does this sound like ALS?

Hello everyone,

I have been reading posts on this forum for the past 6 months or so and I would firstly like to say how incredibly sorry I am for all of you who are fighting this terrible disease.

I feel terrible for posting which is the main reason I haven’t posted since numerous symptoms have presented. I am in grad school and my symptoms and the anxiety they are causing is making it extremely difficult to focus on anything school related so I figured it was time to ask for some opinions. Firstly, I am a 23-year-old female. I have always been and am still very active. 

I will try to keep this as short as possible as I have been experiencing a ton of unusual symptoms for the past year. All of my symptoms began with my right side, and now I am experiencing some symptoms on my left as well (but currently still worse on the right). It was last December (2015) that walking felt strange. Every now and then, I would trip on my own foot. Then, while running, I noticed my left leg felt heavier and would turn red. After feeling it while on the treadmill, it felt warm/hot and the temperature of my left leg was normal. From then, I began to get tingling sensations around my calf/shin area. This sensation would not go away so I saw my family doctor who referred me for a brain mri that came back normal. As I don’t want to make this extremely long and pick out every detail,

Here is a list of all of my current symptoms:

  • weakness on right side. I drop things constantly, something like a carton of milk feels heavy. I can’t put a lot of weight on my right wrist. In my opinion, my right hand is the worst. I can flex certain muscles on my left hand and feel them harden, but when I try to do this with the right hand, I don’t feel the same muscles.
  • muscle atrophy. This is also my opinion. I measured above and below knee and right side was between 0.5 to 1 mm smaller. I know that these slight differences are normal, but its more about me being able to push into all of these indented spots on the right but not left that are worry me.
  • balance problems
  • right hand clenches. When I relax it, it sort of clasps looking claw like.
  • if im trying to pick up a bobby pin, or pape
  • muscle fasciculation that started on my right but I know in my left calf. On the right side, I have felt them almost everywhere. Sometimes I can see them, sometimes I cant. Sometimes it feels like it is popping, sometime it feels like a few quick ticks. I can see it on the thumb side of my wrist all the time, but I have to look at it from a specific angle in bright light. When my hands are together, they feel like they are pulsing all the time. My tongue also has these dents on the side which I didn’t have before and now one in the middle, close to the tip of my tongue.
  • certain words are hard to articulate and I am slurring some words. Swallowing certain foods was difficult before. I felt like I had to think about swallowing and would always get little small apple and carrot pieces stuck in my throat. This has gotten better (not typical of ALS) but will get worse again.
  • have phlegm in my throat ALL the time.
  • my right hand and foot will get significantly colder than my left (my left hand will feel like it is at room temperature and my right will feel ice cold).
  • I get these electrical like sensations throughout my body at random times (especially when cold).
  • when I smile/laugh, the right side of my face starts to feel sore and cramp almost.
  • my right foot and leg will get extremely sore after walking up the stairs or walking in general. Also, I will be ridiculously out of breath from walking up the stairs
  • I was getting extreme cramps in my right foot and calf but those have decreased. These were before the twitches.
  • when I do certain movements, such as lift my arms down from a pull up position, lift my lefts down, evert my ankle etc., I hear this popping like noise (all the time). My joints also crack everywhere which is very unusual for me.
  • a lot of joint like pain in my lower back, middle of scapular, neck. Muscle aches as well. About two months ago, I was having this terrible pain getting out of bed (I had to roll myself out of bed, I couldn’t just sit up).
  • memory problems
  • when I push down on my muscles, they feel spongy and soft.
  • I have a tremor. Sometimes it is worse, sometimes it is not there at all.
  • my whole body feels shaky. I have been doing this one ab exercise where I told my legs and upper body up off the floor for years, and I can’t do this anymore without my entire body shaking.

There are other symptoms that come and go and some I had In the past that have not returned so I will leave them out especially because of how lengthy this already is.

I saw two neurologists (one in June of 2016 and one this past January 2017) and both said that their were no clinical weakness and no clinical findings. They said they weren’t worried at all and made me feel crazy for going in. I can still walk on my toes, my heels etc. it is things such as cutting an apple that feels difficult. Things like always dropping things out of my hand. I am in grad school for a health related profession so I know neurological examinations, muscle testing etc. but I cannot find any explanation for all of my symptoms. I feel extremely scared and alone right now, and the worst part is that I notice things getting worse. The last neurologist I saw last month told me he thinks he could be psychosomatic. If anyone has any experience with this, I would love to hear what you have to say. I am willing to see a psychologist if that is the solution. It doesn’t make sense to me that I could run 10k no problem, and now I feel like my leg is going to give out and like I have to hold my foot up, after running a short distance. I am under a lot of stress with school and my stress and anxiety has now increased ten times more.

The tests I have had done are the following:

  • brain MRI: normal
  • EMG: normal
  • I have had blood work done through a family doctor a few times but no intensive blood work. Last blood work was done in May or June and everything was normal, but iron levels were high

I thank you from the bottom of my heart for taking your time to read this lengthy post and any advice and/or opinions you may have is so deeply appreciated.


David's picture

Hi Shae,

Because you're looking for an answer to a question about ALS I would recommend you post this entry in the "Do I Have ALS?" section of the forum.

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