Any input on my worrying symptoms would be great

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conh9

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IE
Hi all,

First of all I would like to thank everyone for the work they do on this forum. ALS is a horrible disease and the work you do here to answer peoples concerns is amazing.

I would greatly appreciate some input on my symptoms that have been on going for 7 months now. For reference I am a male who just turned 31. Was very active, Gym 5 days a week prior to symptom onset. Only health issue I have is a hiatus hernia.

  • Symptoms began in June this year when I was out for food with friends- Had a moment when my brain felt "fuzzy" and then notice typing on my phone was very labored and when I left the restaurant my right leg felt like it had just been for a run, very sluggish
  • 2 weeks later symptoms did not subside, no loss of function or anything hand and leg just felt sluggish. Went to GP and strength tests were normal and was told to leave it a month and see.
  • In this time I went on holidays backpacking in a hot country and symptoms seemed to get much worse in my hand with my pincer grip becoming extremely labored (really had to focus on gripping coins, bank card etc) right thigh remained sluggish. I seemed to regain some of my strength in my right hand however as it did not feel as bad when I returned home. Still not back to what it was prior to symptom onset but I felt I could use my fine grip a little bit more.
  • Then when I got back my right shoulder at the back got very weak and was crunching a lot every time I rolled it.
  • Went to my GP again he did clinical exam and still found no weakness in the hand and leg and the shoulder was likely due to the back pack I was carrying. We got a back of brain and spin MRI which was clear and lots of different blood work looking for B12, TSH and inflammatory markers for arthritis which was all clear.
  • I went to physio and we started rehabilitating my shoulder. We also used dynamometer to check my grip strength and it seemed very strong which was a relief.
  • 2 weeks later fasciculations began in my right thigh once every couple of hours didnt think much of it but this is when I looked up fasciculations on google with weakness and began to worry.
  • At the 2 month mark the fasciculations became widespread and have been non stop since. Almost 24/7 on my right foot and very often on my right calf and below the bicep. Then I also started to feel weak in my left hand and shoulder and within a week my left leg. Same feelings I had on the other side. The left hand weakness comes with extreme cracking and a constant cracking of the tendon over the bone
  • 3 months in and the phsio rehabilitation was working really well on my shoulder and he also got my left shoulder back up to normal strength which he noted was very weak also. Used the dynamometer again and no difference in hand strength.
  • 4 months in my right and left hand grip still felt very weak- no dropping or inability to close or open objects, can still lift a cup etc but not myself. Right thigh still feels very labored. I went back to the GP again he again couldn't detect any weakness but could see at this point I was extremely anxious about ALS so for peace of mind he referred me to a neuro but said it is an extremely long waiting list in my country.
  • 5 months in I happened to get a cancellation appointment with a neuro- not a neuromuscular specialist but I assume he still knows his stuff. He did his exam(15 mins or so) and the only thing he noted was a slight brisk reflex in my right knee- Negative for hoffmans and babinski - No tounge twitches noted . he said ALS is very unlikely and he seen the fasciculations going crazy on my foot and said its most likely bfs and the weakness I have is functional not neurological. The only further test he recommended was a Brain MRI in Feburary to look for MS and said he would sign me off his books if it comes back negative. No EMG recommended which I took as a good sign.
  • The last 2 months however my weakness in hands and legs is still persisting. Hands still feel very weak at my daily activities like gripping things but no failure but much more labored compared to symptom onset. Right thumb pad I can clearly see a line going down my thumb pad when I tense but that wasnt there before but I assume I would have clinical failure before atrophy was noticed. Legs still extremely sluggish and feel like they want to give out. Did some squats at a much lower weight than I used to today and after one set my hamstrings both felt like they were going to go into cramp. My shoulders are now very weak again too , I was folding over sheets of paper yesterday and found it very tough to do with my left shoulder. Fasciculations are still going crazy everywhere even on my jaw sometimes. My jaws feels very tense now also and as well as this I've been gagging in the morning when I wake up all week. Feels like there's something in my throat but there isnt.
My questions for you if you have the time to answer-
  1. Do you think my symptoms match with the progression of ALS and I have just not reached the point of failure yet but its possible it may come?
  2. Should I try and see my neurologist again as my symptoms are getting worse and get them to do an EMG- It could be a very long wait unfortunately in my country
  3. Would 7 month be a very quick time frame to be feeling weakness in all limbs without failure being in one and as well as this potential bulbar symptoms starting to show. And is it common for ALS to start in a hand and a quad on the same day?
I've never had health anxiety or anxiety prior to this but obviously when you get into the hole and have potential symptoms its hard not to be stressed. I have also started CBT which I never did before incase my symptoms may be somatic but I just don't want to stop the search for answers if there may be something seriously wrong with me at the same time.

Any input would be great and thanks so much for your time
 
Hi there-

Hoping you read the Read Before Posting, particularly the portion that states twitching without clinical weakness points elsewhere.

To answer your questions:

1. Nope. Not at all. Make sure to read the pinned link.
2. If you feel your symptoms have changed and you are experiencing a loss of function, then returning to your GP first is the way to go. They have your baseline, as does your physio.
3. Yes. That is not really how ALS presents itself. ALS's hallmark symptom is loss of function/clinical weakness. You report a feeling of weakness, which isn't the same thing.

Glad you're seeking some help with health anxiety. Not saying your physical symptoms aren't real, but having health anxiety on top of your physical symptoms can definitely make it more difficult for a doctor to tease out cause, as well is a daily burden to you.

Take care
 
Thanks for your time and answers to my question. I really appreciate it!
 
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