Finally back for an update and here are my results

[Snmartinez87]

Hi,

I used to post under the username Zaranataly but I lost access to the email and I forgot the password.

After almost 5 years the fasicualtions continue, the left leg atrophy is still there along with knee pain, etc.

Here are the results I was given after receiving a full evaluation with doctor Harati & Killian @ Baylor

I never went back and I never cared to find out what Chronic denervation means or what causes it.

 

[Snmartinez87]

Any input, advice, comments will greatly help.

 

[Atsugi]

Hi, Sara. Medical terms are hard for all of us. So allow me to give my interpretation in words that might help our younger members understand this, when they come visiting this post in the future.

Looks like you might have had knee problems in the past. Historically (chronically), some nerves were somehow damaged a little, but not enough to care about. These nerves are the ones that send electrical signals to make the Vastus Medialis muscle work. That muscle is inside (medial) between your legs, down by your knees. It's one of the four muscles in the QUADriceps. It is the muscle you use to extend your left lower leg forward. It also keeps your patella (knee cap) in place. There's also a tiny bit of the same problem, chronic denervation, in your right triceps, the muscle in the back of your upper arm.

Pretty good EMG report. They found nothing--that's a clean EMG. NO ALS. They also say you have some anxiety which might be causing whatever problem you went in for. Mainly, they say, you're just plain out of shape, and probably you're always tired (because you're out of shape). This is causing your muscles to bounce around in twitches. You have Benign Fasciculation Syndrome, which means your muscles twitch in a certain way (fasciculation) but it's no big deal (benign). Syndrome just means "a group of one or more symptoms that seem to go together, but are not necessarily a disease.

You're good to go. Enjoy life. Ask your GP medical doctor if she recommends you to get therapy or maybe an anti-anxiety medication.

To be clear, I am not a doctor.

PS: If your fasciculations were caused by ALS and this started 5 years ago, you'd be dead by now, most likely.

 

[Snmartinez87]

Thank you for the clear reply. I received this diagnosis in 2013. I've been on anti-anxiety medication since then! The fasiculations & slight atrophy don't give me anxiety anymore. The doctor said I was out of shape No wonder so many women have eating disorders (I was 5'7 close to 155 pounds and most of it was muscle weight)

Thank you for clarifying that my EMG is clear. I thought that denervation meant that my nerves were disconnecting from my muscles and leading me to a certain death.

One last thing; Do you recommend that I go for a follow up? What could they possibly follow up on? And if they suggest a muscle biopsy, what good would that do? The only thing that drives me nuts is my left knee pain and feeling of weakness.

So here are two pictures for everybody to see what a slight atrophy looks like.

 

[lgelb]

Since the problems are localized and you want to maintain/build muscle tone to prevent future problems, I would ask your primary care doc for a PT referral. They can create a plan, help you ease into it, and evaluate how well it's working. If/as things change, you can go back for a neuro followup.

Best,
Laurie

 

[Suzannah]

Hi,

I remember you. We had our major appointments in the same city on almost the same day. I remember being glad that nothing major showed up for you at the time.

I was diagnosed with an upper motor neuron disorder at that time, but that has since been called into question, and I have spent the last several years chasing a diagnosis all over the country. In retrospect, I think your route of never going back and never finding out more might have been a better option.

Curious - what has changed that has prompted you to circle back around to this (that's not a judgment; just a curiosity)

Take care,
--Suzannah

 

[Raymiss]

I've been noticing your responses to people are written well- pointed and quite helpful. Kudos.

 

[Snmartinez87]

Hi Suzannah,

Yes I remember you too! The good news is that we're still alive & apparently out symptoms are not worsening.

I came back because I I had to review all my medical records (due to some other thing) and I finally read the exact findings of Dr. Killian & Dr. Harati.

I contacted a doctor that is familiar with ALS and other motor neuron diseases and he said that I could have had an accident, a polio like illness when I was younger, an injury (in other words no one knows!) but I became really sad because one of the things I truly enjoy is working out.

I had hopes of giving body building my best shot BUT I can never ever reach symmetry & I will never ever be able to squat or exercise my legs as much as I'd like to. The more cut and definite my muscles become the more noticeable the atrophy.

It's kind of sad to realize that some muscles ( quads & right tricep ) can never be connected back to my nerves and that's just how it is. I'm in no way feeling sorry for myself as I know that others are suffering some acute denervation and other things but it's still sad.

I will eventually have another EMG and I hope & pray that there is no new denervation going on.

In the mean time I will get a shot of steroid or my left knee to ease the pain: