Exploring Symptoms at Cleveland Clinic

[Bumblebot32]

Hi again! I am writing to see if any of you have most of my symptoms.
I have an EMG (2nd) at Cleveland Clinic in Weston and am nervous.
Can any of you relate to:

Twitches you don't feel but your pants legs move

Twitches you feel but don't see

A combination of the above at the same time

Unable to see most twitches except in sunlight and leg tilted at
just the right angle

Doctors who can not see or feel them in the office

On Neurontin, Carbamazapine and Lexapro without improvement

T7 thyroid test shows levels are low - on Synthroid now

Extreme fatigue at the end of each day

Non-stop, constant as a heartbeat, twitching in the calves

2 months before twitching began having heartbeats of 160

Just a note my cardiologist said I am fine - can not explain but I am on
a beta-blocker as well. During Christmas break he saw another FSU student who was home with tachycardia too. Just found out she was just
taken to Mayo by her Mom because of "muscle issues". Mayo said Fibro.
I am trying to get in contact with her since we both got sick during break
from FSU. Strange.

I had my first EMG in March at Cleveland Clinic, Weston and was clean.
Still panicked I let a local neuro do another. He said he saw evidence of
a possible muscle disease and referred me to ALS specialist at Univ. of Miami supposed one of the world's best. Cleveland stood by their first EMG and would not redo. Miami looked at both and was not impressed by the bad EMG however he only looked and felt and could not see twitching.
I got a pat on the head and come back in July unless much worse. It has
gotten much worse and had recheck yesterday at Cleveland who will rerun
EMG since 3 1/2 months have passed. Brought my boyfriend to the visit because he has been seeing the twitches and says that no way is that
normal. He explained what he has been seeing and feeling. Of course
the Dr. did not see or feel again. FSU is very strict about failing students
who drop out during a semester for a medical leave. You practically have
to be in the hospital or disabled. The Cleveland neuro said on my medical form that I was unable to function due to strange sensations in my legs. No way was FSU going to waive the "F"s for that diagnosis. My
Mom has got a redo which says BFS / Peripheral Nerve Hyperexcitability
even thought he does not see any evidence of it. We bless him for that.
He says he needs to see my nerves hyperactive on the EMG before he
can make that diagnosis certain. Is that the same for all of you or are
you being diagnosed on your explanation of symptoms? Word of comfort - Cleveland is treating a Dr.'s wife who is testing clean but has
had symptoms for 2 years. Finally, he said, she believes that she may
not have **s after all.

I am thankful that all of you understand what it is like to make others try to understand the symptoms, confusion and fear. Thank God for this site!

 

[Garetteimi]

I have almost the exact same symptoms as you!! Some of my twitches I see and feel which I think are pretty creepy to watch. Some I feel but do not see. Thank God! My neuro actually appeared bored with my symptoms. Like they were no big deal!! Obviously because he is not the one twitching 24/7!! My docs have never seen my twitching. Its like taking your car in for repair and when you do your car runs perfectly!! I think like your boyfriend....that there is no way that these are normal, but according to all of the people on here that have them, they may not be normal but they certainly are common. I guess that once we hopefully convince ourselves that we have nothing life threatening we need to try new things to manage the symptoms. I totally feel for you that this is causing you problems with school!! I hope that you are able to relax and get some sleep because I think that the fatigue is one of the hardest things to overcome. Its hard to keep a stiff (but twitching) upper lip when you are tired. You might try some of the things that others on here have said helped. vitamins, meditation, excersise, etc. Let us know how you are doing. I personally will pray for you. -Stacy

 

[ytewestGo99]

I have twitches in my calves that I can see only in certain sunlight and not even feel. I have some that I feel but can't see. I have some that I can feel and can see. They vary from very mild to big thumpers that hit just once. They are mostly in my calves but I have them roving every where alse. Stress and anxiety make them worse. So does caffiene and lack of sleep. My neuro could not see them in his office either ... Because I was at the doctor's office and I felt more calm there, thus the twitching would decrease. But after I left and the worry came back, the twitching kicked in again. Sounds like you mey be dealing with anxiety more than anything. I'm not trying to doubt anything you're saying at all or downplay your symptoms. We all know how tough it can be, that's why we're here

This my bring some comfort:

"In the case where there are no findings of a neurological disease (usually meaning a normal neurological exam, normal laboratory values of routine blood work), a medical history of no chronic neurological diseases or trauma, the diagnosis by exclusion is benign fasciculations. They cause no damage, either muscular or neuronal, and they can wax and wane in their presence. Fatigue and anxiety can make them worse. They can present for days to years. They can be localized or generalized over the whole body. Sometimes they follow a viral illness, but sometimes they just seem to show up."

Notice that the diagnosis is made without the mention of an EMG. So, if you had a clean EMG, especially from Cleveland, which is highly respected, you should be ecstatic



"For diseases that affect the neuromuscular system in general such as carpal tunnel syndrome or weakness/numbness related to trauma like a car accident or surgery, the rule is that nerve changes will not show up on the EMG until 3 weeks after the symptoms start. This is NOT true for ALS. Research is showing that there are very subtle changes on the EMG weeks to months before the typical symptoms of twitching (called fasciculations) occurs. What does this mean? Well, when a person comes in with weakness of specific muscles known to be affected early on in ALS like the hand muscles or the neuro exam shows things like brisk reflexes at the same time as weakness and wasting, then doctors tend to think, "This may be ALS, but I'm not sure because he doesn't have fasciculations." Then this person goes to get an EMG and they can see little changes that point to the diagnosis of ALS. However, if you already have true fasciculations whether it's ALS or benign fasciculation syndrome, then that fasciculation will show up on the EMG in the pattern of a fasciculation. If it's just twitching it will NOT show up as a fasciculation, which is a specific, well-described EMG finding that most neurologists should be able to recognize when they see it. So if you're having twitches and they're not showing up as fasciculations on the EMG, then it's probably not a fasciculation."

If it were *** and you were twitching from the disease, the EMG would have picked it up because the changes show up weeks to months before the twitches even start...


Here's one last one ...

"The EMG should find abnormalities, IF present, when muscle fasciculations are pathological. This is because, fasciculations only occur late in pathological diseases and therefore the process should and is always present by the time they appear. I have never seen a report where the EMG has been normal and the patient has ALS. This would not be the case in benign fasciculations because they do not occur due to observed abnormal pathology."


I like this one for myself as well. Never seen a report where the EMG is normal and the patient has *** ...

Very glad to hear you had a clean EMG.

God bless

 

[TrisTrip]

Yup. Had everything you said in regards to twitching plus the heart problems. The heart problems are now gone.

You can search my posts to get the full story.

Good luck - although you dont need it because your fine and likely just freaking out as I did.

I dont mean to dismss your complaints or seem unsympathetic, I truely am, but you've been diagnosed - take it and run. I'll never have a second EMG, it wasnt a pleasent experience.

Stress and anxiety can cause everything you've mentioned. Even if you dont feel the stress or the anxiety, your body could be reacting nervously to some stimuli.