Twitching, stiffness, and pain.

Posted by enoff0303 @enoff0303, Mar 15, 2023

Hello everyone my name is Evan Noffke and I’m 21 years old. I’m really worried and could really use some help.

My story starts in 2019 when I woke up one morning and my legs and arms were super weak to the point where I could barely lift anything or walk. Then shortly after I started getting twitches all of my body. I’ve gotten them in my arms, legs, feet, hands, face, top of my head, bladder area, and even places that are more private. They weren’t consistent and they moved around from place to place. I even had symptoms where I was becoming forgetful or my memory wasn’t as sharp as it was.

In 2020 and 2021 is when I first when and got everything checked out. My first doctor did a physical assessment and tested my strength and reflexes and said everything looked really good. He then asked me if I wanted to get an EMG done just for piece of mind and I said yes. The EMG was done on the majority of my body and everything came back normal. I moved on with my life and tried to ignore my symptoms.

In late 2021 early 2022, I was still concerned with my symptoms and was referred to the Cleveland Clinic to see a neurologist. When I met with him he also tested my reflexes and strength along with a couple other things and came to the conclusion that all of my symptoms were stress, anxiety, and depression related. He also ordered another full EMG test and told me that everything was completely normal on the test. In total I’ve had 2-3 EMG’s in the past 3 years and they’ve all came back normal.

To this day I still have twitching in random spots on my body. But the worrying symptom I’m having no is problems with my bladder and bowels. Sometimes I feel like I’m dribbling urine a little after I use the bathroom. And I have lots of pressure in my pelvic area along with lots of lower back stiffness. Could this all be related?? if anyone has anything that would be helpful that would be greatly appreciated. As a 21 year old I just want to figure everything out and move on. Thank you!

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martinaston | @martinaston | Mar 27, 2023

Did your doctors conduct a brain MRI to check for multiple sclerosis? MS can present with a flare up like that and then nothing else for many years afterwards because most people have the relapsing remitting type. Bladder issues can be part of multiple sclerosis, I believe, but it can also be part of many different conditions as well.

In any case, a lot of people start experiencing what you called the "dribbles" in their 30s onward, but age 21 does seem a bit early for that to start. Having said this, I am not a doctor and this does not constitute medical advice. Your Mayo Clinic physician you can advise you further.

Has no one else replied to this post?

lubelle | @lubelle | Mar 28, 2023

Hi Evan,
My son was diagnosed with SFN (small fiber neuropathy) after a year of going to ER due to leg twitching, back pain, leg weakness(could barely walk), tingling, balance, wet skin feeling, brain fog, and feeling like he was having heart issues. They too said all stress related and continued to prescribe benzos for anxiety. The benzos were not a good fit and caused depression for this 35 year old athlete that was barely walking.
He was tested numerous times for heart issues and was told he was fine, just stressed. He had MRI which showed no multiple sclerosis. Finally got to a Neurologist tested for SFN and was confirmed who told him not much you can do except take drugs to control symptoms. This has been a struggle as he cannot take anti anxiety pills or the standard prescriptions because he needs to be alert and functioning for his job and family.
He finds sugar, anxiety and job stress is a trigger to symptoms as well as prescription stomach antacids such as nexium (protein pump inhibitors).
He runs in high energy normally and is struggling to figure how to manage this and how to live an active life with his wife and young child.
We have no history of neuropathy in family.
I am involved in these forums to look for the “why”. What is the commonality when healthy young, non-diabetic adults are being faced with this diagnosis?
There doesn’t appear to be much interest by research institutes to find out why this is happening as long as there are drugs to treat symptoms.
I hope you continue to push for testing to help with a diagnosis and wish you a spontaneous recovery.