2 Years of symptoms

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DebbieDoc

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Thank you for everyone in this forum that takes there time to educate and answer some of our questions regarding als symptoms. You are very appreciated.

I posted here in August regarding my symptoms I’ve had for two years now, starting Feb 2019. I’m 23 years old and female. My first symptoms were started feeling weak, my arms would shake by just holding my self up, I also noticed I had a hard time saying certain words that involved saying R like world, girls, earth, birth certificate i would slow down and say it because it simply felt weird. Then looked up on google and found ALS causes muscle weakness, slurring your worlds and twitching is a symptom and realize tongue was twitching, soon after

My body had wide body twitching and my right hand (my dominant) became suddenly weak, and appeared smaller than my left and I had a noticeable tremor on my right hand doing any task, and lots of stiffness, my right shoulder also felt weaker, and there was noticeable wrinkling on it. I scheduled a neuro appointment did blood work in March 2019, everything was clear, my neurologist looked at my twitching and said she’ll get an EMG to calm nerves but she didn’t believe it was ALS. In early June 2019 I got a full body MRI & did a Barium swallow test, everything looked okay. Then on June 21,2019 I did an EMG and I was told that same day I did not have als, or anything wrong with my nerves and I was good to go.

My symptoms continued but didn’t seem to progress, but in September 2020 I noticed my right hand become really really stiff and reactive to the cold, even if it was a little cold, my left hand would be fine and my right was in slow motion and stiff, I called my doctor and saw a neuromuscular doctor and he said he saw nothing wrong and my right hand is strong. Now in Jan 2021 I notice I’m choking on my spit, and intense twitching on my right side of my body, my right leg also feels weak and shakes ALOT when I’m just standing, my speech sounds okay nothing has changed but I’m scared my symptoms are progressing and I took my EMG to early back in 2019.

Does ALS progress like this? Or any insight on what could be going on or other steps I should take.
 
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lgelb

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If you mouse or write with your R hand, it is not unusual for it to feel colder. You have it out more.

As you will have read before, twitching, feeling weak and shaking at rest are not ALS features without clinical weakness, inability to do things you did before, etc.

In cold, dry weather as you have in Boston, many of us swallow more, cough more, and certainly need to stay hydrated. It's funny that we think of this in summer with dehydration when the throat-type symptoms may actually be more pronounced in winter. For example, I will get a dry throat while walking up a hill if I don't drink before I go out. A humidifier and/or air purifier in your home is worth a thought, as is being fanatical about changing your furnace filters. A nasal steroid and/or oral antihistamine like fexofenadine (NOT Benadryl or any diphenhydramine product) may be something to try as well. There are even dry throat sprays and sugar-free cough drops to help even out the saliva.

The short answer is no, ALS doesn't progress like this. In re the shaking -- diet, exercise, sleep and stress (in addition to that hydration thing) are all areas to look at, maybe keep a diary to try to find your triggers, etc. We are all stressed in these times, of course. But you haven't had two years of symptoms, you've had two years of life. To help you stay productively in that mindset, you may want to consider counseling. There are also many "classical stretch" videos/Tai Chi/Pilates etc. on YouTube that may help.

Best,
Laurie
 

DebbieDoc

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Thank you so much Laurie for your input and advice on how to handle my anxiety! I will definitely take your advice and try some Tai Chi classes. You guys are really the best for taking your time to calm some of our nerves. Have a great new year! Thank you again!!!
 
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