacral mri scan and this certainly indicates what you are having is the spinal problem, but definitely not MND/ALS
So this once again confirms you are not a case of MND/ALS

@jaxxon or whicever is here. Should I trust that I have Radiculopathy and the pinched nerve can cause such cramps?

I still have occasional twitches in the belly, triceps and everywhere but they are still constant.

Monday I will have a 1.5 month followup with my neurologist (The old guy) and do another clinical exam. I will update you with my progress.
Please let me know about the opinions.

At least if it will end up that I'll be 100% cleared of MND we can use my example and jaxxon ones for the other people which might have similar things.

Thanks again!!

 

[Nikki J]

Your doctor said definitely not ALS and you have an explanation. Do you know how lucky you are? I had a slightly abnormal MRI. My neuro told me it wasn't the issue but I went and saw the neurosurgeon who very kindly showed me the mri pictures , said there was really nothing wrong with my back and I needed to go back to the ALS clinic. I left the office and cried

Everyone here has prayed for an explanation like yours. There are people who cried when they were told no brain tumor ( and not happy tears)

If you wish to communicate with other dihals please do it through visitor message. The post we allowed was a one time exception and these threads are NOT for DIHALS conversations

 

[mihu]

Sure. I am doing this through private messages. The reason I posted the complete details and other symptoms/progress right now it's not because I am anxious as I exhausted all the possible answers. As I said, I just want to use my story as an example which, at your decision you may or may not show to other people which will probably present the same questions as me here.

I also want to start helping and will still be around the forum, but muted, or If I'll post something on the DIHALS I will try to stick with only good and valuable information.

Thanks again for everything!

 

[ShiftKicker]

Hi Mihu- I think the issue here is that the DIHALS section is a place where people come to get very specific questions answered. It's not a social platform or a place for people with health anxiety to continue posting after receiving patient and informative answers from the volunteers with ALS who provide feedback. The entire forum is an incredibly unhealthy place to be for those who do not have ALS, as it only reinforces fears for those tempted to stick around after being reassured they do not have ALS. It is strongly discouraged, in fact, regardless of the good intentions of those who seek to remain after being cleared of ALS.

 

[mihu]

Quick update. Yesterday I had a follow up with my neuropshychyatrist. He didn't done any clinical exam but he just spent one hour to discuss with me. I will continue treatment with XANAX. He was happy that he seen some improvements ans he said a next follow up.in 3 months. He doesn't give s dime on the twitches. As long as weakness is not present he said is not worth investigating more nor any other exams. He said that after 50 years in practice he can spot a patient with problems by just looking on it and I must trust him.
He spent a lot of time counselling rather that doing any tests as he mentioned that he was concerned more about my mental situation than the neurological one.

I still have twitches, newely vibrating senzation in the leg and occasional twitches that moves from eye to elbow and different locations but I won't pay attention to those.

I hope that this might be the right pathwhay for the moment. Hopefully I will stay this way and see how I can help others and not becoming a PAL so soon. I would be happy if I'll get around 50 if I can choose as I want my daughter to be with me