Breathing and bladder control issues with weakness that comes and goes

[Leo_Rain]

Hi all, and greetings from Finland. Since this is probably the most popular forum regarding ALS, I thought I'd give it a shot and see if anyone here has felt something similar what I have.

I'll list here my symptoms and how my condition has progressed:

November 2020:
My left eyelid started to feel a bit 'heavy' in the morning. When I looked in the mirror, I noticed it was mildly drooping when I woke up (from time-to-time), but during the day the sensation went away.

December 2020:
I started to have problems in bathroom. Every time after peeing, there were some drops of urine in my underwear. No matter how properly I 'shook' the problem didn't go away. I saw a urologist about this and he said that my muscles down there were too tight and that was causing the problem. No infection, no prostate problems, just the muscles.

January 2021:
Feeling slight numbness on the left side of my face and headaches on the left side also.

February 2021:
Within two days: my left hand's fingers stopped working properly during typing as if the hand's muscles were cramping/moving slowly a bit (no pain). At the same time I noticed this strange feeling on the whole left side of my body (from face to shoulder, hand, ribs etc.). It felt like numbness/slight weakness but without tingling sensation. I got to ER and they did MRI on my head and neck. Everything's fine.

March 2021:
My left arm's and leg's muscles went super tight all of a sudden as if I'd done a huge workout. I tried everything to ease the tightness, but it didn't go away. I started to have muscle twitches all over my body. My left leg felt a bit strange when walking (as if I was walking on a pillow). My left arm started to feel weak from the shoulder and my hand's fingers got tired easily when I was writing or playing guitar. I went to see a neurologist and demanded an EMG/NCS. It was clean. My blood tests showed high CK and LD levels, but after 2 weeks time they were normal again.

All of a sudden I started to get weird breathing problems: I couldn't get a deep breath any more. I could still run, sing and exercise, but every time afterwards I couldn't take a deep breath. My diaphragm started to feel 'stiff' and I needed to massage it a lot. Sometimes this problem would go on for weeks, then go away and then, if I went E.G. singing, it came back the next day.

I couldn't sleep properly anymore. I would wake up gasping for air and my dreams started to feel super-vivid. My arms felt heavy every time I woke up.

April 2021:
From Feb to April I lost about 22 pounds and for some reason started to feel super hungry. I needed to eat basically every second hour large amounts of food (sometimes even during the night). Still I felt like I wasn't gaining weight (my arms and chest looked super skinny for the first time in my life). After a month or so I started to gain weight again, but the excess appetite stayed. Because of the hunger my stomach started to look like Buddha's belly.

Did a new EMG/NCS again (both legs and arms, face + repetition test (Myasthenia Gravis test)). This time they found mild myopathy in most of the muscles, but no signs of MND. In the paper it says: polyphasic, short-duration low-amplitude motor unit action potentials. The neurologist wasn't worried, she said that she's seen a lot of these and they don't necessarily mean anything.

May-August:
Breathing difficulties: couldn't get a deep breath. Acid reflux all the time and none of the medication helped. Had slight swallowing difficulties and had a gastroscopy and found out that my esophagus was some what atonic. Went onto an X-Ray test of swallowing that came back normal. Did a third EMG/NCS: slight myopathy in some muscles, but no signs of MND etc.

Today:
– Muscle twitches all over my body (magnesium helps, but doesn't take all of them away)
– Feeling weak in arms, hand, neck and breathing muscles (can't really take a deep breath), but I can still lift weights, exercise etc.
– Urinary problems (drops leaking afterwards)
– My hands' (left and right) fingers get tired easily when writing, drawing or playing guitar (E.G. can't play fast solos for a long time any more)
– My left leg feels weird when I walk (like walking on pillow + slight tingling)
– My left ear rings all the time
–The left side of my tongue feels strange and I have sometimes speech problems when I talk for a long time
– From time-to-time I feel dryness of mouth and sometimes I notice excess saliva production

I read this article about EMGs and if I understand it correctly, there have been some cases the EMG showed myopathy, but in real life the patient had ALS: Electromyogram report crucial for patients with suspected myositis

This is why I'm worried. Does anyone else share these same symptoms and does it sound like ALS to you?

 

[affected]

It sounds like you won't believe your doctors.
Please don't expect us to disagree with them as you have zero signs of ALS, and I do feel you know this, but just won't let go of the fear and anxiety. Please ask your doctor to help you with that.

 

[Nikki J]

What the article says is that people can have symptoms and a clinical exam that some clinicians diagnose as a myopathy but when the emg is done it is ALS. The two look very different on emg so if your emg showed myopathy you are not the person the doctor quoted in the article was describing

 

[lgelb]

Since you are showing evidence of myopathy in both the EMG and your issues, I would want to rule out inflammatory myopathies that are more treatable than others. I would think the best place for this would be a neuromuscular center, if not in Helsinki, perhaps at the Karolinska Institute. Your primary care physician or neurologist should be able to refer you.

There is no reason to still be thinking about ALS that I can see. So I would look at what is in front of you.

Best,
Laurie

 

[Leo_Rain]

Thanks so much for your comments.

Yes, the anxiety and fear play both a big role in my life right now mainly because I don't know what's going on and I don't get any more help from doctors. All they have basically done (after huge amount of examinations, blood work, CT Scans, MRIs, EMGs etc.) is sent me to therapy, which I of course accept, but it hasn't improved these symptoms, so that's why I don't think this is only in my head.

And thanks for interpreting that article for me. These things are sometimes hard to understand because of the the language barrier.

During spring my neurologist sent me to further examinations to rheumatology department, where they tested my blood for myositis etc., but couldn't find anything. Only Complement C4 (blood test) was a bit high, which is basically saying, there is still some sort of infection going on.

I'll keep looking for the answer.

 

[affected]

While you say they are not helping you, a problem for us is that you are not presenting with any serious issues. People twitch, they have parts of their bodies that feel strange, they get aches and pains and fatigue. Sometimes there is a disease process, sometimes it is just part of life, sometimes it is lifestyle - sleep, nutrition, hydration, furniture, work habits, exercise levels and types. So many things can be at play, or nothing in particular.

We simply can't see ALS in what you describe, but you can still work to improve all you can around your lifestyle and general health.