I'm here to listen

[Siwa]

BACKGROUND:

22M

So to begin with, I've red all the mandatory article.

I don't understand what's happenning. In january I did my first ever health anxiety crisis. (15th january to 25th january) I was in a very bad mood, went from being in a full student life with friends and student for 3 years and a half, to being alone at home.

Following this crisis, my digestion went crazy (it's still going today). I told myself to not worry about this due to to my passed experience.

BUT, 2 weeks after my digestive problems has begun, I started feeling weekness in my BOTH lower legs (calves). I didn't care that much at that time, I was focused on my digestion problem. The weird thing was, the weakness was still there even at rest, that is was surprised me. I thought I had restless leg or something. (8th february)

SYMPTOMS:

8th March, I was trying to sleep when I fell my full body shaking. The following day, I've started having fasciculation in my both calves and twiching. Twiching sometimes appear in my full body but mainly in calves. I also have tremors in my both hands

8th April, huge muscular pain after walking, also on both knees. The weakness has increased a lot (not clinical yet but I feel my legs are weaker)

9th April, hyperreflexia in both knees

14th April, starting having difficulties to breath, not 24/24 but I feel it.

17th April, weakness is spreading in my arms, especially the left one,

19th April, I may have some difficulties to swallow liquid (at this point Idk if it's in my head or not)

23th April, No my breathing difficulty is 24/24, feels like if something was blocking my throat.

24th, huge pain in left elbow, arm and upper back after playing badbimton.

MY OPINION:

To be fair I'm pretty sure to have that shit but I still have some doubt:

First I don't have any clinical weakness, I can do everything as before, only I feel that it's harder for my muscle to ride a bike on a hill for exemple, or to walk, or climb stairs.

I also have that digestive issue which looks like steatorrhea (oily and yellow stool). I've seen that celiac disease can sometimes mimic ALS.

MEDICAL BACKGROUND:

I went to the doctor many times, I don't have anemia, I don't have lack of magnesium or B2....
My doctor tested my reflex and strength by march, at this time everything was okay.

I have an appointment with a neurologist on 14th of May.


PS: English is not my mothertongue

 

[KimT]

None of what you describe sounds like ALS. There are many things that it could be and anxiety is one. Post-viral symptoms is another.

Keep working with your doctors. I don't think you need to be on an ALS forum.

Write down every symptom and present these to a doctor. He might want to do a sleep study or check your Vitamin D3.

Good luck.

 

[Siwa]

Thanks for replying, could you just tell me what point away ALS in my symptoms, except the 24/7 fasciculation in my calves, the perceived weakness, the hyperreflexia

 

[Nikki J]

Pain. Perceived not clinical weakness. You stated weakness at rest. I fell fine even in paralyzed places they just don’t move. So you can’t have clinical weakness at rest. Bilateral hyperreflexia is common and normal. Fasciculations in the absence of clinical weakness mean nothing. Normal strength exam.

 

[Siwa]

Waiting for the appointment is so long. I'm very concerned about my breathing concern. I still can run and do everything but I feel that less air is getting to my lungs.

I've noticed that I may have less muscle on my left leg than my right.

Still 2 weeks to the appointment and then maybe a few more to get the test done. And then the entire life with this.

 

[lgelb]

First, I removed profanity that we do not allow here.

Second, if you can still run normally, there is no basis for thinking that your respiratory function (air exchange volume) is impaired. There are some conditions, neuromuscular and not, as Kim pointed out, where muscular weakness is more diffuse, most very treatable. Your world is hardly reduced to ALS or a miracle at this point.

Your perception of your musculature is unreliable and irrelevant. Wait for your neurology exam to see if it's any kind of clinical sign. And bear in mind that none of us is perfectly symmetric.

If you have an undiagnosed digestive disorder that entails malabsorption of nutrients, that can certainly make you feel weak. So I would get that evaluated by a gastroenterologist if your PCP is not helpful.

There is really no point to cataloguing symptoms that you think point to ALS. Diseases are not diagnosed by individual symptoms, but by a full picture.

It is really kind of demeaning to the diagnostic process that people here have gone through, and the help they've tried to provide, by continuing to insist that you know you have ALS, because you know no such thing.

You will be able to post again on May 14, so you can report the results of your neurology appointment then.

 

[Siwa]

So had the appointment today. The neurologist didn't even look at my body (I find that weird but okay). I did a blood sample and a EEG. I have other test schedule on 22 of May