Possible ALS?

michelley262003

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Hi all,
I was hoping to weigh in on some of your all knowledge.

A little about myself: 36F, excellent health, thin, athletic, rarely sick but lots of previous injuries due to being athletic. I believe it is a perfect storm of my injuries that has lead me here, but I really do need some reassurance. Note: I am seeing my GP on Monday. Until then, my mind has just brought me here.

Background- injuries and such
1) In 2002 I hurt my back in a soccer injury. I was 17 and it was clearly an overuse injury and the perfect/unfortunate movement of my body. Basically I twisted wrong and herniated an already bulging disc in my back. The result was an MRI that revealed a bulging disc at L5/S1. I had horrible intractable pain radiating down from my sciatic nerve to my pinky toes. I had surgery and I was good as new/returned to sports. Went on to play D1 soccer. Had a few instances of back pain/swelling but overall pretty good.
2) In 2019 I was laying on the couch and while stretching I twisted my neck and heard a loud pop. The result was immediate pain in my neck and pain that radiated all the way down my right arm. I believe from my preliminary research it could be radial nerve pain.
3) I believe I have started to possibly have developed carpal tunnel as well. I have pain in my hands and weakness when I wake up that generally goes away.
4) I had a baby in January which I know can contribute to swelling which might contribute to my symptoms
5) I had an injury to my right hand-dog bite to hand- not sure how much that might be contributing to my symptoms.

Given that background I want to share some things I have been feeling that to me feel off
1) I have had pain in my neck radiating from that initial injury down into my right hand. The neck pain is worse at night and radiates into my shoulder and down my arm. It is somewhat relieved by stretching. It hurts most when I push my head back.
2) I have recently started to experience pain in my right forearm. This is on and off again pain that feels almost like my muscles are quickly fatiguing and then get very sore. It was really bad last night but not so bad tonight
3) I have been having fasiculations in my left calf. I understand these could be nothing, and most likely are. But I want to mention that I feel them most profoundly in my left calf. This might be because of my back injury and a possibly reinjury of my back, overuse (I have just started back into working out/playing soccer after a 2 year hiatus).
4) My toes on my left foot feel funny. Like I need to wiggle them. Almost like they almost feel numb but still have feeling.
5) Both pinkies on both hands feel numb and tingly
6) My left calf is smaller due to a bone I broke in my left leg when I was 10 that crossed the growth plate resulting in my left leg being slightly shorter than the right. I also have asymmetrical muscle development in my left back due to the leg injury and subsequent back injury. This was initially noticed by my GP in 2016 on routine physical.
7) I have some joint pain in my left middle finger (no known injury)
8) I have lost weight- but have been actively dieting due to pregnancy weight gain and have gone from 170 to 125 in four months. My partner has mentioned that my arms do look thinner than before I was pregnant.
9) My right hand feels stiffer than my left hand. Not to the point that I can not move it, but just stiffer. This might be because of the dog bite. Or something else?
10) My voice feels more strained and my throat feels scratchy and painful
11) I sleep poorly

What I don't have:
No atrophy in muscles that I can see
No weakness other than when I wake up in the morning and my hands are still and sore
My pincher grasps are intact/ hand strength seems normal
I can bend and move all of my appendages

I know I must sound crazy. I know I am asking a lot out of this community. But I did recently have a friend who was diagnosed with ALS, so it is on the fore front of my mind. My mother has a lot of mental health issues so im not sure if this is true or not but she also claims to have ALS so again, I hear about ALS a lot and so its on my mind. Here are the questions I have.

1) Fasiculations. I am very confused. How would I know if my fasiculations in my left calf are something to be concerned about? Is it just that fasiculations must be combined with atrophy/muscle weakness to be considered pathological?
2) I know I am attributing a lot of these symptoms to previous injury. Am I being overly positive? Or should I be looking more critically at each one of these symptoms?
3) I am seeing the doctor on Monday. I need to get my thyroid checked out as I am currently taking 25mg of Levothyroxine and need to undergo routine blood draw. But should I be concerned about these fasiculations, in comb with the other symptoms I am experiencing?
4) Should I push for additional blood work - B12, Mag etc. ?
5) Is there anything I can do to make the fasiculations go away if this is not ALS? Again, I really doubt I have ALS. But I just need your reassurance.
 

michelley262003

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Thank you for your response. I appreciate your time and input. I ended up going to the emergency room last friday. I spoke to my GP w/ complaints of spreading numbness and weakness in my arms. In the ER the physician did an MRI and found: cervical stenosis, central cord stenosis, bulging C5 disc, foramina stenosis on both sides on three separate levels. I had a consult with a neurosurgeon and he wanted to do surgey right then and there. I had to schedule out a bit due to children/life/work but I think I may have a clear answer to what is going on with my body. (This entire situation is incredibly scary and humbling). I had a follow up with my GP today and she ordered more tests to try to come up with what is potentially causing a healthy, 36yo female to have multiple blown discs. This will be my second spinal surgery. So we are thinking possibly RA, OA or lupus.

I sincerely want to thank you for your help. I hope you keep my thread open, because I think from each situation, people can learn, and that is important. I will keep reading this forum, because I know the terror and sadness that comes along with these stories: the idea that you may not get to see your children grow up, become a potential burden on your loved ones, lose your agency and autonomy. These are all scary things, and anything we can do to help PALS and their caregivers and the peripheral people in their lives that are so greatly affected by this horrible disease- the better.
 

wishmobbing

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Thank you for updating here and all the best for your upcoming surgery/recovery!
 

michelley262003

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Hi,
I’m so sorry to be imposing upon the group. I just had some questions and an update. I did end up having surgery and am recovering from that. Many of my symptoms have gone away- mainly the symptoms of pain and discomfort in my shoulders and hands. Happy to report I now have full range of my right shoulder.

However, one of my symptoms has not been touched and I think is getting worse since my surgery. My left leg has caused me issues in the past. As a child I had a l5 hernia that resulted in pain and weakness in my left calf and hamstring. This was 20 years ago and at the time I was extremely hyporefexic in both knees.

Fast forward to 2017 and I start to notice fasiculations in my left calf. Honestly I started noticing them in nursing school specifically when we were talking about them in school (so obvious I’ve always had them).

But recently they picked up a lot. Before surgery and very much so after surgery. After surgery I did start to notice feeling kind of uneasy on my feet. Like I was stepping cautiously.I attributed it to medication: muscle relaxers and pain meds and steroids. But I’m 2 weeks post surgery and my lower left leg seems to be just off. I thought maybe I had hurt my low back but pain never came. It just feels strange/ almost wobbly. I thought at first maybe the top of my foot was numb but it’s not. I want to say it almost feels like weakness but I can’t even say for certain. Sometimes I think my left toe is dragging but I don’t think it is. The other day I took my dog for a walk and it felt almost like my left leg stuck a little bit more to the concrete than my right. My fasiculations in my left calf have picked up and have traveled into the lateral part of my leg. They are nearly constant and pretty much localized to my left calf and lateral leg. I can still do pretty much everything with my leg… heel raises, heel to toe, walk on the balls of my feet, squats etc. but I just can’t shake that’s something is very wrong still.

Brain mri was normal
Cervical mri showed bulging disc at c5/6 that’s been repaired.
Blood work is normal
My reflexes in both my knees are brisk but my upper body is normal.
No Hoffman’s, no babinski.

So I guess my question(s)
1) I know this is a subtle thing and als rarely comes on subtly… or does it in some cases?
2) I know I have some sort of benign fasiculation syndrome going on given the duration of my fasiculations. Can bfs and als also be present? I know it’s unlikely but possible?
3) I’m mostly concerned about the weakness and/or perceived weakness in my left leg. It just feels weird.
4) does als attack one muscle at a time or is it attacking muscle groups so that all functions in one limb are affected or is it one function at a time? Like would someone have an issue flexing and then extending at the ankle or would the ankle stop working all together?
5) I’ve been getting headaches. I spoke to my neurosurgeon about this and he said he couldn’t really explain headaches. They seem to be localized to the right side of my head at the top of traveling down the side of the middle of my head. They happen pretty much every afternoon. Is this an als symptom? Or do you know of anyone who had headaches as an early als symptom?

I’m sorry to be asking all these questions, I’m just scared. I have spoken to my neurosurgeon and he said on his assessment he didn’t think I had als. But he would refer me to neurology for follow up on my leg and the headaches I’ve been having.
 

affected

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Great questions that can only be answered in context with your situation with your doctors.
PALS truly don't feel all that stuff you are describing, they simply can't do things while they feel normal.

Take the referral and keep working with your doctors. All the best in returning to full health.
 

michelley262003

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Thank you. I appreciate your response. I have a follow up with my neurologist at the end of July, hopefully soon as I am on the wait list.

Sending my prayers to you and everyone out there.
 

michelley262003

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Hi everyone,
Sorry to be back but I just wanted to update everyone on me. I’ve started having weakness in my left leg. I was concerned so I went and got an mri of my lumbar spine. I have 5 herniated discs. They are all mild to moderate. I had an Emg scheduled for July but I called and had it moved up due to someone else cancelling. So I have it this Thursday.

I’m super scared but hopefully ready to put this all behind me with a clean Emg. I’m trying to stay positive. While I haven’t been a religious person since I was a child, I find myself speaking to god.

While unrelated I wanted to share
I’m a nurse, I also have a PhD in neuroscience (focused on Multiple sclerosis drug development)
I read a lot of the do I have als and for every person who posts I think about you and am so relieved for you when I hear you are ok. For every person who is affected I pray they find a cure, treatment anything.
 

lgelb

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Thanks for the update and let us know about the EMG results.
 

affected

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Good luck, I hope you will find the results truly do put this to bed for you.
 

michelley262003

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Thank you leglb and affected. I appreciate you both. I do hope to put this to bed so that I can shift my focus onto other things
 

michelley262003

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Hi all,
I had my EMG. It was just of my upper extremity. Also no neuro exam, as I guess the appointment was only for Emg. The doctor didn’t really consult with me. He said my neurosurgeon would interpret for me. But he did say that it was stone cold normal. I have an appointment on June 1 with my neurosurgeon. But was wondering if someone could in the mean time take a look. I’ve attached. I know you all are not all doctors but was wondering if this is the good clean emg I was hoping for. It doesn’t explicitly say it rules out mnd.

Thanks you all. I think after some of you reply I will put als out my mind and focus on what is going on with my spinal cord which I want to believe is the many herniated and bulging discs.
 

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Nikki J

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Yes. Congratulations. If you look at the section under emg you can see the comments are all normal none and full. Absolutely normal emg as you were told with no signs of MND or anything else.

have a long and happy life
 

affected

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We don't have any doctors answering posts at all, but you don't need to be a doctor to read normal all the way down. This is great news, please, please, put this to rest now. Don't waste another day you will never get back chasing this. I truly wish you the best.
 
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