Want to make sense of symptoms

[magicmarley]

Hello all. First, thank you to those who are on this forum helping those like us who feel lost, confused, and scared. Not diagnosed.

I’m at 33 F. Current PCOS and high blood pressure diagnosis. History of Lyme Disease.

I got a bad virus at the end of the year. I was sick for 2 weeks, which culminated in bad neuropathy and feeling like my arms and legs were heavy yet floating at the same time. At that time, I marked 3 months on Spironolactone for PCOS, which OB said to come off due to several bad side effects.

Due to the bad virus, I’ve had thorough bloodwork done in last month and a half. Those that came back abnormal:

- high wbc
- high platelet count
- high CRP
- low sodium

Now, I’m left with symptoms that Dr. Google assures me are ALS (and it’s my fault for going out to seek this info). Not at all shy to health anxiety due to having gotten very sick with Lyme disease in my early 20s.

My symptoms are (these are not constant, they come and go day to day):

- muscle twitching, spasms: mostly on right side bicep and calf & thigh, but both sides right under my buttock.
- constant sore, tight feeling muscles: specially calves, upper thighs, and shoulder blades
- lingering neuropathy: though I do suspect this is left over from weaning off Spiro (so I’m disregarding)
- feeling of heavy, floating, “weird” muscles: very hard to explain, but feeling of being very aware of my body when this is happening. Does at times feel like it’s weakness. No failure of action, though. Most weird - usually feels worse in the afternoon. Mornings and evenings are better.
- shakiness: when the muscles are acting up, I get very shaky arms and legs. Think immediate trembling when I squat down, in example.
- aching joints: least occurring symptom, but in hands and feet when present
- pain: I’ve read ALS does not cause pain, but muscles not functioning properly often cause pain, no? This is confusing to me..

I have a follow up with PCP on Tue, but I refuse to bring up ALS to not give in to my anxiety. I want to talk through symptoms and go from there.

Any guidance is thoroughly appreciated. Thank you!

 

[ShiftKicker]

Hello-

We have two links that may be of interest to you. The first one answers many of the questions that bring people here and outlines what ALS is- and also explains why sensory issues, lack of clinical weakness and systemic issues such as high bp, dizziness, etc point elsewhere.

Read Before Posting

The second link may also be of interest to you. You don't state whether you had covid, but "bad virus" seems to be another name for that these days. Post viral issues can be long lasting and follow even mild illness.

Covid19 and Neurological Symptoms.

 

[Clearwater AL]

Magicmarley, you have a couple things going for you that point away from ALS.

First you are only 33 years old, ALS is still considered a rare disease and it is
more rare for someone in their early 30s to be diagnosed with ALS.

Second, your symptoms are not constant, they come and go day to day.…
that also points away from ALS. ALS is progressive.

And as ShiftKicker covered concerning your Post Viral issues can be long
lasting and follow even mild illness.

Going to Dr. Google didn’t help your Heath Anxiety… I hope one of your
doctors can help you with that.

Living in your 30s can be the best years of your life… I really hope your
doctors can resolve your health issues soon so you can enjoy life without
the worry of having ALS. Again, living in your30s can be the best years of
your life.

 

[lgelb]

No reason to think of ALS. As you say, there are several possible factors at play here. As you are doing, I would keep in close touch with your PCP as this all sounds systemic and given the labs there still seems to be an infectious/inflammatory process going on that may be resolving, but you want to be sure you are on the right side of it.

 

[magicmarley]

Thank you all for your responses. It is reassuring and I am grateful.

I’ve seen my PCP, and he’s referred me to a neurologist for an EMG and further tests. He’s also checking some muscle markers on bloodwork (CK and Myositis panel). Given what I know about ALS testing, I know these are some starting points, so hopefully it can be ruled out at these appointments.

Nervous but hopeful.

 

[magicmarley]

@lgelb Thank you. You are far more knowledgeable than me on this, I’m wondering if you can share some insight. Is there significant reasoning beyond suspecting ALS for a referral to neurology specifically for an EMG, along with CK and myositis blood tests? If the idea is this is systemic due to infection, would this referral from a PCP make sense for anything else? He didn’t give me a reasoning for any of it, just that it was next steps.

 

[lgelb]

A myositis is an inflammatory myopathy. A myopathy is when the muscles are the issue, not the nerves that control them as in ALS. It is generally less life-limiting and more treatable than ALS. Sometimes there are medications that can reduce the inflammation that is damaging the muscles, if that's what's at play.

EMGs are used to detect both myopathies and lots of different nerve problems, including but definitely not limited to ALS.