Hand Tremor/Clonus, Spacisty in Both Hands, Vibrations/Tingling in Feet & Fascillations in Feet/Legs & Upper Body

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mhewitt2222

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Hello,

I started having finger pain and tremor or clonus in my right hand 11 months ago (still there and has since gone into my left hand). Visited a respected neurologist institution in Minnesota back in July of 2021. I got an EMG performed by an outside clinic after this appointment (didn't want to wait months to get one from the Neurologist place). It came back clean with an indicator of carpal tunnel in right wrist). Thought I was done with that all and could move on with my life! The terrible pains in my knuckles and hands kept getting worse though (that have bounced around but are mainly in the middle three fingers on both hands).

Flash forward to January of 2022 and I start getting vibration (like the purring being discussed in some of the threads on this site) in both feet. Just thought it was from a new med I was taking to deal with the pain I'm my neck and back. Stopped taking that med for 3 1/2 months now and they are getting worse! They currently go from tingle/popcorn/vibration. I didn't realize that when looking closely at my feet that a lot of these are visible fasciculations! They have since climbed up into my calves and legs & buttas fasciculations. I also hand a constant fasciculations in my right deltoid for 3 weeks but has since disappeared.

I currently get really bad muscle jerks in arms and legs most of the time but mainly when trying to fall asleep. I don't sleep well and I have lost 20% of my weight in a 2 year stretch.

No visible atrophy I cam see or clinical weakness I notice but my balance has been bad and I have fallen several times.

Wondering if anyone would PLEASE help shed some light on thoughts on this?

I had an MRI on my spine and there isn't anything there that could be causing the feet issues. I have a 2nd EMG schedule for Monday on both arms and legs.

After reading almost everything on this wonderful forum the past 2 months I decided to get the courage to post this for any guidance?

Thanks for the help in advance and will always pray for ALL PALS & CALS!

GOD BLESS YOU ALL
 

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I can't shed light on what is happening but can tell you that this is not how ALS happens.
I would expect they would do sleep studies with you and look at systemic things.

Sorry, as this is an ALS forum and we are not doctors, you need to keep working with them to solve this. Only a doctor can diagnosis clinical weakness, you can't test yourself.

I hope you get some answers soon and back to full health.
 

mhewitt2222

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Thank you very much for the response and ideas! Greatly appreciated! No Neurologist has told me based on their strength tests that I have clinical weakness. EXCEPT the first Neurologist I saw who specializes in ALS said I have weakness in my pinky finger?
 

affected

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That's great news then, keep working with your doctor, but don't keep asking about ALS, it can really slow down find the correct diagnosis as you want the doctors to follow the facts of clinical examinations and test results, not your concerns or fears.
All the very best.
 

Clearwater AL

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mhewitt, Your situation is unique... I've seen neurologists and none have
tested one finger of my hands separately. Your neurologist is unique
or absolutely thorough.

I too hope you get some answers soon.
 

KimT

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Hello,
There are many things that can cause your symptoms. Hopefully, on Monday, your neurologist can help sort things out.
I wish you well. People online have different experiences so please don't rely on us for confirmation one way or another.
Do let us know what your neurologist says.
Best wishes.
 

mhewitt2222

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Hello All,

I'm giving an update on my scenario.

Summer 2020 - I had bad neck pain in the left side of the middle of my neck. Got an MRI done and it revealed a compressed disc (C4-C5).

September 2020 - I met with a Neurosurgeon who recommended spinal fusion/discectomy of C4-C6.

December 2020 - I had surgery

First three months were great! No pain.
Months 4 through now nothing but more pain.

I started to have a tremor in my RIGHT HAND fingers (pinky and ring finger). Then it progressed to pain in ring finger and tingling in base of pinky finger. Went back for a follow-up MRI and everything looked good from the surgery aspect. Pain then progressed to my middle finger. Went to see University of Minnesota Neurologist. He ordered my FIRST EMG of my right arm (Spring of 2021). Everything came back completely normal.

Then a couple of months down the road I started to have the same thing going on in my RIGHT HAND happen in my LEFT HAND. Fast forward to January of 2022 I started to feel my feet starting to get numb very easily. Then after a couple of weeks of that my feet started to tingle/pop/vibrate and I noticed fasciculations in the bottoms of my feet and sides of BOTH FEET. I then started to see fasciculations in my leg muscles.

I went to another Neurologist who order a full spinal MRI and and upper arm NCV/EMG (SEE FIRST TWO ATTACHMENTS). EMG was clean but NCV showed left ulnar nerve issues and bilateral mild Carpal tunnel.

They then did a minimal (my opinion) EMG of my LEFT LEG. which was totally clean (both EMG & NCV).

I went to see an orthopedic hand specialist for my finger pain and the ulnar/CT and they performed another EMG on both my LEFT and RIGHT arms. That came back clean on the EMG and showed only RIGHT CT.

I have since had gait problems/hand weakness/bad finger pain/neck pain/tingling in feet/back pain

The MRI revealed:
  • At C3-4 moderate to severe narrowing of the spinal canal. Moderate bilateral foraminal narrowing. Potential impingement C4 nerve roots.
  • At C4-5 mild right and moderate left neural foraminal narrowing. Potential impingement left C5 nerve root.
  • At C5-6, mild right and left neural foraminal narrowing. Potential impingement left C6 nerve root.
  • At C6-7, progressive disc degeneration. Modic type 1 endplate changes. Mild narrowing spinal canal. Mild to moderate narrowing of the left neuroforamen. Potential impingement of left C7 nerve root
I live about 90 minutes from Mayo Clinic and i am trying to get into there to be seen to try and get answers to why I am having feet/leg issues and hand pain. I have Hyperreflexia throughout my body with spasticity in upper and lower regions.

I also get sharp pains that shoot in my extremities.

I cannot get an answer based on tests and imaging that explains my symptoms. Nobody will tell me "THIS IS WHAT COULD BE CAUSING YOUR ISSUES"???

Sorry for the long story here but trying to get opinions on:

1. Who should I try and see next to get answers ?
2. Do I need to get an EMG done on the muscles in my feet? Was the LEFT LEG EMG enough muscles tested? Why didn't they test my feet muscles where ALL the symptoms are?
3. Why didn't they test my middle three fingers on the upper extremity EMG?
4.should I have muscles in my back EMG'd? (Could ALS start in the neck and lumbar region and cause all my back/neck damage)?
5. Any other advice?

Thanks ALL and apogize again for the length of the post and appreciate the WISDOM that is on this forum. God bless you ALL. I'd give ANYTHING to fins a cure for ALS! ANYTHING!

THANKS!
 

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affected

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I'm so sorry you are still in this situation.
We have said pretty clearly - we are NOT doctors. We are people with the terminal illness ALS, or people caring for someone with ALS.
It is not appropriate to ask us to second guess or argue against doctors.
I truly appreciate your concerns, but we are not the appropriate place to help you.
You don't have ALS symptoms, your EMG is clear.
1. We don't know
2. No
3. They didn't need to
4. No
5. Discuss this with a doctor you trust - do not continue discussing in online forums with people you don't know.

All the very best.
 

mhewitt2222

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I'm not asking for a diagnoses. Just if you've seen someone else's situation similar to mine.
I was asking basically two things:

1. Based on what you all have seen and experienced should I test more muscles for ALS?
2. Based on what you all have seen again - should I try and see a ALS specialist?
Got my answers from you and appreciate the help!

I know your not doctors. Just trying to get some guidance from people on what type of doctor to see and if ALS behaves this way. I apologize if that is out of line and will kindly leave the forum.

Thanks
 

Nikki J

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I have had many emgs for research. I have never anyone emg my feetor fingers. The muscles above them would show issues if you had ALS affecting them. So no

if the exam showed only general hyperreflexia and no clinical weakness pr other issues coupled with a normal emg I see no reason to seek an ALS specialist. if the current doctors can not explain your syr which seems to include a fair amount of sensory complaints ( further supporting not ALS) I would return to my pcp Perhaps a rheumatologist opinion might be helpful. I would ask about that
 

Bestfriends14

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What type of doc you should see depends on what your GP suggests. Your first EMG was sufficient and it will be up to your doc to guide you as to next steps. ALS does not present as you describe, which is why your EMG, clinical tests, and non-ALS symptoms got you cleared of having this disease.

Best of luck to you and take good care
 

mhewitt2222

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I'm sorry to be back here but I am in need of an ALS specialist in Minnesota. I know people here are not going to 2nd guess doctors but just show how each one goes a different direction.

I have now been diagnosed with clinical weakness (by a neurologist) in my legs and fingers. I have a positive Hoffman sign on my right side only. My babinski is downswing. I have positive clonus in my right leg. I have also been experiencing more muscle twitching everywhere and involuntary jerks in legs and arms. Been also having high anxiety and excessive tiredness. Also been having a lot of trouble walking (diagnosed as well). I have brisk reflexes everywhere it's been checked (they have not tested bulbar region (although I have post nasal Drip with a cough and sometimes slur my words.

I took the advice and never mentioned ALS to the doctors and I've been sent down several different paths.
1. Restless Leg Syndrome & Sleep issues (Minneapolis Clinic of Neurology)
2. Neuropathy = negative (Mayo Clinic)
3. Spinal Stenosis of the neck (they want to do surgery - I had Mayo Clinic confirm and they agree) The Noran Neurological Clinic.

As you can see different neurologists try different things and push to different areas. I feel like we have to be our own advocate when we see these doctors because they are so busy and just want to play the elimination game and get home. One of the leading clinics in the world (Mayo) wants to do surgery on me and it has a 50% chance of helping. I'm sorry we put way too much faith in these institutions that they have our best interest in mind.

Case in point:
I've had brisk reflexes in my lower extremities for sometime (since post surgery).
1. my symptoms started in the right hand (tremor/tingling and I felt finger weakness)
2. Moved to the left hand (same symptoms)
3. Moved to my feet (Both) with: fasciculations, tingling, pain in right big toe joint. Downward babinski which will probably turn into an upward.
4. It moved up my legs with spasticity, walking problems, balance problems, etc.
5. Bulbar issues: post-nasal Drip, betting I have a brisk jaw reflex.
6. Moved to brisk reflexes in all my body.
Positive clonus in right leg.

So obviously something serious is going on with me neurologically and I feel like nobody will look at ALS truly with all effort until either I fall over and down stairs or lose function in something completely!

QUESTION - Does ALS weakness come on slowly as you monitor (weaker and weaker by the week) it or does it just one day flat stop working?

Sorry I know I'm going to get flack about this post and I know I should be directing this all towards my doctors but I'm scared and I have nobody in my life that cares about me. My heart is with everyone who has this disease and anyone helping a loved one with it.
 

Nikki J

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Well Mayo , U of Minnesota,Hennepin all have ALS specialists. Check your ALSA site to see where else

as we have explained on this subforum before. One muscle suddenly fails yes but PALS have progressive weakness because more and more muscles fail resulting in more things becoming impossible
 

mhewitt2222

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So you should notice weakness coming on slowly. It's just the people who do not pay attention and finally notice when it fails and seek help. So progressive muscle weakness.
 

mhewitt2222

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Based on what I've told you I'm guessing you would seek an ALS specialist now? I've had two bilateral upper arm EMGs & two lower left leg EMGs with normal results. I still don't understand why they do not EMG feet muscles or more hand muscles (thats where my symptoms are). It can usually start there. Are they ust guessing it would show up in regions above and those are easier to test?
 
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