Follow-up Question

[JayMelen]

I was hoping not to return to this site again, thank you for being patient with me and my experience. I apologize for posting under this category a second time, I could not find where to ask a follow-up question. Based on my previous post we concluded that I am good to go and that the EMG performed at the end of Nov 2020 at Cedar Sinai was unremarkable with no abnormal findings. Since then, I sought out an independent opinion for my symptoms at UCLA neurology at the end of January 2021. The doctor who physically examined me there also stated no red flags for ALS, and likely BFS.

However since then, the arch of my left foot (same leg with the calf issues) has now started twitching much more frequently and the foot arch appears wasted and also aches. Very recently, my left shoulder and left bicep also started having what feel like twitches deep in the muscle and my left shoulder also appears to be less muscular than my right. Feels like my shoulder wants to pop out of the socket if I let it. My left foot, leg, and shoulder bicep are now always sore and feel weaker, they tire easily compared to the right side of my body.

I am scheduled to meet with the neuro muscular specialist who performed my EMG in a couple of weeks - this is what my general neurologist recommended we do next. I wanted to ask the knowledgeable people on this forum for guidance on what I should be asking the neuro specialist when I meet with him? Also, are there other conditions that you have come across on this this forum which affect only one side of the body as in my case? The diagnosis is BFS. However, this really does not feel benign to me. This month marks one year with the localized left leg calf pain and atrophy, and now the foot and shoulder/bicep seem to be following the pattern as my left my calf.

Thank you kindly.

 

[ShiftKicker]

Here is your previous thread, so folk can reference and help provide a fully informed answer, should they choose to.

Need Advice Please

I am suffering in silence and need advice please. I've tried to avoid posting here for months and thank you for reading my experience and for any guidance you can provide me. I don't want to cause panic within my family so I've been dealing with this on my own. I only discuss my symptoms with my...

www.alsforums.com

 

[Bestfriends14]

Why ask advice from members, infringing on their valuable time, when you won't believe anyone that you don't have ALS? What a waste of energy for kind people to answer your questions, for you to doubt the answer anyway. So, why don't you diagnose yourself with ALS? You don't believe doctors with 15 years of experience in this field, so that implies you think you know more than they do. Sorry to be harsh, but seriously, my husband would give anything to not have this disease. It's so sad that you can't be grateful for your health.

I wish you all the best.

 

[lgelb]

Again, ALS does not present as you've described. The most common condition affecting only one side with aches and pains is improper sleep positioning, generally ascribable to a mattress and/or pillow past their primes, or some local problem like noise, allergens, and/or suboptimal humidity.

As a general guide, if your shoulder wanted to pop out of the socket without you, it would have by now, e.g. in sleep. As to your question, I suggest you ask the neuro you are seeing about a PT evaluation. I would also ask if s/he perceives any clinical deficits or atrophy The answers to these questions will inform your question about other possibilities, but keep in mind there may not be any grand explanation apart from BFS.

"Benign" conditions can still be troubling, especially when you don't think they're benign. Think of this forthcoming visit as an opportunity to either learn why everything might still be benign, or why more exploration is necessary, but not to waste time in the "in between." But whatever you learn, act on it and keep living your life -- it's the only one you'll get.

 

[JayMelen]

I am thankful for your responses, kind or harsh. I don't want to waste anyone's time- I apologize if I have. I know I don't have ALS: three doctors and an EMG test across my arm, legs and abdomen cannot be wrong. I trust the neurologist's verdict with respect to non-ALS, and your responses have made it 100% concrete. The benign aspect is tough for me to agree with though, I know there are other possibilities other than benign and ALS. Something is going on and it is affecting me physically and seems to be progressing. I am just trying to work with doctors to figure it out and hopefully avoid any further damage to my body.

I went to physical therapy last week and the therapists said "oh yeah I see it" with respect to the left leg atrophy. She had me do calf raises, the left calf cramped after a few, but the right leg had no issues. Last October an orthopedic doctor measured and confirmed 3/8"less in left calf circumference. I can say with certainty these are real and not "perceived" muscle differences. I can feel the effects of the loss of lower leg muscle, it strains and tires out quickly.

I know that my issues are so much less than what the people here are having to deal with. I only returned to this forum because I know hundreds of concerned persons come through the site with their symptoms. I wanted to understand if based past discussions on this forum my case may sound similar to something that was resolved. I appreciate your recommendation and every minute of your time.


Thank you for taking the time to reply me. Blessings.

 

[ShiftKicker]

Hi Jay- I am so glad you recognize that you do not have ALS. I am hoping you understand this forum does not exist for anything outside of the goal of supporting folk with ALS and their caregivers. The "Could This Be?" subforum may be a huge part of your experience here, but it really only exists to answer a few basic questions about ALS- which have been answered for you, along with some recommendations.

The "Read Before" link is a condensation of all the info we can provide, and for anything more than that, you need to continue working with specialists familiar with your medical history and who can actually examine and observe what you are reporting. Anything more is just speculation by strangers on the internet.

We celebrate whenever someone reports their worries about ALS are foundless- as that means they can move on from the forum, assured there is at least one serious and terminal illness off the list of things to consider.