Worsening Symptoms

[Jhully]

Hello. I am a 49 yo woman with concerning symptoms. I saw a neurologist, an als specialist, on May 9 for EMG and NCS after experiencing fasiculations that started in my calves on April 24. EMG was normal except for increased insertion and fasiculations in r deltoid. The fasiculations have since spread everywhere, including my tongue this week. Hands and feet jerk at night. Electrolytes, thyroid, copper, vitamins all normal in April. He believed bfs at the time and suggested magnesium which has not made a difference nor has increased calcium, b and d vits or sodium/potassium such as with LMNT (powdered sodium/potassium).

After consulting with new tongue symptoms, the neurologist just said tongue fasiculations are not normal in bfs and asked me to see him in clinic for new assessment. My appointment is next month. I’m beside myself with worry not knowing what else this could be. My muscles easily fatigue e.g, blow drying my hair my arm gets light cramps and calf and feet muscles often cramp upon movement but I’m still able to function.

Has anyone had a similar experience?

 

[Nikki J]

There are actually plenty of people with bfs who report tongue fasciculations. You will find them here if you search and on the various sites for bfs/ twitches. We actually had one poor soul here who had tongue fasciculations and some general neurologist told him it was ALS. He then saw an ALS specialist who did a proper workup including an emg and diagnosed bfs. The original neurologist was reprimanded

Everything you say is reported by people who end up diagnosed with bfs

 

[Jhully]

Thank you, Nikki. I will post after my exam next month with results if that would be helpful for anyone? I also wonder if my newer lack of hormones contributes but research mostly says no. I came upon this forum and not certain of protocols so if sharing is unproductive or simply annoying, I can leave it here.

Is there a preferred research or other charity for PALS on this forum? Regardless of my results, I’d like to help advance research and ideally solutions if I can. Sending sincere and supportive thoughts to those living with ALS and those who are caregivers to their loved ones.

 

[Nikki J]

We always like to hear follow up results.

Thank you for your kind thoughts and wanting to help with research. My preference is to donate directly to research centers. There are certainly ones connected with the big university affiliated clinics. I give to my clinic Mass General but there are certainly ones near you. i have seen papers from UCLA ALS researchers for example

Good luck

 

[Jhully]

Quick follow-up: I was able to see my neurologist this week. He did a full physical exam which was normal except weak downward response in plantar reflex which was a change from exam / months prior and dtr +3 in pataller which was similar to prior exam.

He reviewed videos of my tongue fasiculations and said it was just one motor neuron and not consistent with ALS. His suspicion is that the newer jerking of hands and feet are a side effect of Celexa and offered gabapentin if I wanted to try it and to talk with my psychiatrist. I’ve not had issues when on it previously but…

His notes/comments were that neuro exams and prior EMG are not consistent with nerve damage or motor neuron disease. That even done early following fasiculation onset, he would expect to see some nerve damage on the EMG. He recommended a repeat EMG in 6 months and to call if any notable changes before. So that’s what I’ll do. He still believes bfs and not certain about the tongue cause (I understand some people with bfs experience this, just sharing his thoughts).

Hope that’s helpful information for others.

Looking into UCLA for opportunities to financially support research and solutions. Sending love to all here.

 

[lgelb]

Thank you for circling back, and I'm sure UCLA will be appreciative of your support.

SSRIs can cause twitching, and they can also change sleep architecture, which is associated with fatigue, perceived weakness, and stiffness, along with irritability and less focus, among other things. Basically how you feel after an all-nighter.

Checking out your sleep with a wearable if you haven't may yield useful information.

Do you mean he was offering gabapentin to bridge coming off the SSRI? They should not be taken together due to a greater risk of seizures and other potential issues, without good reason.

Some people are sensitive to SSRIs as a class, others only to one or some. If the SSRI was helping you overall, it might be worth experimenting a little to see if you can stay with the class. But if not, there are other antidepressant classes to work with.

 

[Jhully]

Thank you for all the wisdom. I think he was offerring gabapentin along with celexa so appreciate the warning there. I asked him not to put the prescription in as I wouldn’t take it at this point. Ive taken SSRIs on and off for 25 years and never had a side effect. But also never took them as a 50 yo woman. I’ll wait to talk with psych about this at my next appt and go from there. So many off body changes at this age it’s hard to know what’s causing what. What’s normal, etc. Maybe I need an all nighter! Not sure I could handle that though!

In the meantime, trying not to be overly body conscious and live my life. (I write as my foot is going bananas with fasiculations and now my right lower back)! Will repeat EMG in a few months time and hope it remains normal.

Comfort and love to anyone reading. Fine to close this thread although I’ve enjoyed chatting.