My ALS diagnosis and symptoms. Part 1

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  • Опубліковано 16 лис 2024

КОМЕНТАРІ • 148

  • @tammyadrian4361
    @tammyadrian4361 Рік тому +5

    Thankyou for sharing this.I’m also going through the process now of trying to find out what’s going on with me .I have many of your symptoms.I go for my EMG next week with the neuromuscular specialist.
    It’s really helpful to see your video I hope you are still doing well ❤️You are amazing

  • @kalekas6332
    @kalekas6332 6 років тому +17

    Praying for you. My grandmother just got diagnosed, and I️m doing research. Thank you for this video. Praying for a cure. You are so young I️ can’t even imagine what you are going through and how you feel.

    • @alexplayz1084
      @alexplayz1084 6 років тому

      I think I might know how ALS works

    • @alexplayz1084
      @alexplayz1084 6 років тому +1

      There are these things in your body called EMTs and there might be an infection that bitch in your body that will affect those EMTs in those EMTs sent messages to your body to help you move that help your spinal cord to get there

    • @sabrinam.3576
      @sabrinam.3576 6 років тому

      What is the first Symptome from your grandmother

    • @badcarma69
      @badcarma69 6 років тому

      Merry Christmas, here's the cure: ua-cam.com/video/jpsdthM7EzE/v-deo.html

  • @arlinaoutcalt1521
    @arlinaoutcalt1521 6 років тому +17

    I am so glad you did this! I want to be informed on what you are going through, so I understand more.

    • @boutofthebox9758
      @boutofthebox9758  5 років тому +5

      I'll be doing another video soon. I've been busy enjoying life!

    • @sharongeorge4860
      @sharongeorge4860 4 роки тому

      Am Sharon George, my dad was diagnosed with ALS early this year march to be precise , and i was so confused because i love my dad and i wouldn't want to loose him so soon so i decided to look for a possible solution to get rid of this ALS despite knowing it has no cure as advised by the medical doctor, everyday my dad's heath depreciate and keeps loosing weight and strength, a friend advised me to try Dr James ALS herbal formula that she used it to cure her dad's heart disease and i was reluctant about it until after a second thought i decided to give it a try because no harm in trying and immediately i contacted him he assure me that my dad will be cured within few weeks of medication and he sent me the medicine and i applied it on my dad as advised by Dr James and within 6 weeks of using the herbal formula my dad was cured and now my dad is free from ALS, i went to the hospital that said there was no cure to ALS and informed them about my dad's healing and they were surprised. here is the contact email ( jamesherbalformula@ gmail. com ) also reach him on his whatsapp number via +2349057856543 don't hesitate to reach him Regards.

  • @juliemarvin101
    @juliemarvin101 5 років тому +7

    God bless you Sister. I have been having all these symptoms for many yrs now it's getting more intense and I can not warm up my hands and my feet. My feet are burning at the moment because thier so cold. I have 2 aunt's that have passed from als so I'm very scared to go back for the results of the nerve conduction test. I'm praying for you. Maybe xx our can whisper my name in your prayers tonight. Thank you for sharing your story

    • @malikafaq9161
      @malikafaq9161 3 роки тому

      Plz what reasom of you plz tell plz

  • @noobnoob7499
    @noobnoob7499 3 роки тому +3

    Hey you're such a strong person and I believe in you, could we get an update on you? You haven't posted in a while.

  • @jghjgh6481
    @jghjgh6481 6 років тому +8

    Hey. Just watching your video and wanted to tell you that you are an amazing person. I hope you are doing well and enjoying life. You are beautiful and inspirational.

    • @boutofthebox9758
      @boutofthebox9758  6 років тому +2

      Jgh Jgh Thank you so much for your sweet words.

  • @pandurangaraosripathivitta1017
    @pandurangaraosripathivitta1017 6 років тому +10

    Keep up the good job you are doing. I hope, Definitely a cure for ALS is not far away.May God bless you.

  • @TALIS4ANGELS
    @TALIS4ANGELS 3 роки тому +5

    Interesting post, thank you for sharing. I’m starting to wonder about having ALS myself. My body constantly twitches to the point that I can’t even sleep anymore, my feet lock up painfully, and my doctor stated this last week that my muscles are deteriorating. I also had ANA tests come back positive for Lupus but then it turned out to be a negative/positive so the fact that you said that makes me wonder even more. All of my blood test so far have been negative for anything else. I’m waiting for further testing and I know it will be a long process but I’m hoping for answers soon.

  • @themoonisaspacestation
    @themoonisaspacestation 2 роки тому +1

    Im going through the same process, 24 years old all negative hope you are well..

  • @elizabethconroy7665
    @elizabethconroy7665 3 роки тому +1

    Hello dear
    New Subscriber here from
    Amman Jordan Middle East
    Thanks for sharing and positive information
    Bless you

  • @iamessence6268
    @iamessence6268 5 років тому +6

    You are so lucky. Well, try to enjoy life. 👍💗

  • @saborguerito
    @saborguerito 3 роки тому +2

    so to date how long have you lived with ALS from the time you started getting symptoms?

  • @JahoSelamaj
    @JahoSelamaj Рік тому +1

    Thank you for sharing this, Im going through the fear of ALS right now I have a persistent tightness on my right lower leg that is just not going away and random muscle ywiches through the day that usually last half second or few seconds rarely and happen few times through the day.I had issues with my dight leg for 1-2 years at least with tiredness and tightness often but its gotten worse as the time went by and I've been getting them tight muscles on the lower right leg more often

    • @thaislence7510
      @thaislence7510 8 місяців тому

      How are you now?

    • @JahoSelamaj
      @JahoSelamaj 8 місяців тому

      @@thaislence7510 im pretty sure I don't have ALS

    • @thaislence7510
      @thaislence7510 8 місяців тому

      @@JahoSelamaj Thank goodness!!

  • @donaldlovell5930
    @donaldlovell5930 4 роки тому +5

    Have u gotten tested for lyme disease? I am 38 same symptoms. Foot drop grip strength. My body is riddled with lyme! Nuero lyme does this

    • @KathleenJean53
      @KathleenJean53 4 роки тому +3

      Donald Lovell the same with me. NeuroLyme is wrecking my body, five years. Doctors have been no help. I keep asking them for help, certain I have active infection. Foot is dead, today I can not operate my arms. The system has totally let us down. They tell me there is no way to test for active infection. That is bull.

  • @kendascorner
    @kendascorner 4 роки тому +3

    Can we get an update on ur health

  • @applejellypucci
    @applejellypucci 4 роки тому +3

    Bulbar-onset ALS seems to affect people worse lifespan wise. PALS who have symptoms in the limbs first seem to have slower progression.

    • @stefchris2067
      @stefchris2067 4 роки тому

      What about the onset of bublar?does it tend to happen to older ages?

  • @albertob8336
    @albertob8336 3 роки тому

    How much time has elapsed if you had fasciculations before, between fasciculations and weakness?

  • @destany9591
    @destany9591 5 років тому +2

    I'm nervous because I've always been an active person. I'm 26. Nine months ago I started having chronic, pain, fatigue, I noticed I couldn't exercise much. My bones hurt. I went from 130 lbs down to 102. (probably due to the stress from everything.) numbness/tingling in both sides of my body. My legs feel weighed down and achy. Finally after all these months I get a diagnosis from a Rheumatologist based upon my CT scan, physical exam. Degenerative joint disease. Aka osteoarthritis. Joint damage shown on a ct scan. I was in my primary drs office for pain. 2 weeks ago before I was diagnosed with Osteoarthritis. My primary said might set you up with neurology. Your neurological exam is a "bit off." I go back tomorrow. So I'm not sure if I'll have a consultation with neurology or not.

    • @boutofthebox9758
      @boutofthebox9758  5 років тому

      Have you heard anything yet?

    • @destany9591
      @destany9591 5 років тому

      B out of the BOX I have check ups every 2 weeks. The doctor is trying to rule out everything else. He found out why I have numbness/tingling in my fingers. He pressed on my wrists with pressure and held his fingers on my wrists for over a minute and my fingers started tingling. He said that means you have carpel tunnel, the nerves that run along your arm if you do repetitive motions for a long time like at your work it can cause nerve damage or neuropathy. However, it goes down my spine too. My legs. He hasn't sent me to neurology yet. He's trying to rule out connective tissue diseases. Since I was born premature at 1 pound 2 oz, maybe the reports from when I was in the Neonatal intensive care unit as an infant will give clues to why I am suffering in adulthood. I have requested my medical records from birth . it will take a while for them to be sent to me.

    • @destany9591
      @destany9591 5 років тому

      Also, my doctor said premature babies the smaller they are the more health complications they can have in adulthood. I've been pretty lucky thus far. I was the smallest female survivor in the particular hospital in 1993, I was in the NICU 4 and a half months. I was on a ventilator because I couldn't breathe on my own, feeding tube, I had a hole in my heart which almost required open heart surgery but it finally closed up on it's own. I had two eye surgeries. As I grew older I started thriving, they took my breathing tube out, my feeding tube. I could finally been released from the hospital at nearly 5 months old. Growing up I had no issues. From the time I was 5 months - 25 years old I've had no medical issues. I live normally. Then the mystery hurdle struck me. What I'm going through now. The rheumatologist thinks the joint disease I have just happened to come on early due to my prematurity.

    • @destany9591
      @destany9591 5 років тому +1

      Any time I have blood work it always is normal except one time inflammation marker was elevated which is indicative of someone with Degenerative Arthritis (which i have.) the doctor i have been seeing, told me it also could be Fibromyalgia. I had never heard of Fibromyalgia before. It's a waiting game now. Sorry to type so much. How are you feeling?

    • @miamidalmatian0377
      @miamidalmatian0377 4 роки тому

      @@destany9591 how have U been since

  • @thatsouthfloridalivingchan3417
    @thatsouthfloridalivingchan3417 5 років тому +3

    Hi Andi thank you so much for your video very inspirational.. was wondering in the beginning if you were experiencing and strange tastes in your mouth maybe sweet taste or if you moth tongue and lips felt tingly? Also were you getting twitching right away?

    • @boutofthebox9758
      @boutofthebox9758  5 років тому +2

      I don't recall any weird tastes. Cramps seemed to be my first symptom that I recall. Horrible Charlie horse type cramps. I didn't notice twitching until later.

  • @yordantrifonov5579
    @yordantrifonov5579 5 років тому +2

    I am 23. Have muscle twitches in my legs and arms. No other weaknesses. Could this be als? I am scary.

    • @A-Brax
      @A-Brax 4 роки тому +4

      Yordan Trifonov a lot of people have random twitching. If your symptoms show for over 2 years with no clinical weakness your fine. A lot of people think there weak, when it’s just perceived weakness.

    • @warlordqueekheadtaker7960
      @warlordqueekheadtaker7960 4 роки тому

      God bless you and keep you 🙏❤❤❤

    • @applejellypucci
      @applejellypucci 4 роки тому +2

      Could be benign fasciculation syndrome.

    • @josephagapito9617
      @josephagapito9617 3 роки тому

      @@oblak430 you have Facebook?

    • @pam164
      @pam164 3 роки тому +1

      @@oblak430 I have that and had it 33 years! I'm used to muscle twitching now

  • @michaelgeorge819
    @michaelgeorge819 3 роки тому

    Were your initial cramps on both sides or just one?

  • @edda7888
    @edda7888 3 роки тому

    How are you doing now ?

  • @HectorJ.32
    @HectorJ.32 Рік тому

    How are you doing now

  • @dorisfarbvogel798
    @dorisfarbvogel798 2 роки тому

    How are you doing right now

  • @Yolandaana2901
    @Yolandaana2901 5 років тому +1

    Could you let me know more about what all you experience in pain.cause iam having some experience but the dr. Dont know yet but I have lost in my arms and I just a cousin pass away from ALS and I also have lower pain so so bad do you have lower back problems can you let me know more I wasnt able to talk to my cousin before this hot him his sister would call the family on what was going on with him

    • @thehoop74
      @thehoop74 Рік тому

      I also had a cousin pass away in January from ALS. I have been having weakness in both legs for 3 months but I can't see a neuro until February

  • @neurologiccure6732
    @neurologiccure6732 6 років тому +2

    This disease is a very mysterious one i can say but here in Arkansas i was diagnosed back in 2016 and still haven't got my final confirmation even though all my dr's give meds and treat me as if but there are only 2 places in the state to have them do the spinal tap test which is all I'm waitin on 2yrs and lost my left leg and right arm left arn is getting weaker by the day and this state just drags it out like its no big deal you can wait forever i guess when i can't move at all I'll get it

    • @boutofthebox9758
      @boutofthebox9758  6 років тому

      Bill Pointer The diagnosis process is long and stressful. Maybe try to live your best life now, because I'd you are diagnosed with ALS, the isn't a cure yet. So, they don't do anything except try to help as you get weaker. Hugs your way!!

    • @sloanerittner292
      @sloanerittner292 6 років тому

      Earl The Pearl Hey Earl. How’ve you been? Just wanted to drop by and let you know that twitching (fasciculations) is not a primary sign of ALS. ALS typically begins with clinical weakness (meaning your Doctor designates it as weakness) and atrophy of muscle in a extremity of your body or tongue. Eventually twitching does occur after denervation, but that weakness comes first.

  • @prodtonio
    @prodtonio 5 років тому +6

    Praying for you

    • @warlordqueekheadtaker7960
      @warlordqueekheadtaker7960 4 роки тому

      @@HeiJuLas we will pray for her and your mother and family we will all find out one day an find out as for me I refuse to believe this whole world and universe is so accident God bless you and your family may you be Reunited with your loved ones in the 2nd kingdom on earth 🙏❤

  • @debramather2477
    @debramather2477 5 років тому

    Did your joints start locking ( elbows ) and spasms b/t thumb and forfinger to the point of locking up. Its quite painful during and after for a whe. Happening more and more. Hmmmm....

    • @boutofthebox9758
      @boutofthebox9758  5 років тому

      Funny enough, my thumbs have done that, but according to Drs, it's not a common symptom!

    • @debramather2477
      @debramather2477 5 років тому

      @@boutofthebox9758 so what the hell makes it do that??? Perplexed.

  • @DONALD1951
    @DONALD1951 6 років тому

    I have a high ANA blood reading and intermittent twitching.
    No lupus type diseases and no RA. Waiting for more blood results.

    • @ashydawn6833
      @ashydawn6833 5 років тому

      DONALD1951 I have b6 toxicity and before I was diagnosed I thought for sure I had MS or ALS because of my symptoms. Thank goodness it was b6 toxicity. 3 months off supplements and still twitching

    • @reason5591
      @reason5591 5 років тому +1

      When you say twitching do you mean a muscle is twitching or more like jerking?

    • @applejellypucci
      @applejellypucci 4 роки тому

      Hi Donald, I have high ANA as well as twitching too. Positive for Sjogrens. Did you get tested for that?

  • @ashydawn6833
    @ashydawn6833 5 років тому

    Have you been supplementing?? Could be b6 toxicity

  • @allanhonrubia2372
    @allanhonrubia2372 6 років тому +8

    4 yrs ago? youve been diagnose w/ als? But you look so fine still? Do i have to believe u?

    • @Jon_Nadeau_
      @Jon_Nadeau_ 6 років тому +10

      Her condition may progress more slowly than average. Sometimes it takes many years before muscles deteriorate. Remember Stephen Hawkens lived with als until his late 70s.

    • @elsagrace3893
      @elsagrace3893 6 років тому +2

      allan honrubia you don’t look like a doctor.

    • @boutofthebox9758
      @boutofthebox9758  6 років тому +14

      My progression is slow. The whole reason I wanted to do these videos is to people hope. The 3-5 year prognosis the Drs always give, isn't so accurate. There are others like me. I'm just sharing my story.

    • @sabrinam.3576
      @sabrinam.3576 6 років тому

      @@boutofthebox9758 is twiching a ALS Symptome

    • @boutofthebox9758
      @boutofthebox9758  6 років тому +3

      Sabrina M. Yes, twitching is a part of it. I've been told it's my brain firing off signals to the muscles.

  • @yoshiyt5742
    @yoshiyt5742 6 років тому +2

    I hope you are ok

  • @dewiindriani7701
    @dewiindriani7701 5 років тому

    Is it related to benzodiazepine?

  • @francesegan8344
    @francesegan8344 4 роки тому +1

    this is what my husband has so sad xxxx

  • @mavischadwick6445
    @mavischadwick6445 2 роки тому

    Thanks so much Dr Alaho Olu on UA-cam first of all for who you are as a person thank you for the wonderful work that you do for people in general no matter where you are I will always listen to your podcast and refer people to you because you care about people and the human body I listen to other people but you talk about the true disturbances disorders that means things that are out of order in the human system thanks 🙏 for curing my Amyotrophic lateral Sclerosis disease (ALS)….

  • @rong6790
    @rong6790 2 роки тому

    Don’t say your dx with ALS!

  • @BigShean
    @BigShean 3 роки тому

    You’re a Fucking hero

  • @Thelastboomerworking
    @Thelastboomerworking 4 роки тому

    Sounds like CIDP

    • @chewycookie5615
      @chewycookie5615 4 роки тому

      That's exactly what my Neurologist thought mine was at 1st but the spinal tap results were just fine. Stupid ALS it is.

  • @melissavidal2600
    @melissavidal2600 3 роки тому

    Wow

  • @sandywhat2429
    @sandywhat2429 2 роки тому

    Yeah, neurologists are different creatures, quite miserable. Why would they be swearing. That’s not ok. Jerk.

  • @angelanetherton8240
    @angelanetherton8240 4 роки тому

    Zzzzzzzzzz wha what did I miss something?