Bulbar issues, fatigue

[GreyWanderer]

Hello!

First of all, I am really grateful for all the help of you, PALS and CALS, provide to us that are still lost in our medical conditions, and I respect you immensely for that.

In August, my first symptomes occured. After a spasm that woke me up, my middle finger on my right foot started feeling weird when pressure was put on it, then brain fog and headache. I was diagnosed with Lyme and went through medication that finished in Nov. No real improvement happened.

During the treatment I started to have weird feelings for cloth on my skin, itches over my body and face and twitches in my right leg, that eventually spread throughout the whole body - hands, feet, face, around mouth, abdomen, numbness... nothing indicating ALS.

Then my right arm went weirdly fatigued. I have about the same strength overall, but I started switching hands with my phone or cup of tea. Like I lifted weights and get exhausted, it is also a but painful, but I do not do much sports. That spread then to my left arm and right leg.

And to the worst. I started having really hard time speaking along with a feeling of someone suffocating me by hand on my neck and also that there is something in my throat all the time. My speech is not perceived slurred, but after couple minutes talking, my s an c start to come out badly and I am reluctant to continue talking, like my tongue and jaws are exhausted. Sometimes when I breath, saliva picks the wrong pipe and I caugh a lot. I swallow normally. There are better and worse days or hours, depending perhaps on what I wear on my neck. What is scaring me most is breathing. Whenever there is a hand or a heavier blanket on my breast I feel like I can't get enough air in.

My thyroid tests came in normal, ms is excluded by lumbar, emg needle of my worst leg came in "clean" (I had the speech problems by that time). The neurologist said that the results of emg do not support ALS, but there is no commentary on the needle test, just graphs. Conduction was all fine. I am 27, too, so no neurologist I have seen suspects it. Rheumatology/allergo tests will be done soon too.

I try hard to think it is lyme damage and anxiety, as I am really scared since the time ms was suspected (months now) but the effects are very physical and they seem to worsen.

Does anyone have similar experience?

Thank you for any bit of time you could share with me and I wish everyone great holidays.

 

[lgelb]

Wanderer, I don't see anything of ALS in your post. Both Lyme and the medications used to treat it can have lingering effects, so I would focus on what makes you feel better rather than a further diagnosis (past what you already have scheduled) and see where that gets you.

Diet, hydration, sleep, movement and social activity are all important. Deep breathing/meditation, stretching types of bodywork, and massage are also considerations. Your body has been through a trauma, and likewise your mind.

There are many of us who don't like material on our neck -- for me, it does get worse in winter when there is dry air and everything is kind of itchy. Try a lighter blanket and maybe a loftier pillow that still fits your neck (like latex).

I get that you are scared and so you might want to talk with someone closer at hand than us (a friend, counselor, pastor, what have you), but there is just no reason to think about ALS -- a very good thing.

Best,
Laurie

 

[GreyWanderer]

Laurie,

Thank you for your wise words and for checking from experience.

I have noticed some threads with similar issues, but not much of them reached a full "what was it" conclusion. I will get back after the rest of the tests with an update for other worried people.

Until then, I will go down the road you proposed. Thanks again!

 

[GreyWanderer]

An update from me:

Second clean EMG, not even fascis. After a second and a very thorough test, I am free of this diagnosis completely.

I will contine my search as I am not actually getting better, but if I eventually get to continue my life, I've promised to God I will join the research forces fighting this terrifying disease.

Thank you.

 

[GreyWanderer]

Another update for other wanderers without diagnosis:

Detailed immunoblot showed 3 antigens specific to auto-immune myositis of yet unsure kind.

Neuros are baffled, as I do not have elevated CK, nor CRP, normal sedimentation, I have two times clean EMG, and no clinical weakness as well as lateralized issues. However, there are many flavours of this disease.

For symptome checkers: My muscles progressively ache, I itch without rash, and I feel fatigue in my arms, calves, hands and feet and neck (no actual disability), I still have difficulty speaking for longer time.

I have arranged some appointments with ALS researchers in my country, and I will keep my promise after prednisone kicks in/hopefully it does...