Remaining symptoms: abnormal gait, weakness on examination, decreased reflexes in my legs, ankles that were weak and rolled inward and a side of episodic breathing difficulty…

I’ll lump these last symptoms together…

Previous posts about symptoms are found here:

Signs that were always remarked on at appointments:

Abnormal gait was obvious inside and outside of medical exams.

During medical exams, physicians remarked on my decreased reflexes in my legs, weakness especially in my shoulders, arms, trunk and legs…limb girdle distribution.

My trunk muscles were weak.  I arched my back a lot (more pronounced when I was really tired), I swayed my hips and almost overlapped my feet/one in front of the other sometimes (more pronounced when I was weak)… My mom called it an “Olympic Walk”…whatever that meant?  I still don’t really know… Perhaps I’ll google it!  Lol

I also kind of slapped my feet when I was really tired.  I believe that’s called foot drop.

I had scary episodes where I couldn’t catch my breath.  I felt like I couldn’t get a good deep breath!  I was getting air in my lungs but it was far from satisfying me.  I’d become lightheaded and my lips, face and hands would start to tingle.  I tried to focus on not panicking.  Which is hard when you feel like you’re suffocating.

I was tested for asthma but that was not it. I was prescribed Ventilin Rotacaps (salbutamol sulfate) to inhale twice/day to see if it helped prevent the episodes.  I used up the free samples provided to me and then stopped.  I didn’t feel as if they helped.

Ironically, I remember thinking I had more energy than ever during those weeks!  The stairs were easier at school!  I walked home without wanting to cry! I remember the thought passing that perhaps the inhaler was the reason? But thought it silly and dismissed it. Why would something I’m inhaling help my muscles?

I didn’t think of it again until almost 10 years later when I was prescribed Proventil Repetabs (extended release oral albuterol)… I thought: Hmmmm… Albuterol is for asthma.  I used to use a type of asthma inhaler… Why is this going to help my muscles???  Once it started to become clear that it was working and decreasing my symptoms, I remembered feeling similar on the inhaler years prior!  If only I had continued to use them???

Related to my symptoms… Nausea, sweating, shortness of breath and racing heart rate when I was extremely fatigued and trying to push myself to do even simple tasks like put my hair in a ponytail 😢

Tremors when my muscles were over fatigued and I was trying to force myself to do things…

Knees buckling and giving out on me while trying to walk or climb stairs when fatigued…

Symptoms are only the beginning…not enough to get a diagnosis.  I had to undergo extensive testing to finally reach a diagnosis!  Those tests will be discussed soon…


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