Old 12-24-2018, 07:52 AM #1
Passive4356's Avatar
Passive4356 Passive4356 is offline
Banned
 
Join Date: 2018
City: Boston
State: MA
Country: US
Interest: Other
Posts: 2
Passive4356 is on a distinguished road
Passive4356 Passive4356 is offline
Banned
Passive4356's Avatar
Join Date: 2018
City: Boston
State: MA
Country: US
Interest: Other
Posts: 2
Passive4356 is on a distinguished road
Default Scared this Holiday Season

First, I want to say that I have been to this community off and on for the past week or so and have seen how incredibe you PALS and CALS really are. Thank you for doing something you certainly don’t have to do. This greatly helps people like me looking for some possible insight into their situation.

In late September of this year I started to feel a little off physically. I had been running a lot trying to lose a few pounds to no avail, but hey I just turned 30 so I chalked it up to the “downhill slide” of getting older. Yeah, no more easy weight loss and you’ll just feel weird and sore from here on out.

Then in October I started to have a strange pain in my right rib area that concerned me enough to to my GP. He said probably anxiety and stress as I did just quit my job with a wife and two children at home to look after. Then in November, it happened. Twitching all over! Thumbs, eyes, legs, calves, etc. Paresthesia (pins and needles, itching, cold, etc) in all of those same places. Mental confusion/fog. Dropping things. Tripping every now and then. Can’t find words, you name it.

I tend to be fairly neutral in these situations but I had to go to see the neuro. I have been to her before for an unrelated issue. She’s very reputable and has a great pedigree from an awesome school and years of experience, so I feel as though she’s pretty solid. I mention my symptoms to her. She taps on my knees while my feet are on the floor, makes me tap my fingers together on both hands, puts the vibrating thing on my hands and says... muscle bulks good, muscle tone is fine, how’s your life going?.... what the heck?!? I said fine, I quit my job but I got a new great one... what about these twitches and cold spells etc... she’s says it anxiety related. I’m referring you to a psychiatrist.

She was concerned enough to give me a NCV test. They did it in both my arms since I was concerned about my right hand. (I have a couple of extra creases in the thumb area) she claims my results were literally from a textbook case of picture perfect. Refuses to do an EMG. Gives me a referral to a psychiatrist.

My question is this... I’m twitching all over for about two months now... have pain and tenderness in my hand. Have dropped a million things it seems like, and I’m losing words a lot, etc. all things I’ve read could point to ALS. So should I go back and insist on an EMG.. I feel like she’s going to be furious if I do that. But, I’ve read way too many atories that say twitching first.. dropping stuff first, etc. my neuro swares she spent a whole year in ALS only during her school years, but I still feel like she’s not looking hard enough.

I’ve been testing myself like crazy... walking for 2 minutes on my toes on a treadmill, one minute on my heels. Doing heavy squats and bench press... carrying around weights between my thumb and forefinger to see which hand gives out first... I have a complete inability to enjoy these holidays with my 3 and 1 yr old because I’m researching this and picking up books with just two fingers and on and on and on....

I’ve read the big sticky, but I really feel a weakness in my hand and the twitching is so ridiculously everywhere... Any advice or possible comments would be greatly, warmly appreciated.
Passive4356 is offline  
Old 12-24-2018, 02:28 PM #2
ShiftKicker's Avatar
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator
 
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,999
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
♥ ShiftKicker ShiftKicker is offline
Moderator
Forum Moderator

ShiftKicker's Avatar
Join Date: 2015
City: Vancouver
State: BC
Country: CA
Diagnosed: 06/2015
Interest: I have been diagnosed with UMND/PLS.
Posts: 1,999
ShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond reputeShiftKicker has a reputation beyond repute
Default Re: Scared this Holiday Season

If you have read the pinned post, you should have been reassured that pain, tenderness, sensory issues and twitching is not considered indicative of anything unless also accompanied by a constellation of other neurological issues. ALS is not indicated "losing" words. That's something else. It is a motor control issues and is a disconnect between the brain and limbs and has very specific indications that you have not listed.

Self testing is never recommended and is a giant sign of health anxiety. You really can't test yourself for neurological issues, as you don't have the years of medical training required to detect what doctors are looking for, and you can't elicit or observe the proper reflexive involuntary responses required to indicate neurological issues.

Please follow the recommended course your very qualified neurologist has recommended. If, after you see a psychiatrist and they say there's something more to be concerned about, then pursue further testing with an appropriate medical practitioner. Psychiatrists are also medical practitioners and are very good at separating causes of symptoms between a structural or neurological source and that of brain chemistry. Your mind is your hard drive and controls your entire body- sometimes it's a software issue, which can still profoundly affect your day to day activities and be a huge source of difficulty.
ShiftKicker is offline  
Old 12-28-2018, 07:28 AM #3
Passive4356's Avatar
Passive4356 Passive4356 is offline
Banned
 
Join Date: 2018
City: Boston
State: MA
Country: US
Interest: Other
Posts: 2
Passive4356 is on a distinguished road
Passive4356 Passive4356 is offline
Banned
Passive4356's Avatar
Join Date: 2018
City: Boston
State: MA
Country: US
Interest: Other
Posts: 2
Passive4356 is on a distinguished road
Default Re: Scared this Holiday Season

Thank you for your response and your message. I do not see an option where I can reply to your message, just Wanted to say thank you. Also, just to clarify, there’s nothing that points to ALS or a reason to insist/demand and emg?
Passive4356 is offline  
Old 12-28-2018, 04:23 PM #4
lgelb's Avatar
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator
 
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,082
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
♥ lgelb lgelb is offline
Extremely Helpful Member

Forum Moderator

lgelb's Avatar
Join Date: 2009
City: Seattle
State: WA
Country: US
Diagnosed: 09/2009
Interest: I lost a loved one to ALS/MND.
Posts: 7,082
lgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond reputelgelb has a reputation beyond repute
Default Re: Scared this Holiday Season

No, nothing that points to ALS or an EMG. Though I have to say, if you think your neuro is not looking hard enough and are fearful of her reaction if you pursue an EMG, you need to get on the same page through frankness (use "I" statements) or find another. Venting here is not going to advance the plot.

Stop self-testing, do some stretching, consider seeing a hand therapist for an eval, maybe reflect on the stress that your new home/job situation may be engendering even though it all seems good, fix what's bothering you in both the mental and physical realms (e.g. check your ergonomics while working, your bed, etc.) and I foresee that you can indeed feel better.

The psychiatrist is always an option, as nothing works until you accept that you have problems that can't be ascribed to a fatal disease. If you can accept this on your own, great. If not, help is at hand (pun intended).

Best,
Laurie
lgelb is offline  
Closed Thread

Tags
ability, advice, anxiety, back, book, cals, children, cold, emg, eyes, fingers, holiday, life, muscle, pain, paresthesia, running, scared, stress, symptoms, test, testing, twitches, twitching, weakness, weight loss


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
Tis' the Season... Clearwater AL Other 1 12-18-2014 03:54 AM
Another Holiday Alone Georgia Peach Past Caregivers (CALS) 10 07-05-2012 06:44 AM
Scared of cold/flu season CoachMeg Rants & Raves 13 10-30-2011 08:52 PM
Flu Season Mike27 General Discussion About ALS/MND 4 11-27-2006 07:36 PM
A BAD holiday! A Daughters Love General Discussion About ALS/MND 1 11-03-2005 04:43 PM


All times are GMT -5. The time now is 06:56 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