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  • First Symptoms

    Posted by Christina Birdsong on March 15, 2023 at 10:50 am

    Hello. I was diagnosed last month. I would appreciate knowing what the first symptoms were that led other patients to see medical advice. What told you something was wrong? For me it was severe fatigue. Thank you.

    Christina

    Beth Rookey replied 1 year ago 17 Members · 19 Replies
  • 19 Replies
  • Dagmar

    Member
    March 20, 2023 at 10:57 am

    My first symptoms were a profound weakness in my right foot. I dragged my toes and tripped a lot. I was always active and coordinated and even taught yoga & pilates… so, tripping and falling was a big sign to me that something was wrong.

    Other ALS patients notice different areas like speech, swallowing, hand weakness, etc. they are all signs of getting checked by a neurologist.

  • Gideon

    Member
    March 21, 2023 at 2:24 pm

    My Darling wife was first diagnosed with Parkinson’s disease, Her hands were shaking, lost her ability to smell and test, after 3 Months waiting for  appointment with Baylor ALS clinic ,We find out she has first stage of ALS .

  • John Walker

    Member
    March 21, 2023 at 2:59 pm

    I was diagnosed 2020 with ALS about 2 years after I started losing my speech in 2018.  It took my Neurologist 2 years to diagnose me.  As I recall I started biting my tongue in 2014.  I took that as early indication of losing muscle control, aka Bulbar. My legs are going next as I need a cane and rollator. I can still dress, shower and feed myself.

  • Reese

    Member
    March 31, 2023 at 1:12 pm

    speech- sounded like I had been drinking…….and I noticed my rowing ergometer scores were getting worse and I couldn’t keep up with buddies on the water when I used to beat them.   It took over a year to finally see an neurologist after many tests by my GP , she pinpointed it immediately with an EMG test – a day I’ll never forget.

  • Kim Belden

    Member
    April 4, 2023 at 2:22 pm

    My first symptoms were fasciculations on the bottom of my left foot.  Next, cramps in my left foot.  I just ignored them.  They went up my left leg, then jumped to the right foot.  It took about six months for me to start paying attention because I had no loss of strength.  I was diagnosed six months later.

  • Kathy

    Member
    April 4, 2023 at 3:25 pm

    My symptoms started as twitching in my left leg (fall 2020) and then slurred speech (spring 2021). I was an ICU nurse so I knew right away it was ALS. Finally went to PCP that September and a neurologist in November. She was gutless and wouldn’t say so I engaged a second opinion, who was honest and caring to speak truth. I use a brace on my left leg but I eat like a toddler (drool, cough, very small bites of soft food)🤪.  I still drive but fatigue very easily and few people can understand my very slurred speech. Everyday is a challenge but my faith (and husband) hold me up!

    • Utahna

      Member
      April 15, 2023 at 5:25 pm

      my first symptoms were drop foot and loss of balance.  Then came bilateral drop foot, then weakness in my feet and hips.  I wear orthotics and I use the stiks instead of a walker or cane. I’m still working full time, I am a teacher.  I think if i quit, I would curl up and die, I would have nothing to live for.  Yes I have a family, but I have been teaching special ed and hearing impaired children for 23 years.. I’m hoping to teach a little bit longer, but I will not go to school in a wheel chair.  I have a little bit of dignity left, just a little

  • Charles Sutherland & Doris Sutherland (caregiver)

    Member
    April 4, 2023 at 7:23 pm

    My husband’s first symptoms were in early 2000. He developed weakness in his left leg. Doctors, at that time, thought it was his spine (spinal stenosis) that eventually resulted in three surgeries, that did not help.  He was finally diagnosed in September 2022, after ruling out of Parkinson, MS, Myasthenia Gravis, etc.  The speech problem, along with other symptoms, finally  confirmed ALS.  A very long journey to a diagnosis.

  • Gayle Becker

    Member
    April 5, 2023 at 8:03 am

    My husband first noticed shortness of breath. Then he could not get a good grip on his golf club. He grew weaker. He was fatigued. And the unintended weight loss was occurring simultaneously. It took a long time to get a diagnosis. He is able to use a Trilogy 100 for his breathing at night. It allows him to sleep and I am comforted by the sound of the machine.

  • John

    Member
    April 6, 2023 at 2:50 pm

    My first symptom was my right foot weakening to a drop foot. Didn’t really notice until I was out playing soccer one afternoon and went to turn and fell down. Thought is was just my age showing and needed to get back in shape but it happened again. Then I went to strike the ball with my right foot and there was no power and my foot was more akin to a wet noodle. I was always pretty fast on the pitch but this particular day I felt as if someone was holding me back and my speed was way off my norm. I reached out to a neurologist in my area whom told me it was a pinched nerve between my L4 and L5 after an MRI, X-Ray, and Nerve Conduction Test. But, the symptoms continued to worsen until I reached out to Mayo Clinic a few months later. They put me through every imaginable blood tests, LP’s, MRI’s, X-Rays, Nerve Conduction tests, you name it, I did it until the only conclusion was being diagnosed with ALS. Bummer! Since then the weakening has affected my right and left side from my hips to my feet. I can still walk with a rollator but it’s not fast.

  • Mike Leist

    Member
    April 6, 2023 at 2:56 pm

    My first symptom was sporadic slurring of my speech. Several months later, I noticed fasiculations on my tongue.

  • JohnW

    Member
    April 6, 2023 at 3:44 pm

    Hello

    My first symptoms started as not being able to walk normally. I found it difficult keeping pace with others.  I was observed as waking on my heels and not propelling forward normally.  Worked with a pt to try correcting it until she said I needed to seek help.  Started with Neuro surgeon then a local physiatrist then he sent me to one neurologist who didn’t admit it was ALS .  So after the third neurologist finally told me it was ALS.  Very long journey to get there.  Possibly 6 years but I am very blessed to be a slow progression.  I continue praying for all of you. You are saints.

  • Louis Savarese

    Member
    April 6, 2023 at 7:02 pm

    Hi Christina,

    My first manifestation was having problems annunciating words starting with the letter S.

    I have bulbar ALS and I wished I would have banked my voice eariler. I did eventually bank it with a pretty good resemblance to my natural voice but the sooner the better.  I was helped by Debra of Bridging Voices 718-606-9371.  After recording and tweaking it a bit we imported it in an app called Predictable which accepts your own voice to use as well as having a ton of app voices to choose from.

    Hope this helps, God Bless

  • Mary Jo Fairweather

    Member
    April 7, 2023 at 9:24 pm

    The first change I noticed was I wasn’t able to lift the front of my left foot to open the garage can. I tripped and fell soon after. I didn’t think too much of it but my left leg became weaker. I was diagnosed four months later in January 2022. I have an excellent family doctor and there’s an ALS clinic where I live so I have a great team supporting me. Not to mention my incredible husband:).

  • Shane Spiegelman

    Member
    April 11, 2023 at 2:31 pm

    After Covid, they opened up the parks! I tried to do my 2 mile run around a reservoir and found I was out of breath, about a quarter mile in. Wondering if this was just natural aging for a 61 year old.

    My first breathing test in May 2021 showed I was in normal range.

    Went to Puerto Vallarta and got food poisoning. My body broke out in fasciculations that where so bad I could not sleep.

    Breathing got tougher and I could not walk over a quarter of a mile. Decided to work through the problem and get every test possible.

    Diagnosed with respiratory ALS in late September 2022. Have never met anyone with this form of ALS.

    My diagnosis was delayed in part due to the cost of 4 MRI’s on my insurance. They said it would cost me out of pocket between $5,000- $20,000 depending on the Dr’s coding and how they are scheduled. The Dr. said “we just want to rule everything out”.

    I decided to upgrade my insurance.

    On the 3 R’s most of the time, and life has not changed dramatically since the ALS sentence was brought forward.  Still mobile. Have the best bad luck. Best to my PALS.

    • Dagmar

      Member
      April 11, 2023 at 2:37 pm

      Shane – – what are the 3 R’s ???

  • Patty

    Member
    April 11, 2023 at 3:14 pm

    I would get cramps in the back of my thighs when lying down and bending legs back in bed. My left foot started slapping the ground when walking. Prior to that I had surg. For carpal tunnel and tendon transplant because I couldn’t pinch with thumb & index. Another surg because my index was floppy. The physical therapist suggested neuro check because I wasn’t improving.

  • Christina Birdsong

    Member
    April 11, 2023 at 3:58 pm

    Thank you for all the responses. They have been helpfully informative to me. I was diagnosed in August of last year. Currently I have much muscle wasting in my right chest and have thus lost strength in my right arm.  My knees have started buckling and I am falling. The level of fatigue is somewhat shocking to me as I feel strong, my mind feels strong yet when I do a task like washing dishes I find I can stand at the sink about 8 or 9 minutes and them but sit down. After a while I go back to the sink and repeat the same thing. Eventually I get the task done but it changes every day.

    The hardest thing I do is try to get out of bed because it takes so many muscle. I’ve learned that a bed cane is a tremendous help and recommend them highly. The palliative care nurse ordered a hospital bed for me and became very troubled on the day of delivery. I suppose it is like sitting down in a wheelchair the first time. No one wants that. But . . . it has been helpful. Today, my ortho doc ordered a wheelchair for me . . . and again, as much as I don’t want to think I need it, it has been a great help.  It’s natural to rebel against these changes but if we accept the reality of our illness, accepting these things makes everything easier.

    Chris

     

  • Les

    Member
    April 11, 2023 at 3:58 pm

    My first indication was drop foot in my left foot.  I had no previous injury or illness. I had completed a normal 30 minute session on my exercise bike and put up a security camera on ladders.  I then walked 1 1/2 miles to the school I worked at. When I got there I noticed zI could not lift my left foot.

    Everybody thought I had trapped a nerve in my back and it took 14 months before I was diagnosed with MND.

  • Linda

    Member
    April 11, 2023 at 6:54 pm

    Loss of balance, started falling, foot drop on left side, lost control of left side of body. horrible muscle spasms that start at night! Neumerous lab tests, MRIs, EMG/NCVs. Now either in lift chair, rollator walker, or wheelchair. I was so very healthy and active at 75, was told I was healthy as a horse, we don’t know why you can’t walk!!!! Neurologist are very difficult to finally get an appointment with!!! Was just diagnosed 01/06/2023. I pray for a cure!!!

  • Patty

    Member
    April 11, 2023 at 7:46 pm

    It seems like most people have symptoms on the left side first??

  • Beth Rookey

    Member
    April 12, 2023 at 1:59 pm

    My first symptom, in May/June ’92,  was my balance – I would lean over to pick up my sons toys off the floor & I would lose my balance and fall over! He thought it was great that Mommy was ready to play with him, he was 10 months old. I thought it was an inner ear issue & mentioned it to my ObGyn at my yearly, July, she sent me to a GP. After the exam he to see the neurologist. He left the room saying “It doesn’t appear to be life threatening!” Hah! While waiting for the neuro appt., in September, I started noticing weakness in my legs. MRI’s, EMG’s, blood work to eliminate everything else I was given my 2-5 year life sentence in October ’92.

    I was fortunate to be enrolled in a double blind drug trial in July ’93 and was on the low dose of the drug. We were allowed to use it open label for a few more months after the trial ended. I’m grateful I’m still here, 30+ years later!

  • Christina Ashmore

    Member
    April 12, 2023 at 4:33 pm

    My sister was diagnosed 4 years ago with ALS. Her symptoms started with muscle twitching in both leg’s. Currently she is unable to stand or walk. My sister, Linda is an amazing person with a huge heart. She has a positive attitude but ALS  is trying to take that away!!! Our family will not let that happen.  My brother in law is her primary caregiver who does an amazing job. Please don’t forget the “ caregivers “ who are going through their own pain. Some day’s I feel like her progression is slow then she has week’s where everything change’s!!! With love to all!!!

    Tina

  • IBREM

    Member
    April 25, 2023 at 8:09 am

    First symptoms…all of the above…my wifes diagnosed 4-23…speech was garbled…strength and fatique…twitching…first were told is was a pinched nerve (C4-C5)…had the operation in Nov (five hours on the table)…they removed and replaced cartilidge there and C5-C6…three months in a hard collar…three months in a soft collar…after a second EMG doctor determined and diagnosed with ALS…(she has had symtopms for about 2 years) she always feels tired…heavy even losing 45lbs…my wife thinks she may has Bulbar type of ALS..I am not convinced…but just after reading an article here…the “VBM analysis of gray and white matter atrophy in ALS can provide a basis for predicting ALS progression and prognosis,” …do we really want to know…anyway…very new to this…but this is how it has been progressing…my thoughts to you all…

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