Weight loss, twitching, hyperreflexia

[April E]

Good Morning. I posted here previously, in 2017 and 2019, I think. I was having twitching, which was found to be benign by EMG.

I spent the past 6 months caring for my dad, who died at home, less than a month ago. Over this time period I lost 30 pounds, and the twitching, which I had continued to have sporadically, became constant. It started in my right elbow, then progressed to my right forearm, and then on to the side of my right hand, below my little finger. I ignored it at first, because twitching is nothing new, but then both legs began twitching incessantly as well. I wasn't able to address it while my dad was so sick, but I did go to the doctor yesterday. She found hyperreflexia in my right elbow. The rest of the reflexes are ok. Strength tests were ok. She ordered a lot of labs, they are all pretty much ok. At least thyroid, electrolytes, etc. I did notice my creatinine has dropped considerably since my labs a year ago.

Something strange I noticed last summer was that I float vertically in the pool, bobbing like a cork. I was overweight, but my cousin, who is also overweight sank like a stone. It got me to thinking about muscle wasting. I also had very physically demanding jobs for the past 28 years.

Anyway, I am emotionally, spiritually and physically exhausted from the total care and death of my dad, and now I'm frightened about these new symptoms. I don't know if the stress, grief and anxiety could cause hyperreflexia in one limb. The PCP has ordered EMG, so they will be calling to schedule me. In light of normal EMG 3.5 or so years ago, how concerned should I be?

Thank you to anyone who takes the time to read and respond. I tried to talk myself out of posting, but myself wouldn't listen

 

[Nikki J]

I am sorry for your loss

weight loss and twitching are common with stress. Uneven reflexes happen for a number of reasons and sometimes they are not reproducible but a fluke of the exam. I once had an extremely hyperactive patellar reflex ( kick the doctor kind if she had not been standing to the side) it never happened again. But even if it was “real” you know from your own experience it can be from something else. In your case it related to a spine issue last time.

please concentrate on self care and recovery as you wait for the emg

 

[April E]

Nikki J:

Thank you for the response. My elbow did what your knee did, then it did it again . It was alarming to see and to feel. I don't like it when the doctor goes "Hmmmmm".

I remember the neurologist saying something in my back could be the cause last time, but he was also surprised that I didn't (and still don't) have back pain. I got the impression he was saying, since nothing else turned up, that the minor spine issue was the most likely culprit.

Thank you for the condolences and good wishes. I will attempt self care. I just wish I knew how to put this out of my mind.

 

[KimT]

I'm so sorry about your Dad. Caregiving is a very stressful thing to go through, especially when you do it mostly by yourself. I had all kinds of weird symptoms during my Mom's and Dad's illness. Stress can really mess up a body.

Regarding reflexes. Mine have been wacky my whole life, long, long before ALS. I've had an absent reflex in my left ankle for years and brisk reflexes on both legs. They have changed and sometimes very quickly. Anxiety usually makes them more brisk, for me. Don't let the reflex or your floating/sinking in the pool worry you. If you were taking care of your Dad, you probably didn't have time to work out and build muscle. Your weight loss was probably a lot of muscle. Some people are just naturally more muscular, even if they're overweight. Don't dwell on things like this or look to them as a sign.

As Nikki said, take some time to take care of yourself. Get a massage or something that helps you relax. Meditate, socialize and get your mind off your health.

I'm more concerned about your anxiety than I am about any possibility that you have a serious health issue that can't be cured.

 

[April E]

Kim:

Thank you so much for your kind response. It made me cry.

I have the EMG scheduled for April 5th, so I'll know more in a few weeks. There was no NCS ordered.

I'll post a follow up when I have results. And thank you again for your kindness.

 

[April E]

Follow up:

They split my EMG/NCS into two appointments. The first (bilateral arms) was done today, the second (bilateral legs) will be done May 3rd. I didn't think the NCS had been ordered, but it seems it is always done with the EMG, even if it's not specifically ordered.

I don't have the results yet. The neurologist said my fears were valid, but made the comment "this looks pretty good, but I have to crunch some numbers, and we will see you back to do your legs". From what I understand, it will take a couple of weeks to get the final report.

I totally forgot to ask him about differential diagnoses, as it's obvious something is wrong. The fingers on my right hand are tremulous, and my right arm is the arm with the twitching elbow, forearm, hand, and hyperreflexia. My grandmother had Parkinson's disease, but I didn't see twitching and unilateral hyperreflexia as presenting symptoms when I did a cursory search. The neurologist seemed interested that I had tested positive for and been treated for Lyme disease. There was a 1.5 year lag between the tick and the treatment, and I only had the course of doxycycline recommended for acute disease. I was diagnosed with lupus back in 1992. My ANA was only 1:320 or 1:640 at the highest. Speckled pattern, which I believe is the most non-specific. I've had a fairly benign course. I also have Hashimoto's disease, but my TSH is wnl. I included this information on the remote possibility that someone reading this will have an "aha moment" and say "I know exactly what the problem is!".

I'm going to attempt to remain cautiously optimistic. I'm not sure what exactly "this looks pretty good" means, but at least he didn't say "this looks pretty bad". I have an appointment with my PCP tomorrow, so I will ask her about Parkinson's. I can't believe I forgot to ask the Neurologist, for goodness sake! His name is Dr. Pilcher, and he was absolutely wonderful.

Could this all be related to the care and death of my father? His cancer course was horrific, and I was there from diagnosis until he took his final breath. It just seems too coincidental that the most disturbing symptoms are all in my right arm and hand.

Thank you to anyone who took the time to read this. Any insights are greatly appreciated.

 

[Nikki J]

Stress can certainly take a toll. It also would make anything worse

if you have autoimmune issues you are at increased risk for other autoimmune diseases so that may be a direction to explore

pretty good sounds good. My emg doctor said “ I am sorry”. My sister’s ( who was not nice) said yep ALS.
crunching numbers if anything refers to the ncs not the emg though I have also heard of emg doctors saying it as their standard if protocol forbids giving results - and those doctors say it to everyone no matter what so I wouldn’t think much about it

your pcp will likely be able to see the report if you are in the same system

good luck

 

[April E]

Nikki J:

Thank you for your very thoughtful response. I appreciate your insights.

I am so sorry your sister was treated that way, by a doctor, no less. And I'm so sorry you had to hear those words.

I will post when I receive the report, and when I have the lower extremity EMG/NCS. Thank you for the good wishes.

April

 

[April E]

Update:

I had the bilateral lower extremity EMG this morning (it was rescheduled from the 3rd due to tech availability for the NCS).

The neurologist didn't say "this looks pretty good" like he did after completing the bilateral upper extremity EMG, he went straight to the "crunching the numbers" piece as he was exiting the room. The tech stays in the room while the Doctor does the EMG, so after the doc left, I asked her if that was an ominous sign. She assured me it wasn't.

Just FYI for all the twitchers out there, the Doc mentioned, more than once, while stabbing me with needles, that twitching needs to be evaluated. He said it's most usually nothing to worry about, but it's important to find out. He has a great bedside manner. I realized that I got his name wrong the last time I posted, he is Dr. Pilch, not Dr. Pilcher, an he practices in Greer, SC. I thought I would mention him just in case anyone from the Greenville, SC area needs a neurology consult.

It takes a week or two for the report to be completed and released to my PCP, so I will update then. I wanted to post in the interim to keep the thread open.

April

 

[April E]

Follow up: I received a post visit summary fronm the neurolgist via the portal that said to return if symptoms persist or worsen.

I then received a message from my PCP stating she "reviewed the report, it was normal, which is reassuring".

I'm not sure what to do next. Is it important to determine why I almost punched myself in the nose when my right elbow was tapped? I continue to experience variable fasciculations, from the almost imperceptible twinge to the big thumping ones that feel like someone is plucking a bass fiddle just under my skin. The big ones are mostly in my elbows.

My legs are now stiff and painful and my left knee is swelling. I am having to wear a hinged type brace.

I will make a follow up with my PCP. Nikki mentioned investigating a possible autoimmune component. I will ask about that.

I guess there really isn't any reason to keep this thread open. I'm not likely to find out anything new in the near future. If I end up with any type of diagnoses, I will check back and report it for anyone who may have something similar going on.

Thank you to all who took the time to read and respond. This is a remarkable community.

April

 

[Bestfriends14]

It's been 5 years thst you've been chasing ALS. Regardless of whatever your issues are, they are not ALS, so perhaps once and for all, you can stop second guessing the trained professionals.

I sincerely wish you the best. Take good care

 

[April E]

Wow. Funny that best wishes don't "feel" like best wishes. I did not second guess my PCP or my Neurologist. The PCP found the crazy reflex and referred me to the neurologist. The neurologist specifically asked about my concern and he said it was valid, he did the EMGs. I merely reported his findings, as people who post here are encouraged to do, for the benefit of others.

I have not "been chasing als for five years". These are two separate incidences separated by five years. I'm accustomed to twitching, however, my original neurolgist from five years ago did say I needed to follow up if the nature of the twitching changed. It has, so I did.

 

[lgelb]

I'm sorry about the very painful loss of your dad, April.

Bestfriends is referring to the considerable danger of fixating on facts that, while true, are not important to a diagnosis, such as the reactions of EMG examiners and off-the-cuff conversations, and giving short shrift to other facts that could be more useful.

For example, you mention wanting to pursue an autoimmune component, but you seem to be second-guessing both autoimmune disorders with which you have been diagnosed. The place to pursue these concerns would be with a rheumatologist and endocrinologist, respectively.

Similarly, you seem concerned with inadequate treatment for Lyme, but you do not seem to have consulted a Board-Certified infectious disease specialist to pursue this possibility. Please do not go down the rabbit hole of "alternative" Lyme clinicians or LLMDs, a path rife with quackery, lighter wallets, and fraud.

I am not sure why someone living in CO is getting a non-emergent EMG in SC, but someone's bedside manner is not really the point here. Facts are facts, and what I am reading is, no one on your care team has any basis to believe that you have ALS. Moreover, quoting a doctor about a general topic (twitching) when EMG referrals are made on an individual basis is unlikely to be helpful to anyone and could foster undue anxiety.

The most obvious reason for one-sided arm/hand issues that are not seen on EMG is current or past positioning issues, at work, in sleep, or at home, especially with a history of physical work. So I encourage you to pursue those as well.

If you are so disabled that you need a knee brace, I would ask your PCP for an orthopedist or PM&R or PT referral since systemic neurological disorders don't seem to be on the table. If there were a suspicion of Parkinson's from the neuro exam, you'd have heard.

As you acknowledged earlier, this thread has run its course so I will close it here. Please follow your own best instincts ahead of your fears, and focus with your PCP and appropriate specialists on obtaining a definitive clinical picture, with no preconceptions, that can help determine any appropriate treatment.

Best,
Laurie