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Rani

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(Sorry for the long post, for all who don't want to read through my story, you can simply skip to paragraph "8" to review the symptoms and advise.
1) Hi, this is obviously my first post here. I am 27 years old male. I have a healthy semi muscular body, I was a good athlete in the past and took great care of my body which was very healthy until I constantly slowly poisoned and abused it in the past 6-8 years, by living a wild unhealthy lifestyle, from drinking and excessive smoking, weed abuse, etc... So I was obviously sucking the energy out of my body throughout these foolish, yet somehow fun years...

2) Keeping things as short as possible, life has been generously giving me one crisis after the other, but I always stood strong and believed that there is always a "bright day after a dark night", and attempted to enjoy life which became nearly impossible throughout the recent years. It turns out darkness leaves a clear scar in the soul ...Yet, I never expected things to become extremely dark...like the way it is now...

3) My father suddenly passed away with a heart attack in the middle of the night around 14 month ago, he was 59. It was the worst time for me to lose my father, my treatment for him in his last days was terrible, I was an angry son, I wouldn't take a single word from him without shooting back this and that, I was under incredible stress... I blamed him on many things and I guess he was holding way to much in his heart, that he couldn't hold no more.. I lost him and I was left with nothing but a plate full of regrets and further tears, and all the things I wish I have said or done, but never said and never done... another incurable scar in a soul full of scars...

4) Ever since his death, with the addition of a few severe events that were ongoing before and after his death, its like I was awoken to a different reality, I no longer tolerate seeing my friends or enjoy it, i no longer stand doing senseless things like drinking and wasting time in dark alleys,I no longer enjoy the things that should be enjoyed in life and I always felt like time was running out for me."which is true for all of us". My whole perception of the world, my interests, my thinking just shifted to a whole different rear view. I became completely obsessed with history, spirituality, seeking truth about humans and the world, alchemy, myth's, religious books and historical books, super advanced technology, you name it! Its like I am trying to find a world of fantasy to escape this reality I am in, However its good and important to mention for future people reading this, that I have learned about chemistry, physics ,biology and history in the past year more than I have ever learned and sunk in my brain for the past 15 years of education.

5) There is soo much I can write down about the effects of this change had on me, and my family and the people around me. I was always looked at like a lion,which is also my zodiac sign, a tough guy who always knows what to do,I also have two younger brothers who always felt safe having me, but now I am broken, a burden, most of my time sitting and seemingly doing nothing, I could feel the negative energy from my family and everyone around me, and I am simply not comfortable with their thoughts, but the truth is, I am simply more aware of how helpless, and how completely ignorant we are. I no longer care of being that lion, I am more obsessed with the things that could go wrong, like losing another family member, like focusing on having a clean pure spirit and preparing for an afterlife if there is any. Like understanding this world and ease my thoughts with faith or science whatever it is ...I simply had different point of view, and different agenda...while sinking deeper into fear of the unknown, and fear of more crisis's to come, I knew I just can't handle more, I will shatter!

6) So here comes the worst part, which brought me here to this forum, I should not forget to mention that after spending almost a week reading stories in here, seeing people fighting and helping each other, seeing people who struggled and then passed away as well, I think you guys are the real warriors of this earth, and I feel miserable that I have wasted my life doing useless things, while there was people actually enduring and going through such a terrible reality...I can't really express what I feel with English words I guess... It is unrealistic what you guys are going through! and I never thought I will be feeling all of this and going through this as well, while I am only 27 years old, hell if I had a second chance, there is nothing more I want than having a child and living a clean life...

7) So it all starts with anxiety attacks, lots of stress and stress symptoms, eventually causing health anxiety and becoming a victim of DR Google. I could feel something severely wrong with my body, yet I could not figure out what it is. scalloped tongue, joint pains , shortness of breath, left arm stiffness and pain, all types of syndromes which eventually turn out to be stress related, and some middle ear infection which I will not dwell into here for the sake of length of my post..

8 ) Not until very recently, after my body improving in the last 2 month by drinking daily herbal tea's ( a story of its own,which was really effective healing and knowledge btw), I start getting this extreme anxiety and shortness of breath again,(and I know that this is how my body communicated with me when its in trouble) in addition to the other symptoms that I will mention below.

-Overwhelming urge to cry, I would daily go deep in the forest all alone and just burst, could be many reasons as I have plenty of reasons to get that urge, but leaving my house at the crack of dawn just to relief myself was not something I normally do.
-I had the worst headache of my life consecutive for 3 days in a row ,Yes I didn't visit a doctor for financial reasons, I decided if it lasts a week, then its a must, but until then i should be patient, literally no pain killer was able to help me fully relax in these 3 days, the pain was so severe I would be paralyzed,I even got a high fever, the pain just slowly degraded after that. My fingers would feel numb at times during this headache which was awkward.
- At one night, my legs was shaking when I put force on them, they were so weak that I decided to sleep, my nerves must have needed rest, but my strength in my leg was back shortly after.
- I have a sudden low back pain which came out of the blue,the low back pain is constant and remains until today (been over 2-3 weeks now). Not very painful but annoying enough and makes me feel like I wanna stretch it away, but it wont go away.
- almost daily morning headaches, mostly on the right side of my head, not severe yet annoying headaches. If not early after I wake up, then a few hours after.
- My left forearm pain is back, only weirder and its not actually pain, its a dull weird pressure feeling, most commonly at the ulnar artery area, sometimes spreads to my the back of my elbow,makes me feel like i wanna massage or stretch/pressure it away, but of course it wouldn't go away.
-Twitching started under my right cage rib, for quite some time I Was feeling twitching in this area only,minor twitches at first for a few days that disappeared , then a week or so later, for around 48 hours, the twitching became temporarily incredibly severe as if there was something alive in there. now the twitching is all over my body, minor twitching anywhere you want and anywhere you can imagine, I even felt minor small twitching occurring on my forehead which was quite weird for me.
-no noticeable weakness in hand or legs or slurred speech, no noticable atrophy yet my muscles are loosened and already week due to years of lack of exercise, I am trying to make a starting point and monitor them now, but no major atrophy observed comparing with the other part.
-fingers and toes are still fully functional, Yet I think I am still at the earliest stage of the disease.
-hyperreflexia cannot be observed, but I can notice when I put one leg on the other, it kind of jumps or moves like its pulsing but I do not feel it. Its a minor pulse that can only be observed if you look closely.

- Constant ringing in my left ear, been around 1 month constantly ringing .

- Dehydration - I notice that I am getting quickly dehydrated, and my tongue is dry.



Why ALS?

Ok, so I am not one of the people who googles twitching and got directed here, Its my family history that brought me to ALS. so here comes the worst of the worst, as I was digging through my father's papers a few days back, I find out that I had 4 uncles, who died because of a disease that has no cure. Digging further into the story, I have one uncle who lost his life at the age of 27, one at the age of 32, one at the age of 52 and a female at the age of 53, all from ALS. my father and 1 more sister where the only two out of 5 that survived and lived ALS free... A secret that my father kept a secret,I guess he didn't want to remember these days where he lost his brothers and sister, and my mother decided that its best for me, or us, to live in the shade and get slapped in the face at one point...Maybe she was right, its not easy to live knowing there is a bomb inside of you waiting to explode, but also maybe she was hoping we would not get this gene, and expecting the best.
So now I am totally smashed up, I am 90% sure I am having the very early signs of this disease, there is still no weakness in my arms or legs, I am trying to set a starting point and test my current abilities and strength, to monitor any degradation slowly. my mental state is ****ed up and my economical state is even worst I am not able to have random tests and waste money on my health issues at this phase specifically, so that is another major problem I am having If I wanted to seek medical care relief, especially knowing that this disease is fatal and nothing I can do to cure it...

I apologize for the long post, Its the first time I feel vulnerable enough to post my problems online, and seek help at all,if online... So I just had to empty my cup a little bit, cause I know I am gonna need a lot, alllot and allot of more space cause I see no bright days coming...only dark nights..

I hope for everyone who is having this disease to be cared for, to have lived his life with no regrets, and right now, to truly focus on spirituality, because I can see no other way out of this world anyways, whether you have this disease, or you don't...

I am on a quest to find peace in my inner soul, ask forgiveness for all the sins I have done, and increase my faith, because faith is all we have, whatever type of faith that works for you, for me, its faith of the one true soul that we all come from , and the same soul we all return too..

Thank you for your time in reading this, perhaps my other quest right now is to find relief, and some sort of positive energy, its why I spent the last hour typing this post..
 
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Nikki J

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If your father did not carry whatever genetic defect took your relatives then you don’t. He was older than all of them when he died so it is extremely likely that he did not. Women tend to have older onset and the eldest list was female and 6 years younger. The eldest male was 7 years younger.

See a doctor please but I do not see anything that makes me think ALS is on the table at all
 

GregK

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Sorry, I cannot read that much text in one sitting, but I wanted to clarify one thing:
I find out that I had 4 uncles, who died because of a disease that has no cure. Digging further into the story, I have one uncle who lost his life at the age of 27, one at the age of 32, one at the age of 52 and a female at the age of 53, all from ALS.
Are you assuming that they died from ALS?

Were there any actual diagnoses from doctors?
 

lgelb

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Rani, as Nikki points out, your family history does not support the idea that you have familial ALS, and your symptoms don't support any ALS with which we are familiar. I encourage you to find a friend with some medical background or a free/sliding-scale clinic to reassure you and point you in a direction that can help you find relief.

Best,
Laurie
 

Rani

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Sorry, I cannot read that much text in one sitting, but I wanted to clarify one thing:

Are you assuming that they died from ALS?

Were there any actual diagnoses from doctors?
Hi Greg, yes , they died from ALS.

@Nikki J

My knowledge that a gene can be carried and remain dormant, or "reduced penetrance"

I will gladly accept that I am having a mental breakdown but the fact is I am quite confident my mind is clear, clearer than ever if that matters, and the way my body is feeling right now, its only a matter of a month or two before I report one of the symptoms you guys believe in...

Thank you Nikki for reading my post and I hope you are correct, but I am accustomed to the fact that my senses for the worst, never seem to fail me...
 

Nikki J

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It seems to be a highly penetrant gene with so many siblings affected. It is more likely your dad won the 50 50 lottery and escaped.

And I still say you are not describing our experience of ALS. Anyway it is not up to us to believe or not believe for you to find out. If you are so sure find a way to see a doctor. We can only give you our opinions. But consider there may be something the doctors can fix

For reference I have SEEN 5 members of my family die from this
 
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Rani

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Rani, as Nikki points out, your family history does not support the idea that you have familial ALS, and your symptoms don't support any ALS with which we are familiar. I encourage you to find a friend with some medical background or a free/sliding-scale clinic to reassure you and point you in a direction that can help you find relief.

Best,
Laurie
Hi Laurie,
I have seen many of your posts in here and I would like to gain this opportunity and thank you on behalf of everyone you have supported in this forums. May your husband rest in peace, he was lucky to have a caring person like you as his wife to take care of him in his final days, I am sure that meant allot to him...

I will try to restrain myself from spamming this thread, I have so much I would like to say to each and every one, like I said to me at this point, people in this forums are true warriors. But I will keep this thread focused and hope we just nail the important points.

I guess only time will clarify further, but in the meanwhile, I hope people who post here post with biological details according to the symptoms I have mentioned that can rule ALS away, other than that I find hoping for the best and considering a low percentage of infection due to my age etc... is something I do not want to hear anymore..

I have been hitting that 1% dark chance in every aspect of my life now and sentences or assumptions of low probability is not something that can help me at this point, that is if your aim is to help me..

@Nikki
Man, I can't imagine how difficult that must have been, I truly hope your 5 family members rest in peace, and hope you maintain the strength that you are currently holding and that is keeping and helping you wake up in the morning...
 
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Vincent

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Completely separate from the family history, nothing you describe sounds like ALS. All symptoms you mention start with It feels. ALS even in family variants has no feel. No pain, no numbness, no feels weak....... I feel as I felt before diagnosis, I just have muscles that do not work. The fact your father did not have the gene for this means he could not have passed it on to you. You mention dehydration, there's something that could be causing a lot of symptoms. I am not a doctor, I don't have your file to look at your tests. I just see nothing that looks like ALS.
Vincent
 

Rani

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Good morning guys, and thank you for your replies. I will keep you updated on any important news about myself. I will also remain around here in the forums with you guys and hope I can provide any future support to people in here.
 

Nikki J

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Please note per forum rules undiagnosed people who do not have ALS experience as a CALS etc are not allowed to post except on their own threads. This is a support forum for PALS.

You had family members die from ALS but you do not have direct experience.

This and other issues can be learned about in the post near the top of this subforum entitled Important read before posting
 

WendyWooG

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Rani
Go to your doctor, explain your family history and your concerns and ask for a gene test. I was diagnosed at forty seven years. A few months ago my mum was diagnosed aged seventy five years old. Neither I or my mum's very experienced doctors feel this is familial als. The reasons are too numerous to go into here, but! We are waiting on gene test results to reassure my children. It's a simple way to put your mind at rest.

Wendy
 
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