Worried about ALS I’m 27

[Jamiecockburn]

I’m a 27 year old male and really worried that I have ALS. So it all started about 4 months ago I started having periods of extreme exhaustion and dizziness where I would have to sit or lie down during the day as it felt like I had ran a marathon and had no energy. Then I started getting a tingling feeling in my right hand which quickly spread to my arm and then over to my left hand and arm and then my feet, still having the lightheaded/dizziness feeling.

Fast forward over the next months I start getting tremors in my arms and shock sensations in my feet and in my leg almost as if it’s buzzing, also brief sensations of burning feeling in my leg and arm but that symptom quickly went away and then struggling to walk as my legs feel weak and heavy and my balance has really been affected I can no longer do some of the things I used to or stand for any period of time my arms also don’t seem to have the same strength.

These symptoms have developed now with continuous twitching in every part of my body including my left eyelid and really bad aching pain and cramps in my legs that are almost constant for the last month and a half or so and are not improving.

I have been to the hospital numerous times explaining my symptoms but the consultants are puzzled as all my bloods have come back clear every time I have also had an MRI of my brain and spinal cord that came back clear, they have done various tests and said I have hyperreflexia in the limbs and I said my legs feel weak but they said that they can’t find any clinical weakness.

I have been referred to a neurologist and they have fast tracked my appointment given the new twitching and cramp symptoms so it will be early in the new year but It’s just driving me insane with what’s happening I know ALS is really rare in my age group but I already have an extremely rare disease so my anxiety is just comming to the conclusion that I will get another devestating diagnosis

I would really appreciate any help or advice

 

[lgelb]

I'm sorry for your troubles, Jamie. It would help to know your extremely rare disease? Diseases can evolve from one thing to another. Also, your description of your issues sounds more systemic than anything, so that's another reason for the question. I would also wonder if you've had lab tests to determine if there might be a post-viral syndrome, infection, or inflammatory disorder.

I gather you have not had an EMG yet. That will help clarify whether you have any neuromuscular disease. But what you describe does not sound at all like ALS to me.

 

[Jamiecockburn]

thank you so much for the reply I really appreciate it. Yeah I have Achalasia witch is a swallowing disorder of the esopheguos that’s about 1in 200,000 in my age group there’s no cure but I had surgery to help manage it at the end of 2023 but that’s another thing when the consultant asked me about difficulties swallowing I can’t give them an accurate answer.

the symptoms did come on like a virus at the start as I was feeling really dizzy, couldn’t walk in a straight line but then all the other more worrying symptoms like twitching and my legs cramping and feeling weak and really stiff that have been constantly getting worse for months Also my left forearm felt like it had like 5kg weight sitting on it for weeks but has since improved a little but the heat seems to make symptoms a lot worse also like after a walk or being in the shower my feet and legs are twitching like mad.

Yeah hopefully when I see the neurologist I will explain the situation and hopefully I can get an EMG and get closer to getting an answer but I’m driving myself mad thinking that I could be ALS but thank you so much for your advice you have given me a bit of hope back