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Thread: Fearing ALS

  1. #1
    Join Date
    Aug 2019
    Posts
    36

    Fearing ALS

    I have a severe ALS fear and I'm going through tests right now. My story is a bit like this: I' m a 35 year old female with a history of anxiety and I had spinal surgery due to scoliosis at age 13/14. I have rods in my spine. Over the years I had some spasms in my back which have made me stiff while trying to straighten out. These were linked to my periformis muscle. I still have a slight scoliosis so my body is not aligned well. In winter my vitamin d levels were very low at 25. I experienced massive work related stress anxiety for the past 2 years which increased in April. I had massive burn out and was overworking myself and not eating or hydrating well. I started having panic attacks and insomnia

    At the end of April 2019 went on anti anxiety medication, brintellix which caused bruises on my legs. Overall I felt good on the medication. I was also taking supplements, LGlutamine, Vitamin b, probiotic, magnesium. By the end of June 2019 I went to the ER due to very bad leg pains. The weekend before I had these symptoms I did a lot of very hard labour around my house and walked for 2 h. Im not very active. Also the week before I drove 8 hours straight with very short stops in between. I did the same trip back 10 hours after 3 days.
    Initially I ignored the leg soreness as just lactic acid build up but by thursday night I realized it was not normal. I thought I developed a blood clot. Turned out my CPK muscle enzyme was at 11, 200 so my muscles were breaking down. I was diagnosed with rhabdomyalysis cause unknown. Had to stay in the hospital for 3 days on intense IV fluid flushing. My CPK levels have been consistently down at normal since discharge which is a good sign. Rhabdomyalysis can be caused by intense workout, crush injury, ssri's which i was on but it is also linked to muscular/neurological issues. During this time I also quit my anti-anxiety meds cold turkey as apparently 4 days was enough according to my doctor. I believe I had withdrawals. Brain fog, insomnia, resless leg syndrome, vertigo those stopped.

    For about a week and a bit after hospital discharge I was okay then the following happened:

    A week after hospital discharge, I decided to go down 23 flights of stairs and carried my friends 18 month old son around a mall. Not the smartest decision after muscle breakdown. The following day my calfs were inflamed. I could barely walk on my left leg. I rushed to the doctor to check my CPK which were normal. My legs were ok and I was able to walk fine.After that week everything went downhill.

    Since June 17, I started twitching in my left bicep. The twitches spread to other parts of the body: legs, feet, back, ribs, you name it I had it. The twitches are daily some days worse than others. They are not constant and happen when I'm at rest or when I'm not moving the area. Initially I had these weird sensations in my legs as if I had bugs crawling inside or bubling. That has since ended. I also have cramps in my legs after walking or numbness primarily in the left leg. This also comes and goes. I did have a band like sensation around my head that's gone. I had one tiny tongue twitch. I have gastro issues. Before being on medication I had IBS. I cannot form a normal stool now. I been to a Gasto doctor who said I'm constipated which I don't think that's the case. I started having a a right hand tremor that comes and goes. On July 23 i had a massive facial twitch on my left side. I was crying so much that day and felt my nerves building up inside me when I found out my MRI and nerve study will not happen until November. After I stopped crying the twitch happened. I thought I was having a stroke. I didn't have it again but sometimes still get a bit of a twitch around the crease of my mouth, my eye lids are more shaky when I close them and I had a bit of a twitch to my left eye lid. I had to take predisone steroid for 5 days as my face did droop a bit. I also have tingling in my hands that come and go and burning sensations in my arms. Last week at night I had electrical like sensations running from my elbow to my fingers. I feel tired in general but I'm also in a constant fear and panic that I have this terrible disease. I cry daily. This week alone I been to the Emergency Room twice. I had a CT scan on my brain which showed no abnormalities. The hospital has referred me to see a neurologist. That appointment is on September. I will also be getting a full MRI of my brain and spine. The nerve conduction study is pending. I already had autoimmune tests and muscle related blood work which all came back fine. Im also waiting to complete Lyme disease testing. One of the ER doctors wrote peripheral neuropathy as his diagnosis which scared me even more. He wrote that my leg reflexes are hyper but im symetrical on both sides and I'm still within the 2 to 3 range which I read is normal. When I'm in a hospital or having tests done I'm highly anxious. Even during a leg ultrasound my legs were shaking so much from fear you would think I was having a seizure.
    Every doctor that I've seen don't think I have MS or ALS but untill I have tests in my mind is like what do they really know. Honestly I will take MS any day as a diagnosis because at least you can live with it. I am not dropping anything, I'm not falling over, I have no dropped foot nor does it look like doctors are concerned about me having clinical weakness. I can walk on my toes but i'm more shaky when I'm standing on them in one spot. I can stand on one leg on both sides. I have some weakness like I'm not as strong as before but I can still do things. The last Emergency room doctor who ordered my CT scan said that we will do more tests to rule out organic causes and he did mention ALS, MS even though he told me that he also does not think I have it. I started to shake uncontrollably at the hospital at the mention of ALS. He ordered me to take lorazapam every 4 hours. It keeps me calm but I feel like I'm high 24/7. It has stopped the burning in my arms but when I have to drive I dont take it so the burning comes back. Twitching is less on lorazapam but still there. I am going to therapy and I'm doing CBT but I honestly find it useless now.

    I am a complete basket case. I had good days but every day now is a struggle. I'm so scared that this is the start to an end.
    I am obsessed with body sensations. I keep thinking my muscles are shrinking but my family does not believe so. I am not losing drastic weight just fluctuate between few pounds.

    I'm scared that the CPK started because of an underlying disease. I'm scared that the ssri's were just a coincidence and not the cause. I also wanted to think I was going through medication withdrawal but I can no longer believe it would take this long.
    I've been reading other peoples experiences on this forum and it does help to an extent but I'm living in hell.

  2. #2
    Join Date
    May 2015
    Posts
    124

    Re: Fearing ALS

    Just wanted to say I have had twitching for 9 months now and understand your ALS/MS fear. I went to a neuro and passed the neuro exam, but waiting on an EMG next month. At this point, I am hoping anxiety is the cause for all of this. I would imagine I would be getting worse by now if it were something more sinister. Are you taking anything for anxiety?

  3. #3
    Join Date
    Aug 2019
    Posts
    36

    Re: Fearing ALS

    I went back to my doctor today and I will be starting Zoloft. I am currently taking Lorazapam every 4 h which is not a solution. I have my brain mri tomorrow and the spinal one is pending. Very nervous of the outcome. I am in the barganing stage where I would be okay with MS as I know you can still live a productive life. My close friend has MS so I know it is duable.

  4. #4
    Join Date
    Jun 2011
    Posts
    853

    Re: Fearing ALS

    As an aside, ALS and MS fears are very common here. To my knowledge there is a single MS diagnosis out of the hundreds, maybe thousands of posts here about neurological fears. No ALS diagnosis at all. Last I heard the person who had MS was doing fine.

  5. #5
    Join Date
    Aug 2019
    Posts
    36

    Re: Fearing ALS

    I had my brain MRI and it came back clear. My c-spine MRI is this saturday. My doctor freaked me out again and I started to do well. She prescribed me Clorazapam in between until Zoloft kicks in. The twitches went away but returner mildly after my conversation with her yesterday. I found out that Clorazapam can be used to treat anxiety but it is also prescribed to people with neurological issues to stop spasms, twitches etc. She told me that if I do the nerve study I might need to stop taking it before the test as we won't really know anything until the nerve study. Now I just feel like ok I'm taking this and it's just masking stuff up. I'm back to freaking out.

  6. #6
    Join Date
    May 2015
    Posts
    124

    Re: Fearing ALS

    I totally get your fear...I'm right there with you. BUT if the clonazepam is stopping the twitches, I highly doubt it is anything super serious. I'm not a dr, but I don't think anxiety meds would stop twitching in something like ALS.

  7. #7
    Join Date
    Aug 2019
    Posts
    36

    Re: Fearing ALS

    The medication deceased the twitches and I felt great until I saw my doctor which increased my anxiety and put me back into the hole of "what is this". So now I'm back to twitches not as much but still there and experiencing right leg numbness and ache in that leg today. Yesterday I was so depressed I stayed in bed all day. I would be so happy if all of this is caused by my anxiety. I think once I go for my nerve study I'm going to cry in that office out of fear.

  8. #8

    Re: Fearing ALS

    Having this fear myself currently. Anyone else fele like their thigh muscles are twitching or quivering very slightly? Also had lots of aching joints etc. Got myself into a real state over this

  9. #9
    Join Date
    Aug 2013
    Posts
    19,860

    Re: Fearing ALS

    I post THIS on all the ALS threads and it's time to post it here.

    Positive thoughts
    __________________
    "Eat. Drink. Enjoy the work you do. Be thankful for the blessings God gives you in this life. Live, love and seek out the things that bring your heart joy. The rest is meaningless... Like chasing the wind." King Solomon

    The best help is the help you give yourself! http://cbt4panic.org/

  10. #10
    Join Date
    Aug 2019
    Posts
    72

    Re: Fearing ALS

    These posts brought back so many memories from a very dark time in my life. There are so many ďsymptomsĒ that u have that I also had. Bc of a sudden onset of muscle cramps, weakness, fatigue, localized muscle twitches...I was convinced that I was going to meet a terrible fate with ALS. CONVINCED. So much so that I prayed that in the end the diagnosis would be MS instead of ALS bc it is manageable. I watched my muscles constantly to see the twitches that I felt. Analyzed the size of my muscles (is that a dent or is that muscle smaller than the other bc itís wasting away?) I. Was. CONSUMED by this fear. The closer it got to time for my tests (I had them all done in one day), I could barely eat, sleep, or think straight bc I was so scared. When the technician told me that she saw nothing on the tests besides mild neuropathy, it took a minute to sink in. By the time I made it to the parking lot I broke down and cried. It was like I could finally let go of months of months of the fear. On my follow up appt, my doctor said I had my Myositis or inflammation of the muscles. I still do not know what caused it and thatís just fine with me!!! The funny thing is, after I knew I was fine, I stopped watching, analyzing, fretting and eventually stopped twitching thatís been about 2 1/2 years ago oddly enough, when I get a random twitch here or there now itís when Iím stressed. Please take comfort in what Iím telling u. Trust me, I know it is hard but it IS possible. Get ur test done so u can put this behind u like I did.


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