Seeking Advice From PALS and/or Recently Diagnosed

[Tarheel2005]

Hello -

I have been experiencing neurological symptoms since around January. It started out very sensory in nature but over time, there have been some issues with my left hand/arm that have created some other concerns. Let me state the following because I am looking for insight as to what my next steps might be from folks who have been through the long arduous diagnostic process.

If I had to describe my symptoms broken down by most prevalent they would be the following:

1.) - January humming/buzzing sensation in hands and feet. This occurred more in the beginning and has slowed down a bit in the last few months
2.) Around April I started experiencing a numbness in the forearm hand area. Not major numbness but just a little bit on and off.
3.) Mid April, I started having pain/sensitivity near the ulnar nerve so I thought cubital tunnel or something like that
4.) Mid april elbow region started twitching and did not stop until I was given a muscle relaxer (twitched 24 hours for 12 days).
5.) Late April I started noticing some oddness with my fingers (mainly thumb and ring finger. It felt like they were moving slower/catching (almost as if the connection from my brain to my hand wasn't working properly)

I have been seen by 3 different neurologists:

1st private practice neuro. not neuromuscular but had been EMG'd by his partner who did a neuromuscular fellowship at Emory
2nd Emory neuromuscular neurologist Dr Vita Kesner
3rd Autoimmune neuro at Mayo Clinic

I have had 4 NCV tests/ 3 EMGS in this order:

1.) 2/19 - NCV test only - neuro said neuropathy/radiculopathy
2.) 3/19 NCV/EMG by Emory neuromuscular doctor who also does clinical rounds at Emory ALS clinic - she stated normal/refuted the diagnosis of radiculopathy and neuropathy

Around 3/28 started experiencing numbness in left forearm and also nerve sensitivity along ulnar nerve. Mid April, twitching in left arm near elbow (12 days/24 hours). The twitching subsided after a muscle relaxer was taken.

Went back to first neuro, showed him twitching, he confirmed "fasciculation" still said, I don't care what other neuro said, it's radiculopathy.

End of April, started experiencing issue with thumb and ring finger. Had trouble lifting them while typing. It was almost like a slow uncontrolled movement. Like my brain couldn't get my hands to do what I wanted them to do.

Went back to first neuro he said okay, we will EMG your arm (3rd EMG 5/3). He said was normal but showed reinnervation on trapezius indicative of radiculopathy.

By this time - totally confused so I reach out to Mayo.

Go to Mayo 5/21 - They do 4th EMG by neuromuscular doctor on 5/25. EMG my entire left side including paraspinals. Normal.

By early June, the issues with my fingers are getting worse. By mid june, upward flexion of wrist is becoming hard. Again - same situation, like uncontrolled, slow movements...like they wont move the way I want them to.

I go to a hand doctor. He says problem is not your hands it's neurological. I show him all my EMGS. He says, they need to do a pre and post activity EMG or even EMG right arm and compare to left.

At this point here is all I know -

Still having fine motor issues with typing with uncontrolled slow movements in fingers. This is now happening to my wrist. I am also experiencing severe sensitivity along ulnar nerve. entire area of my forearm down to wrist fingers has some type of pain. I now cannot tell if my thumb pain is because I am straining it by overusing it when it has challenges with upward flexion.

I have compared my NCV motor tests side by side (attached) and even asked the neuros if they are within normal range but the numbers are slowly dropping over time, could that be indicative of something.

Is there anything PALS can glean from this or any insight they may have to anything I should ask the neurologist when I see them on Monday?

Do ALS symptoms progress so slow that even though you feel the symptoms, they're just to faint to be detected on an EMG/NCV test?

I do plan on asking the doctors these questions as well but they are so cagey. It's like they never want to answer me directly...

 

[ShiftKicker]

Mod note- previous threads:
https://www.alsforums.com/forum/do-i-have-als-als/40899-questions-those-who-care-read.html
https://www.alsforums.com/forum/do-...ou-feel-weakness-emg-will-detect-process.html

Tarheel, I'll admit, the above HUGE post is hard to follow and all the extra explanation and thoughts and expositions make it hard to parse exactly where your descriptions end and your questions start. I understand the need to provide details, but this is a gargantuan wall of text with a lot of superfluous detail.

Are you able to provide a short list of one or two sentence direct questions you would like answered? You're talking about mortgages and things the members here don't need in order to provide info directly related to symptoms.

Thank you

 

[Tarheel2005]

hey there - I revised as much as I could. I hope that helps. Sorry. I was trying to make it as easy as possible for PALS to read without difficulty. I am a wordy person by nature. I hope I was able to shorten and help make it easier

 

[Tarheel2005]

I should add, I have asked for MRI of arm and ultrasound. I thought maybe there was inflammation of ulnar nerve or something that wasn't necessarily showing up on an EMG but might be visible my looking at the nerve. No one will give me one. I literally just want to have some normal function back in my left side. I am now wearing braces on my elbow and wrist thumb to be able to work on the computer. I have trouble pushing the button down on my kids car seat to latch the straps and I am even having trouble picking up my kid because of the nerve issues in left hand.

I'm just wondering where I go from here or what questions I can ask neuros to get them to think more outside the box. It's not normal for one limb to just slowly over time have issues and just chalk it up to "aging" or an injury that cannot be explained. This makes zero sense to me. Maybe PALS have some experiences with their diagnostic process or can tell me more about EMG sensitivity. I keep wondering if it's just too soon for anything to come up even though there may be something there.

 

[Vincent]

Tarheel, Take away from your post everything that "feels like" , "pain", "numbness" or any other sensation. There's not much left. ALS is a disease of the motor neurons, leaving the sensory nerves untouched. My symptoms began with foot drop, the only sensation associated with it was the sound of my foot slapping the ground. I don't see ALS here.
Vincent

 

[Tarheel2005]

Vincent - thank you for taking the time to reply! That was awfully thoughtful of you. I appreciate it. I know it was a lot to read. I’ll keep that insight in my back pocket. Im headed back to the neuro this Monday armed with an arsenal of questions this time. I tend to find myself being so embarrassed to ask them bc I dont want to question the doctor or make them feel like I know more than them. But we gotta put our heads together and figure out what the heck is going on with me. If it’s not orthapedic, not hand related then it has to be the nerves...just not sure why we cant pinpoint it with today’s fancy technology. Had my second MRI on Thursday with contrast on a 3T machine. Last time was on a 1.5. Maybe that will help them. I’ll still be pushing for an MRI of the arm or even an ultrasound. Maybe the Emory doctor will help me get that after they see all these braces on my arm. Thanks again for your kind feedback. Wishing you a day filled with peace. I used to live in California. I miss it so much.