Order of symptoms and time of progression

[pianokeys]

Hello,

I've read the stickies of this forum.

I'm a 31 year old male who has been reading up on ALS. I have some questions which I hope can be answered. Firstly around 3 weeks ago I suddenly felt freezing. It may of been a cold night but I don't think it was. I put the heating on full blast and went to bed with the heating on all night. This was a very bizarre occurrence for me.

The next day I did not feel cold but I noticed some twitching in my right upper leg. Since this day I have had twitching all over my body. Mainly in my legs but occasionally arms and rarely in the hands. Sometimes I go without twitching for most of the day but it never completely goes away - I may have a mild twitch at some point in the day.

I do not think I am showing any clinical weakness as I can still jog and lift heavy weights however I think I am showing atrophy in my right arm and hand. You know where a doctor takes blood from your arm, well the right side has no vein there anymore. If this is atrophy it is very mild (at present). My dominant side is my left side and I am wondering if this could just be that my left muscles are bigger because I use them more?

Now I know that everyone with ALS progresses differently which is why I feel this post may be a bit redundant but any thoughts would be appreciated.

I read that by the time you notice symptoms of ALS 70% of all muscle/nerves will be gone. Is this true? I certainly feel I look more gaunt than last year.

In general would you see clinical weakness before or after atrophy? On average how quickly would it progress?

I've had blood work done and nothing has come up.

Thank you for your time.

 

[KimT]

A huge percentage of ALL people twitch. Cut back or give up caffeine, stay hydrated with water, eat lots of fruit and veggies and keep exercises. Get plenty of sleep.

You don't need to be on this forum.

We aren't here to answer general questions. We are a support forum for dying people and their caregivers. Work with your doctor, please. And read the information about twitches being meaningless.

 

[pianokeys]

I do all the things you mention in your first paragraph.

As stated twitches are not my only symptom and the progression of the disorder is relevant to my personal circumstances in order for me to ascertain if the atrophy is relevant. I have posted in the 'could this be ALS' section.

Thanks anyway.

 

[Nikki J]

If your nondominant side is smaller this is not unusual. Not seeing a vein has nothing to do with atrophy. If anything veins are easier to see due to tissue loss

clinical weakness generally precedes atrophy in ALS by a significant amount of time There is no set timetable but the order of onset symptoms is usually weakness ( clinical detected by a doctor and manifested by failure) then twitching and then after significant disability atrophy.

 

[ShiftKicker]

The link provided at the top of the "Could This Be ALS" subforum is very helpful and provides information about a variety of symptoms, including the sensory issues you report: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

The place to start is with your doctor, who can provide an examination and assess atrophy, etc and let you know if there is a neurological issue even in the picture. From what you report (primarily sensory issues) ALS should not be your focus. You are asking folk with ALS on a forum that exists to support those already diagnosed about averages and progression- which is putting the cart before the horse.

 

[pianokeys]

Ok I saw my doctor but am still perplexed. He did strength tests and reflex tests and they came back normal. He said if the twitching intensifies I should go back to see him. The twitching has intensified and when I smile the left side of my smile doesn't go up all the way. I have also been having uncontrollable bouts of crying since my symptoms have started. Any advice would be appreciated as due to Covid-19 it is very difficult to see any neurologist even if I wanted to go private.

 

[Bestfriends14]

I honestly could not tell you what is going on, unfortunately. 70% of people twitch for no good reason. Do 70% of people have ALS? No, thankfully. We do not do general med advice and your symptoms simply do not line up with ALS. What I can tell you is that there's no need to be on an ALS forum and that is great news. Keep working with your docs.

Take good care and stay safe.

 

[pianokeys]

Something I'm confused about is members of this forum frequently say that an EMG will pick up abnormalities when early symptoms start but I've read several cases where ALS was diagnosed but initial EMGs were clean. Here's one example:



Also I am hoping I have Kennedy's disease instead of this. I know Kennedy's disease is diagnosed with a genetic blood test but will the same abnormalities on the EMG show as ALS? Thanks everyone.

 

[lgelb]

I approved this only so as to possibly discourage (1) posting YouTube first-person videos as some kind of evidence base and (2) asking questions here about other diseases, that are easily answered via the rest of the Internet. The Kennedy's Disease Association has a nice site.

Anecdotal recollection from one person may or may not be the exception that proves the rule -- there is something called "recall bias" where people remember what fits into their paradigm of the moment -- but it's definitely no justification for continuing to worry about ALS in your case.

You have received good advice here. If you still have concerns, I would advise you to return to your GP via telemedicine, or find another. There is no reason to suspect any neurological disease, so I would not worry about access to a neurologist.

Bouts of crying most often suggest stress, anxiety, depression or panic -- all reasons to share where you are with a GP who can help you from that perspective, if only by referring you to a counselor who does telemedicine. It is a stressful time and many people are also doing mindfulness via Zoom or app, which has actually shown efficacy in clinical trials.

All the best.
--Laurie