Great to see a new content creator on here sharing their personal medical journey - however difficult and heartbreaking it might be - so that others may feel less alone ❤
Brook Eby is a good ALS woman to follow. She is very positive and upbeat. I also followed a woman named Kathy Hall who passed away about 3 weeks ago. She was very sweet and I know she was ready to meet Jesus.
I'm someone who has suffered personal loss because of ALS. My classmate Steve just passed away last month. He was the 4th person I know. I'm so glad you started this channel. ALS is not as rare as they would like people to think. The more faces representing ALS, the better. May God bless you and keep you. You are in my prayers 🙏 ❤️ Jan
Hi Beth, we worked together a long time a go. It's lovely to see you pop up in my feed, I just wish it wasn't because of ALS. That said, I remember how strong, positive and hilarious you are. This is a journey you will do with grace and hope, while inspiring others. Every Blessing and you have my prayers ❤
Thought I had locked myself out of the house, so I rang the doorbell. My husband answered and said the door wasn’t locked. My thumb was too weak to depress the latch. That was one of my first symptoms.
@@bethbrock2797 It started in my right leg in Spring 2021 and spread to my left leg within six months. I started falling, but managed to compensate and continued walking, but mainly in my house. I was diagnosed with MND in June 2022 by a neurologist after ruling out mimics and having a positive EMG. I was undiagnosed four months later over a zoom call with an ALS specialist. She said I should have been in a wheelchair by then. It spread to my arms and hands. Now, muscle atrophy and weight loss (40 lbs). I’m still trying to get a diagnosis. I’m awaiting a muscle biopsy, genetic testing and more blood test results. Whatever this is, I just need to know. Stay as positive as possible and best wishes as you navigate this terrible disease.
Was there anyone in your family that had ALS? Maybe they didn’t know they had it so it may not have been diagnosed. ALS is genetic with a 50% chance of next generation members having it so there may be someone in your family (Mom, Dad, Aunt, Uncle) that you might remember that was suffering. Thank you for your bravery to discuss this serious illness. God Bless you.
I’m 3 years symptoms on set 1 year since diagnosis. I’m 40, it’s amazing how many excuses you make up when you start noticing changes in your body. I’m limb on set, mine started in my legs & balance. I was brushed off for 17 months by doctors because they thought I was too young. They thought I was just a tired mom. It took a long time to get my diagnosis and I ended up getting three Opinions. It’s in my hands & respiratory now too. I can’t walk or do anything I used to do, I guess I’m lucky it not spreading faster. I also was diagnosed with clonic spastic seizures which is upper motor neuron symptoms jacked up on steroids. It’s sucks my sister everyday something changes & you have to stay ahead of the disease. Making your home accessible surrounding yourself by people that can truly help you and care for you because it can happen before you realize it the help you’ll need. I’ve had to find a new way to be the mom to my two boys my husband and I relationship we’ve tried to keep romantic, but he’s also become my caregiver. I do strongly believe that all ALS someday they will figure out is all genetic. I don’t think they’ve gotten that far in the diagnosing cure process. My grandma passed from ALS in 1994 and all my genetic testing came back negative. But I can’t help but think I have a genetic marker that hasn’t been found yet. I’m sorry you and your family will be going through this. It’s not easy and some days just totally suck but then some days are a little bit better. I wish you luck.🩵💙
Thank you so much. I enjoy hearing from others. I feel a special compassion for you because you have children. I pray they can feel support from your extended family.❤
Hello there. Just found you on here and will be looking forward to seeing more. Thanks for the info. I’m four years into my progression and still don’t have a for sure diagnosis. It appears to be ALS or PLS.
ALS is caused by various fungi that can enter the body in several ways. Often times the infection begins in the upper regions of the nasal cavity infecting the olfactory nerve. From there, the infection slowly makes its way into the frontal lobe (motor cortex) which is what causes the disruption to signals to muscles. The parietal lobe is often unaffected because of the central sulcus - a physical structure in the brain that separates the frontal and parietal lobes - that is why most ALS patients have no problem with sensory (feeling); the infection cannot cross into the lobe to affect sensory neurons. Another clear indicator that the disease is caused by fungal pathogens is the increased level of CHIT1 proteins. CHIT1 is a protein released by mammals to fight pathogens with chitin in their cell walls such as fungi. These fungal infections are known as "insidious infections" meaning there is no sign of infection until you have serious symptoms such as muscle weakness. To treat the disease, heavy antifungals are required for long periods. Most doctors are not aware this is now a treatable disease and are still approaching it with conventional wisdom. If you have been diagnosed with ALS or a similar neurodegenerative disease, be sure you do significant research on fungal infections and their treatment. It is important also to note that companies in the US and Europe make billions annually selling equipment to patients with this disease and others like it.
I am going down the ALS currently as I have constant fasciculations in my calves and an abnormal EMG. So far no weakness that I know of but I'm seeing a neurologist next week. Did you ever have fasciculations in your calves?
@@bethbrock2797 thank you for that response. Do you know how long before fasciculations start that you'll have other symptoms? Or can you have just fasciculations for several months with no other symptoms?
Great to see a new content creator on here sharing their personal medical journey - however difficult and heartbreaking it might be - so that others may feel less alone ❤
Thank you!
Sending many Blessings to you, please stay strong in this journey😘
Thank you for sharing . Thank God Watch over this Lady ..
Brook Eby is a good ALS woman to follow. She is very positive and upbeat. I also followed a woman named Kathy Hall who passed away about 3 weeks ago. She was very sweet and I know she was ready to meet Jesus.
I'm someone who has suffered personal loss because of ALS. My classmate Steve just passed away last month. He was the 4th person I know. I'm so glad you started this channel. ALS is not as rare as they would like people to think. The more faces representing ALS, the better. May God bless you and keep you. You are in my prayers 🙏 ❤️ Jan
Thank you Jan. You are right. It is becoming more common. I am sorry for your losses.
Just found you and following now. My brother in law passed from this and I'm sending you so much love and comfort and strength.
Thank you so much❤
You are NOT alone. And we WILL find a cure! Stay strong!!!
❤thank you
Praying for God's healing hand to be upon you...bless you in this journey.
Thank you sweet person.
God ain't healing this.
Hi Beth, we worked together a long time a go. It's lovely to see you pop up in my feed, I just wish it wasn't because of ALS. That said, I remember how strong, positive and hilarious you are. This is a journey you will do with grace and hope, while inspiring others. Every Blessing and you have my prayers ❤
I wish there was a picture to help me know who you are. Thank you for your kind words friend 😊
Thought I had locked myself out of the house, so I rang the doorbell. My husband answered and said the door wasn’t locked.
My thumb was too weak to depress the latch. That was one of my first symptoms.
How long have u had ALS?
@@bethbrock2797
It started in my right leg in Spring 2021 and spread to my left leg within six months. I started falling, but managed to compensate and continued walking, but mainly in my house. I was diagnosed with MND in June 2022 by a neurologist after ruling out mimics and having a positive EMG. I was undiagnosed four months later over a zoom call with an ALS specialist. She said I should have been in a wheelchair by then. It spread to my arms and hands. Now, muscle atrophy and weight loss (40 lbs). I’m still trying to get a diagnosis. I’m awaiting a muscle biopsy, genetic testing and more blood test results. Whatever this is, I just need to know. Stay as positive as possible and best wishes as you navigate this terrible disease.
That is hard not knowing. Take care
I’m in Georgia too.
Was there anyone in your family that had ALS? Maybe they didn’t know they had it so it may not have been diagnosed. ALS is genetic with a 50% chance of next generation members having it so there may be someone in your family (Mom, Dad, Aunt, Uncle) that you might remember that was suffering. Thank you for your bravery to discuss this serious illness. God Bless you.
No one else. 10% is genetic
I’m 3 years symptoms on set 1 year since diagnosis. I’m 40, it’s amazing how many excuses you make up when you start noticing changes in your body. I’m limb on set, mine started in my legs & balance. I was brushed off for 17 months by doctors because they thought I was too young. They thought I was just a tired mom. It took a long time to get my diagnosis and I ended up getting three Opinions. It’s in my hands & respiratory now too. I can’t walk or do anything I used to do, I guess I’m lucky it not spreading faster.
I also was diagnosed with clonic spastic seizures which is upper motor neuron symptoms jacked up on steroids.
It’s sucks my sister everyday something changes & you have to stay ahead of the disease. Making your home accessible surrounding yourself by people that can truly help you and care for you because it can happen before you realize it the help you’ll need.
I’ve had to find a new way to be the mom to my two boys my husband and I relationship we’ve tried to keep romantic, but he’s also become my caregiver.
I do strongly believe that all ALS someday they will figure out is all genetic. I don’t think they’ve gotten that far in the diagnosing cure process. My grandma passed from ALS in 1994 and all my genetic testing came back negative. But I can’t help but think I have a genetic marker that hasn’t been found yet.
I’m sorry you and your family will be going through this. It’s not easy and some days just totally suck but then some days are a little bit better. I wish you luck.🩵💙
Thank you so much. I enjoy hearing from others. I feel a special compassion for you because you have children. I pray they can feel support from your extended family.❤
You are beautiful, thank you for sharing your story with us.
Thank you for watching
Same thing happened with clipping my nails. I thought are all of my nail clippers this dull?
Hello there. Just found you on here and will be looking forward to seeing more. Thanks for the info. I’m four years into my progression and still don’t have a for sure diagnosis. It appears to be ALS or PLS.
I'm so sorry. I try to focus on what I can still do.
ALS is caused by various fungi that can enter the body in several ways. Often times the infection begins in the upper regions of the nasal cavity infecting the olfactory nerve. From there, the infection slowly makes its way into the frontal lobe (motor cortex) which is what causes the disruption to signals to muscles. The parietal lobe is often unaffected because of the central sulcus - a physical structure in the brain that separates the frontal and parietal lobes - that is why most ALS patients have no problem with sensory (feeling); the infection cannot cross into the lobe to affect sensory neurons. Another clear indicator that the disease is caused by fungal pathogens is the increased level of CHIT1 proteins. CHIT1 is a protein released by mammals to fight pathogens with chitin in their cell walls such as fungi. These fungal infections are known as "insidious infections" meaning there is no sign of infection until you have serious symptoms such as muscle weakness. To treat the disease, heavy antifungals are required for long periods. Most doctors are not aware this is now a treatable disease and are still approaching it with conventional wisdom. If you have been diagnosed with ALS or a similar neurodegenerative disease, be sure you do significant research on fungal infections and their treatment. It is important also to note that companies in the US and Europe make billions annually selling equipment to patients with this disease and others like it.
Prayers 🤲 for Us 🙏 all
Yes ❤
❤
How are you now dear friend
Thank you for asking😊
I need to post a video.
Ankles weaker and voice worse but ok overall.
Can you tag who you spoke to that helped you find the neurologist that specializes in asl?
@Ruth_T I called ALS of georgia and spoke to ROBIN RACOFF. It may now be called ALS united of georgia
I am going down the ALS currently as I have constant fasciculations in my calves and an abnormal EMG. So far no weakness that I know of but I'm seeing a neurologist next week. Did you ever have fasciculations in your calves?
*als rabbit hole
@peggyhaukap5554 -you can have them anywhere. I think of it as your muscles are starting to short out but that might not be totally accurate.
@@bethbrock2797 thank you for that response. Do you know how long before fasciculations start that you'll have other symptoms? Or can you have just fasciculations for several months with no other symptoms?