Very Concerned

[hamdog]

Hi...I had originally posted several months ago with concerns over ALS...had an EMG done...etc. EMG came back clean and for a bit I still stressed but eventually relaxed my fears until recently.

Quick bit of background, I am 25, first symptom I noticed was about 1.5 years ago I was jogging and realized when attempting to take a deep breath, I was unable to, as if my breathe just hit a wall (no wheezing or anything). This eventually translated to at rest too.

I had a pulmonary function test in August which had slightly low numbers on the test where you breathe in deep and blow out as hard and long as you can...the rest were perfectly normal. Chest X ray was normal...all blood tests normal (including thyroid). I also had an EMG of my arms and legs (due to muscle twitching I was also experiencing, but that was clean)

Here is what has happened since then:

- The breathing has not improved...and as of a few weeks ago it wakes me up several times at night where it feels as though my chest just doesn't have the power to push the air out (I've had experience with obstructive sleep apnea as well and this is a completely different feeling)

- Muscle twitching has become more common, literally everywhere on my body...recently, if I hold my left hand out still...my fingers move on their own, like little "ticks"...and as they do I feel weird sensation under my skin, hard to explain.

- Spasticity in my feet and legs. In my feet, it's like the muscle in the bottom of my foot shrinks and makes my foot bend and my toes curl down, and it's very painful. In my legs, it's like one muscle just above my ankle twists one way, and the muscle just above it twists the other way, feeling like my entire bottom leg is just being twisted. This has happened a few times and it is extremely painful and lasts for a minute or two.


One of my major questions is...if ALS is thoracic onset in nature, and there was no weakness yet in arms or legs, would it show on the EMG yet if the EMG was only done on the arms and legs?

Thanks for any help/comments.

 

[hamdog]

Also wanted to add that I have had spasticity in my hands as well...making it a bit difficult to manipulate small objects (I can do these things still, it's just difficult, as if my fingers move slow and tight). My fingers hurt from time to time as well.

 

[momap53]

I believe that respiratory onset is extremely rare. I think I read the it occurs in less than 5% of cases.

Additionally, ALS is rare for your age group.

If you feel like your symptoms are worsening you need to go back to your GP and discuss these changes.

 

[ottawa girl]

Ditto- what Deb just told you.

 

[skipper66]

I think you should go to your GP to discuss your issues. They can order more tests on you if necessary. I think you should give your mind and anxiety a rest and stay off of this forum unless you are defintely given a diagnois of ALS. You don't need to give yourself any more stress in guessing on what ifs? There are tons of other things you could have going on other then ALS. Keep a very precise detailed list of your symptoms for your GP and then make a appointment a.s.ap. He's a professional not us. Don't research your symptoms on the internet either. You will just get yourself worked up to think you have something that you don't. Do something relaxing for yourself. Hope you get answers to what is going on soon. Kim

 

[hamdog]

Thanks for the responses guys.

Given my age (25) and the first symptom I experienced (respiratory)...I guess that makes ALS as the cause very unlikely.

Does anyone have any suggestions of where to look from here? My MAIN (but not only) symptoms are:

- Can't take a deep breathe at any time...wake up several times a night with breathing issues (different from Sleep apnea)...definitely seems to be respiratory muscle weakness

- Spasticity, mainly in hands, feet, and legs

- muscle twitching

Thanks

 

[sadiemae]

Have you read this yet?

https://www.alsforums.com/forum/do-i-have-als-als/20280-bfs-als-must-read-if-you-twitch.html

Especially this!

ALS is a nerve PATHWAY disease so if you have twitching and weakness BECAUSE of ALS in something like your little toe, and you get an EMG ANYWHERE BETWEEN that toe and your brain, it WILL show-up on the EMG because it is looking at the PATHWAYS BETWEEN that toe and your brain. ALS is also a body wide disease BEFORE it spreads to NOTICABLE symptoms. It is there long before 99% of the sufferer's even notice it, (contrary to what a lot of rookies will tell you). The twitching in ALS means it has already been there a while, has DONE damage and now the muscles are reacting by quivering. It is the whole enchilada that has to be looked at with CLINICAL weakness and a bad EMG. Without ALL of those symptoms (and then some), you have ALS about as much as someone with a common headache has a brain tumor._______________

 

[kiara]

Hi, I suggest you to go and see a neuro and tell him about your symptoms and fears. You say you have spasticity, maybe is not real spasticity but a sensation of stifness and tightness that is also common in diseases like fibromyalgia, even anxiety and stress can cause this sort of stifness. Only a neuro with a clinical exam can say if you have real spasticity or not. Try not to think about ALS, your symptoms may be due to a lot of other reasons.