Toe and Finger Twitching, Calf Cramp, MDS specialist...

[Paddy79]

I have a twitch/tremor in my left ring finger and left big toe. It occurs when they resist gravity. I also feel internal sense of weakness and tremor on the left side and pain in my knee and elbow joints. I take Lexapro for health anxiety and have lost weight. My dr's believe weight loss and symptoms are due to anxiety issues.

My fear began when I went to an on-call weekend doctor about the tremor. She seemed alarmed and insisted I see a neuro.

Since, I have seen my usual PCP, neurologist, and then a very respected movement disorder specialist at a top national hospital. I could not reproduce symptoms in offices but showed video of my finger twitching when flexed against gravity and my toe. At each office, was given a neuro physical workup (no other tests). MDS noted slight briskness in reflexes but said it meant nothing in my context. Each neuro and PCP dx'd essential tremor and anxiety-induced tremor. Beta blockers were offered. They basically each told me my issue is anxiety.

Well, sometimes my toe will just shake like a leaf, usually when flexing. Same with finger. Sometimes at rest I'll feel a twinge, restlessness, or jolt. Now I'm having some cramping in my calf and knee and elbow pain, all on left side. I'm so terrified they missed something, because the cramp in calf began after my appt.

I'm ashamed of myself for even worrying about this knowing the suffering of so many. My question is: Should I press for more answers? Does this sound ominous? I am guessing neuro and MDS tested and would know better than I. They did a lot of different exercises and sensation tests, the meaning of which are lost on me.

I have no trouble performing daily tasks; all symptoms are the above. Yet, I feel scared. Thank you for your time.

 

[KarenNWendyn]

It’s great you got the same response from two different neurologists and your PCP. Sounds like there’s your answer.
ALS doesn’t cause tremors or twinges. The fact you can still do everything you did previously points away from ALS. I don’t think you need to fear anything more ominous or press for additional answers. If new symptoms arise, you have good doctors you can talk to.

Best of luck to you. The good news is that you are in the wrong place here.

 

[Paddy79]

Karen,
Thank you so very much for your speedy reply. Is painful cramping a symptom? I'm sorry; just trying to clarify based on the "new" symptom I have.

 

[KarenNWendyn]

Painful cramping is a very nonspecific symptom. Make sure you’re keeping well hydrated. Stretch your fingers periodically.

 

[Paddy79]

Got it. OK. Last question before I say my goodbyes.
Which symptoms should lead me to return to MDS? I am relieved that twitches/tremors are not an early symptom, as that is what drove me to seek help after having that scary initial visit. It's hard because of my anxiety; hard to distinguish between what is real and what's psychosomatic.
Many thanks. This forum seems very patient and compassionate.

 

[lgelb]

As with most illnesses, what should lead you to seek care boils down to changes in function (inability to do something that you used to be able to) , or, of course, fever or pain that degrades your function and does not improve, though that has nothing to do with ALS.

Every PALS here experienced an "inability," not just a change in perceived function, early in their course.

Best,
Laurie

 

[Paddy79]

Thank you! What an informative group. Time for me to move on and not fixate.

 

[Paddy79]

Hello! I did just want to pop back because I obtained a very informative, detailed post-visit report from my MDS. I am a bit confused by two things: positive Hoffman's sign bilaterally and mildly brisk reflexes. As you can see in the report, he doesn't seem concerned at all. Dr. Google has me thinking else-wise. I do plan to email him for clarification, but he's also very busy (takes over a year to see him), so thought someone here could elucidate. Could this become an issue down the road? I didn't tell him I'd also lost 15 pounds recently, though my PCP chalks it up to untreated anxiety. Thank you again!


A 40-year-old
right-handed woman here for an initial consultation regarding
tremors. She reports that her whole life she has had
slight bilateral postural tremors of the hands, but this was
never a problem for her. However, she also has had long-standing
anxiety and this became worse in August in the setting of kidney
stones and a kidney stone procedure and so she was put on Lexapro
a bit more than two months ago. Soon after, possibly days after
being on a higher dose of Lexapro, she noticed worsening of the
tremors of the hands. However, they continue to occur only when
she would hold the hands up, especially if she would flex them,
at which point it may occur in just the ring finger with very
mild tremulousness. She would notice also a similar mild tremor
if she would hold the leg up in her big toe. These tremors could
occur on either side, but more so on the left compared to the
right. When she is not anxious, she does not notice the tremors
at all even when she holds the hands or foot up. She notices no
weakness, numbness or tingling. No coordination deficits. No
stiffness. No gait difficulties. No changes in vision or
cognition.

She saw a neurologist, Dr. X, who told her she
may have essential tremor. Her primary care physician, Dr. X
thought it was mainly her anxiety. She states that thyroid
function tests were checked and were fine.

In addition to the Lexapro, she takes a low dose of Klonopin, 0.5
mg or sometimes just 0.25 mg on average perhaps every other day
and this greatly reduces the tremors to the point that they are
not noticeable after she takes it.

REVIEW OF SYSTEMS: Notable for the issues outlined above and
otherwise was negative. One exception is that she tends to sleep
with her elbows bent at night and also works at the computer with
her elbows bent and notes sometimes she feels a little bit of
soreness in the elbow that sometimes seems to extend to the ulnar
side of the hand, but this is minor.

PHYSICAL EXAMINATION:
GENERAL: Well-appearing woman in no acute distress.
Vital Signs sheet entries for 12/06/19:
BP: 138/92. Heart Rate: 100. O2 Saturation%: 98. Weight: 134.9
(With Clothes; With Shoes).
NEUROLOGIC: She is alert, oriented and attentive. Language is
fluent without paraphasias. Good recall of recent and remote
events. She has full visual fields. Normal extraocular
movements. Face, palate and tongue move normally. Hearing is
intact to normal voice. Strength is 5/5 throughout. Sensation
is intact to pinprick and proprioception throughout. Reflexes
are brisk, but symmetric and without clonus with minimal jaw jerk
present and trace Hoffmann's bilaterally. Toes are downgoing.
Rapid alternating movements are intact to fist opening-closing
and finger taps bilaterally. No dysmetria on finger-nose-finger.
I saw no rest tremors during today's exam, but she did have a
very slight tremor of a few millimeters in the left hand on
finger-nose-finger. Also, when she held the hands out and flexed
the wrist on the left, on one occasion there were a few seconds
of a mild irregular tremor of the left ring finger. She also
showed me a video showing a similar tremor in the left ring
finger with the hand held up flexed at the wrist and similarly in
the big toe on the left with the leg held up. She could arise
easily from a chair without using her arms. Normal narrow-based
gait with normal arm swing and posture. She could tandem well
and Romberg's was negative.

ASSESSMENT AND PLAN: She has a history of tremors as
above. I can think of three possibilities of what this may be.
I suspect it may be enhanced physiologic tremor triggered by her
anxiety. It is also possible that Lexapro is a factor, although
in looking at adverse effects listed for this agent, tremor is
not a common side effect. In addition, given the positive family
history, this could be very early mild essential tremor. I
reassured her that for any of these possibilities, it was not a
degenerative condition and so I did not see a need for additional
imaging or other evaluations. She has no evidence to suggest
Parkinson's disease. She was worried about ALS and I reassured
her that she does not have ALS. Also, no evidence for multiple
sclerosis by history or exam. The mildly brisk reflexes are not
of concern in the setting of normal strength, normal tone and
normal sensation and coordination.


I do not see a need for further evaluations at this point, but
asked her to contact me again if there is any significant
progression of the tremors or any new neurological symptoms.

 

[Nikki J]

He wasn’t concerned because those are normal variants when found bilaterally. The conclusions are pretty clear no evidence for ALS etc and no need for further testing

 

[Paddy79]

Got it. Wasn’t sure if it was a “predictor” for issues down the road. Many thanks.

 

[Paddy79]

And for my edification: Could anyone explain when weight loss occurs with ALS? Is it a first symptom or a result of other issues? This would be helpful for me to understand. With many thanks, Paddy.

 

[KarenNWendyn]

There are numerous reasons why a person might lose weight. ALS is not your issue. Please continue to work with your doctors on your health issues. We wish you the best, but we are not a general health forum.

 

[Paddy79]

Thanks, Karen. Good luck to all of you.

 

[Paddy79]

I wanted to pop in here because of the sad news about Pete Frates. I am confused about something in his story.

I think the answer from one of the experts here might put a lot of people's minds at ease, or help explain their symptoms.

In Pete's story (link here: My Journey from Baseball Star to ALS Patient, 75 Years After Lou Gehrig), he wrote:

It all started with some twitching in my upper body and arms. Drinking some Gatorade or throwing a few more bananas into my diet would surely fix that.

I know many people come to this board concerned about twitching, from what I've seen in my brief time here. Frates didn't begin with a lack of ability; he began with twitching. I think people immediately worry about twitching as it's so visible and non-specific. Yet the forum says that twitching is not a sign of ALS (unless I misunderstand).

Can you explain? Others may benefit too. Thank you.

 

[Nikki J]

Pete’s twitching was hand in hand with decreased performance on the baseball field ( due to weakness). The problem with reading snecdotal comments is that you do not hear the whole story. This has been asked and addressed here before

closing this thread. We have addressed your issues