Old 03-19-2019, 07:15 AM #1
sunshineandroses179's Avatar
sunshineandroses179 sunshineandroses179 is offline
Banned
 
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
sunshineandroses179 sunshineandroses179 is offline
Banned
sunshineandroses179's Avatar
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
Default Advice appreciated

Good morning and thank you for accepting me to post on this board. I did not ever think I would be making a post like this.

I have read through the stickies and the previous posts regarding twitching and symptoms. I still had a few questions, if you don't mind.

I have been to my PCP and had my reflexes on my legs checked and she checked the strength of my legs (nothing else). She said it all looked fine and figured my twitching was a result of vitamin deficiency or low iron or autoimmune things. However, my blood work all came back fine, so that's definitely not the case. I am to follow up with her, but I'm not sure when I'll get that appointment. My twitching has been going on for a few weeks now and I also think that my left leg/ankle area has been acting differently. When I walk or move in a certain way, it feels as if I'm rolling my ankle and having to put pressure on the outside of my foot in order to catch my balance. That is one of my biggest worries, coupled with the twitching. It's not just twitching, but the thought that my left leg/ankle is getting weaker.

Questions...
1. After reading the stickies and the previous posts, I realize that twitching in and of itself isn't a red flag. My question has to do with localized twitching and what that means. I have read that several people who were diagnosed ended up having localized twitching as the nerves were dying, then the twitching stopped after the nerve had died and moved to a new spot. If I'm having twitching in both calves, thighs, and abdomen areas, but in the same spot each time, is that considered localized and should I be more concerned about that type of twitching?

2. Is the Neuro exam from my PCP enough to tell me if my reflexes and strength tests are ok? If I already had twitching from dying nerves, would that show up in my reflexes? She mentioned doing some more imaging tests and then a referral to a neuro. However, if she thinks I'm strong and my reflexes are good, I'm ok with not going to the neuro if it's not really needed.

3. Could the fact that my ankle feels like it may give out on me and is causing me to walk differently be an indication that I have lost muscle there? Could it be that it's such a small muscle that I've lost, that I don't really notice it as much as if it were causing me to not be able to move my foot at all? I can still stand on my tip toes, walk on my heels, balance on one foot (even though it's more wobbly on the left side), and can still jump on both feet.

Thank you for taking the time to read this and give me your valued opinions. It means a lot to me.

Thanks!
sunshineandroses179 is offline  
Old 03-19-2019, 07:42 AM #2
Nikki J's Avatar
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 7,059
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 7,059
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Advice appreciated

1 that is not localized twitching but localized or not twitching doesn’t matter if nothing else is happening.

2 your pcp should be competent to do reflexes and strength testing

3 I had onset in an ankle muscle. I didn’t feel anything different. My first symptom ( feeling fine) was when I stepped sideways and fell. It is true that ankle onset would still allow all the things you can do. However your description is significantly different than my experience. If you do have weakness in your ankle there are many more likely causes.

A clinical exam should confirm or exclude weakness there once you show where you experience symptoms.
Nikki J is offline  
Old 03-19-2019, 09:28 AM #3
sunshineandroses179's Avatar
sunshineandroses179 sunshineandroses179 is offline
Banned
 
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
sunshineandroses179 sunshineandroses179 is offline
Banned
sunshineandroses179's Avatar
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
Default

Thank you! That answers my questions in a way I can understand!

Question about your ankle (if you don't mind).... When you say that it was very different than your experience, would I still be able to stand on my heels, tiptoes, etc? Would the doctor be able to tell if I have weakness there? Thanks again.

Last edited by ShiftKicker : 03-19-2019 at 12:06 PM
sunshineandroses179 is offline  
Old 03-19-2019, 04:50 PM #4
Vincent's Avatar
Vincent Vincent is offline
Senior Member
 
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 878
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Vincent Vincent is offline
Senior Member
Vincent's Avatar
Join Date: 2013
City: Barrie
State: ON
Country: CA
Diagnosed: 08/2014
Interest: I have been diagnosed with ALS.
Posts: 878
Vincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to beholdVincent is a splendid one to behold
Default Re: Advice appreciated

As someone who was diagnosed after presenting with drop foot, I'll add my 2 cents. My wife noticed it at first, we were out for a walk on vacation and my left foot kept slapping with each step. I had just bought new shoes before the trip so I figured that was the problem. I really got concerned a few months later when I had to run across the road one day. My right foot was fine, but the left foot just wasn't there. There was no strange sensation, mt left foot just wouldn't get in position to hit the ground like it should. I called my PCP who referred me to a Physiatrist who I had worked with for 20 years. She performed an emg right away, and looked worried. It was 2 1/2 years before I was diagnosed with ALS. I at no point ever had a normal emg, and I have spent sufficient time in mri machines to have my own coffee cup in the waiting room. So to answer your question, ALS begins with something not working with no abnormal sensations.
Vincent
Vincent is offline  
The Following 2 Users Say Thank You to Vincent For This Useful Post:
affected (03-19-2019), dldugan (03-20-2019)
Old 03-19-2019, 07:45 PM #5
sunshineandroses179's Avatar
sunshineandroses179 sunshineandroses179 is offline
Banned
 
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
sunshineandroses179 sunshineandroses179 is offline
Banned
sunshineandroses179's Avatar
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
Default Re: Advice appreciated

Thank you, Vincent. I guess I'm not really familiar with what "drop foot" is, but I'll look it up. Is there anything in my symptoms that might point to ALS, or anything that sounds abnormal? I am going to see if my chiropractor can do a quick neuro exam on me tomorrow just to check reflexes and strength, as it's another week before I can do a follow up with my PCP and she said it will probably be about 6 weeks before I can get into a neuro. Thanks for taking the time to respond. I really value your opinion.
sunshineandroses179 is offline  
Old 03-20-2019, 09:00 PM #6
sunshineandroses179's Avatar
sunshineandroses179 sunshineandroses179 is offline
Banned
 
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
sunshineandroses179 sunshineandroses179 is offline
Banned
sunshineandroses179's Avatar
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
Default Re: Advice appreciated

Hello, again! I visited with my chiropractor today since it's going to be a week before my PCP can do a neuro exam on me. He checked my reflexes and said they were just fine. I'm hoping my foot/ankle issue might have been because my hips were out of alignment and the left side was drastically different than the right.
I was wondering if you might have any advice on what my next steps might need to look like and if you are seeing anything that might resemble ALS in my case.

1. Would my reflexes show any abnormalities if this was an early case of ALS? I didn't do much in the sense of strength testing today (mainly just pushing with my feet and legs and was told both sides were the normal and the same).

2. If the PCP next week also says that my neuro exam is okay, should I still proceed with a neuro follow up or wait and see if any other symptoms might show up? She was wanting to start me on a medication for nerve issues, but I do not want to start a med until I know WHAT is causing the twitching.

3. The twitching has decreased today and I'm hoping that might be a good sign but then I wonder if it could be that nerves have died and that's why the twitching in this areas have stopped. Does that sound likely given my situation?

I appreciate any and all advice regarding my situation and I really appreciate you taking your time to give your opinion and advice. Thank you so much.
sunshineandroses179 is offline  
Old 03-20-2019, 09:06 PM #7
KarenNWendyn's Avatar
♥ KarenNWendyn KarenNWendyn is offline
Moderator

Forum Moderator
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,602
KarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond repute
♥ KarenNWendyn KarenNWendyn is offline
Moderator

Forum Moderator

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 1,602
KarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond reputeKarenNWendyn has a reputation beyond repute
Default Re: Advice appreciated

If your PCP does a neuro exam and says there is no weakness, then you’re good.

Reflexes are generally hyper with ALS but can be normal in the beginning. So reflexes alone (in the absence of weakness and muscle function failure) are really not diagnostic of ALS.

Ignore the twitching. No, twitching does not stop when nerves die. Your nerves are not dying.
KarenNWendyn is offline  
Old 03-20-2019, 10:55 PM #8
sunshineandroses179's Avatar
sunshineandroses179 sunshineandroses179 is offline
Banned
 
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
sunshineandroses179 sunshineandroses179 is offline
Banned
sunshineandroses179's Avatar
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
Default Re: Advice appreciated

Thank you for your opinion and quick response. It's appreciated!
sunshineandroses179 is offline  
Old 03-21-2019, 06:24 AM #9
sunshineandroses179's Avatar
sunshineandroses179 sunshineandroses179 is offline
Banned
 
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
sunshineandroses179 sunshineandroses179 is offline
Banned
sunshineandroses179's Avatar
Join Date: 2019
City: Manhattan
State: KS
Country: US
Interest: I am interested in learning about ALS/MND.
Posts: 6
sunshineandroses179 is on a distinguished road
Default Re: Advice appreciated

Hi! I had another question I would love to have advice/opinion on if anyone has the time to answer....
I had decreased twitching all day yesterday. Then, I decided to read through the notes from my visit with my chiropractor yesterday. I had told him why I was concerned and about all my symptoms. I asked him to check my reflexes and my strength. When I asked him how my reflexes were, I thought he meant they were normal because he didn't make it sound like there were any concerns. He said "Oh, they are nice and brisk." like it was a good thing. But after reading through my notes and looking up brisk reflexes, I now know that is not a good thing and it can point to ALS. I still do not have any documented weakness or loss of ability to do anything. Just the twitching and now the brisk reflexes (even though the NP who did my blood work and checked my reflexes last time had said my reflexes were fine). I am really confused about this and I'm wondering what my next steps should be. How concerned should I be that I have these brisk reflexes, along with the twitching. My ankle issue has been about 95% better than it was two days ago, so I was feeling pretty good about the direction things were headed. Now, I'm not feeling as great and I'm feeling like it's pointing more and more to ALS. I know this isn't a place for me to ask for anxiety help or to ask for a diagnoses. I am just looking for anyone who is willing to give me an opinion on what this means and may sound like. Thank you for considering!
sunshineandroses179 is offline  
Old 03-21-2019, 06:51 AM #10
Nikki J's Avatar
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator
 
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 7,059
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Nikki J Nikki J is offline
Extremely Helpful Member
Forum Moderator

Nikki J's Avatar
Join Date: 2012
City: Boston
State: MA
Country: US
Diagnosed: 04/2014
Interest: I have been diagnosed with ALS.
Posts: 7,059
Nikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond reputeNikki J has a reputation beyond repute
Default Re: Advice appreciated

Brisk reflexes are nothing to worry about. Brisk is common especially if you are anxious. If you had one place that was consistently very hyper not just brisk it might warrant further investigation though it could have many causes. When I say hyper it isn’t just brisk. If your reflexes are generally brisk no it does not point to ALS.
Please no more questions until you have seen your pcp
Nikki J is offline  
Thanks from
sunshineandroses179 (03-21-2019)
Closed Thread

Tags
abdomen, advice, ankle, autoimmune, back, balance, diagnosed, dying, foot, ice, iron, muscle, pressure, questions, reading, symptoms, tests, twitching, work, worries


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Advice appreciated. taxmeless Do I Have ALS? Is This ALS? 50 02-05-2018 07:55 PM
Any advice would be appreciated Vangie Do I Have ALS? Is This ALS? 16 01-28-2018 08:16 PM
Advice appreciated nmu943 Do I Have ALS? Is This ALS? 4 02-01-2016 09:28 AM
Help and advice really appreciated Dutch Do I Have ALS? Is This ALS? 11 11-30-2014 02:04 AM
Advice appreciated capabilitybrown Do I Have ALS? Is This ALS? 7 04-01-2012 05:38 PM


All times are GMT -5. The time now is 07:40 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016