Very worried about symptoms (25yo male)

[Harry98]

Hi all,

I’m a 25yo male, and I am extremely worried that my ongoing symptoms may point to ALS. I started experiencing heaviness and weakness in my legs around 3 months ago, which has recently spread to my arms. I have full mobility of all limbs but they just feel tired and achy all the time. I live an active lifestyle but feel I can do less and less and muscles get tired quicker and feet and ankles feel brittle/unstable when walking or running. My legs haven’t given way and I haven’t fell at all.

When I lie down I feel a squeezing/numbness in my hands and feet. I’ve also been suffering from neck pain and feel like there is pressure on the back of my neck which on occasion has given me headaches. In the last week I have noticed fasciculations in my legs when lying down which are visible. Also in the last week, swallowing liquids has felt not quite right and feel like I am constantly having to clear my throat throughout the day. When I look in the mirror for possible atrophy I feel like my whole body looks thinner/weaker. I have seen a neurologist who gave me a physical examination and said strength was fine and “No ALS”. I am due to see a second neurologist on Tuesday so I am very nervous. I appreciate my symptoms may seem vague. I read the “before posting”thread and acknowledge my health anxiety but I am very worried and would appreciate any advice anyone can give.

Thanks
Harry

 

[lgelb]

The issues you've described don't sound at all like ALS. I would really huddle with your GP presuming the second neuro gives you the all-clear, because this seems systemic if anything, possibly a post-viral syndrome.

Best,
Laurie

 

[Harry98]

Hi, I just wanted to give an update as things have progressed since my last post. I will try not to ramble on too much before I get to my question.

I feel that my legs are getting weaker and the fasciculation’s are happening very frequently and all over my body. The issues have been mostly symmetrical but the last few weeks my right leg/foot have started feeling worse than left and walking has become uncomfortable.

I’ve also been experiencing more frequent sensory symptoms (leg pain, pinching feeling in wrists and ankles, dull aches in arms, tired limbs), given all the research I have done I am taking this as somewhat of a positive.

I saw the neurologist again yesterday. He agrees things aren’t normal and observed that I am not walking as well as I should be. He didn’t observe any clinical weakness but he observed that reflexes in my ankles were absent. He said this actually points away from ALS and he said he isn’t worried about ALS. Can anyone share their knowledge on his view of absent reflexes pointing away from ALS, considering I still have full function.

However, he is concerned about an illness called CIDP. I have never heard of this before but it does seem to fit my symptoms. I have an NCS/EMG test scheduled in two weeks so will hopefully get some answers then.

 

[Nikki J]

Since ALS affects upper motor neurons hyperreflexia is usually seen asymmetrical hyperreflexia in a clinically weak limb MAY be a sign.
Absent reflexes as you were told by your educated and experienced neurologist point away. As well as CIDP they are seen in myopathy

Do let us know what your emg shows. CIDP is no walk in the park but infinitely better than ALS and has treatments. Good luck