Status
Not open for further replies.

MANinCT

Member
Joined
Apr 11, 2017
Messages
18
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CT
City
Hartford
Good afternoon, I have a specific question which I'm hoping you can help me with. I've read many posts, etc. and sometimes they are "in line" and then sometimes you get a variation from what the mods and senior members post here so hopefully this will help me.

First, I do understand that many people come to this site with health anxiety, etc. and that no matter what you tell them "no ALS", etc. that they will be back. I also hope and think that my post will help some others out there.

That being said here's my story. Back in December of 2016 I started to have a weak and odd feeling in my right arm/hand like things are heavier, etc. Something in my mind said that this wasn't right as I had just heard about an associate of mine had been diagnosed with ALS so it was heavy in my mind. In fact, I feel like I dropped something I was holding that day which fueled all of the flames, etc. So I really struggled with this for months and finally saw my GP who did a neuro test (push/pull, strength, etc.) and said all was well. I even saw a PT and did some strength testing which was OK (but I didn't believe either of them).

Finally I had my GP make an appointment at a neuro for an EMG with needles and motor nerve study which came back normal (right leg and right arm). This was done almost a year ago (May 2017) to the day. I felt relieved when I left but I still had this "feeling in arm" that I couldn't shake and still do today which is why I came here for some pointed questions.

1) I understand that the EMG is the "gold standard" for ALS and that it will catch things way earlier than you can feel in your body. The question I have which may sound odd is if you had a clean EMG is there a time frame when that clean EMG "expires" and you should get another one? What I mean is that obviously I wouldn't look for another EMG a month or two after my clean EMG but do you look out a year, 2, 3 years where the EMG may have been do too early? The neuro that did my EMG said she spent a lot of time in an ALS clinic (she went to Harvard so I'm sure it was the Boston area) and she has done 10,000 or so, so I'm not worried about the results being inaccurate, just the time frame. She also said that most neuro's don't need to do an EMG when they see a patient for a few minutes as they can tell if somethings wrong. In fact, that's what mine said but she did one to alleviate my obvious anxiety.

2) I've also read (many times) that this is a disease of failing and not feeling so having a sore arm or an odd feeling in your arm is not ALS. Just something all of a sudden not working the way it has in the past is one symptom.

If I may take some liberty on all the posts I've read and maybe offer some light as to why people question and re question this. I think what happens is that people have this feeling and, like I have done, you start to focus on your finger or arm in every movement you make. For example, you try to pick up plates or glasses that you typically wouldn't do and when the tiniest of weakness occurs, it flares your anxiety and you think it must be ALS. Trust me, it can lead you into a huge hole to the point where you can't communicate with your kids, wife or work and you start to do strength tests all day. The problem is that no matter how many times you pass this test, it will never be enough to convince you that you're OK because the next time you grab your phone or go to hit a button and you miss it, you will flash back to that feeling and you're back down in the gully.

3) So over the last year I've "learned" a lot about this disease. Not only from my associate who has ALS but mostly from this site and I just turned 50 and feel like I'm in the prime of my life other than this feeling that keeps dragging me back here. After examining many posts I see that 9 times out of 10, I see there are 3 or 4 replies which means the following answers (some more terse and some with a gentle touch.)

"no nada nothing talks about ALS"
"go away you don't belong here"
"everything you say points away from ALS"
etc.....

The keys is when you see these answers, take them at that. I have made the mistake of searching other posts and see one remote reference that is out of context that leads me back down the rabbit hole and wondering if this could be me, etc.

So this post is both asking some questions to help me out and giving you a pretty educated persons view on this site. It's meant for people who can take advice from people who are knowledgeable about ALS from living with it and move on.

I wont lie, I have some anxieties or else I probably wouldn't be here. That being said, I'm still not exactly sure what is wrong with my arm as I do feel uncoordinated and weak (perceived) but as many people here are probably trying to do, put ALS out of my mind and move on. When I say that I mean the following.

Trying to go about your life and live. I'll give you an example. I had my birthday party this weekend and must admit that I had a few drinks (just turned 50). It was remarkably odd that while I was out having a good time and not ruminating (alcohol helped) I didn't have any feelings in my arm or fingers so what did that tell me? As with most people that are lurking on this site, a lot of this is in your mind like I hope it is for me.

Also, as we know ALS is rare but I think people who lurk here think it's more common because of all the traffic. You tend to see the same 6 or 7 people answer 300+ people who are looking on the site for the exact square peg into a square hole. The problem is that even if you spend days and weeks on this site you will probably never see your exact "symptoms" and the exact answer you want from a moderator or senior member so what happens it that you think "but what about this ache, twinge or twitch"?

To end, I'm hoping you can give me your opinions on the above question re: EMG's and maybe share this with people who are suffering by spending time on this site when they should be running, working, caring for your kids or just living.

Thanks
 

MANinCT

Member
Joined
Apr 11, 2017
Messages
18
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CT
City
Hartford
Most sincere apologies for the lengthy post(s). I was really too verbose and should have abbreviated things on this.

My apologies.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,075
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Thanks for sharing. I am sure some will find it helpful.

Re the "too soon clean" EMG question in MND, the short answer is that if there is no significant loss of abilities in the interim, there is no indication for another EMG, any more than there would be if there had been no previous EMG. It is not the shelf life per se; it is the whole clinical picture.

That said, many here have seen (and been diagnosed in part because of) EMGs where there were abnormalities in limbs or regions where there were as yet no symptoms. None. That is how early nerve damage is seen.

So when there are no findings in a symptomatic area, it is a very strong cue that the lower motor neurons are fine, and that the symptoms do not involve these nerves, which creates a higher bar for the idea of repeating an EMG.

Best,
Laurie
 

MANinCT

Member
Joined
Apr 11, 2017
Messages
18
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CT
City
Hartford
Thanks for the feedback, I guess I thought I was pretty educated but I guess I need more layman’s speak!

So you would say no further EMG is needed?
.
 

MANinCT

Member
Joined
Apr 11, 2017
Messages
18
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CT
City
Hartford
I also should mention that I had a yearly physical in March that was fine and he did a neuromtest for strength etc. this was with my GP
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,075
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
From what you have reported, I don't see that you've lost significant abilities, so yes, that is what I would say (that there is no point in repeating the EMG from a year ago).

You may still have a feeling in your L arm, but you still have function, which is way, way, more important. And this has been confirmed by a GP. This is very good news.

You are right -- this is the rub -- once people see "ALS" on the screen, it is difficult not to focus on every ache, twitch, niggle and fit it into that picture. It is like jumping into a cold pool, to have it done. But in the case of the cold pool, something is gained -- you get into the pool and have a good time. In the case of the "isn't this a symptom of ALS" syndrome, it wastes your life and shortchanges the lives of people who care about you.

The clearest way to show the difference between people who go to a doc and end up actually having ALS is that there is no way they can ignore their symptoms ultimately, no way just to look the other way, they simply can't go on as they have been physically. If those words don't apply to you and you've had a normal exam/normal EMG, don't chase the bouncer for this club, find a club that does you good.
 

ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
123
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
City
Minneapolis
This is my first post here. My father was recently diagnosed with ALS after having symptoms for almost two years. He needs help with almost anything that requires him to use his hands. For example, he can't button a button.

You just turned 50 and you have a family. You only have This Present Moment to live. You can't live yesterday over. You can't live tomorrow now. You only have right now with the people that you love, that need you to love them, to focus on their needs, to raise them up to be independent adults.. Don't allow fear and anxiety to rob you and your family of the limited time that you have together.

Get treated for the anxiety! ANXIETY is the disease robbing you of your peace of mind. To have medical professionals perform the definitive tests which determine you do not have ALS then choose to not believe them is not rational. That is fear and anxiety in control of your life. Get treated for anxiety then see if you're still worried about ALS. Does that make sense?

As I read these "do I have ALS posts" I notice that many of them talk about a weird feeling in an arm. Most of us use electronics everyday, not necessarily in the most ergonomic way. I know I've had to adjust the way I use my "mouse" arm because I get tingling / nerve issues - from using a computer all day - not ALS. I carry a purse that's too heavy. There are a ton of muscular / skeletal ways that we misuse our bodies that can cause "weird" feelings. These issues are not ALS.

Another way to think about this. You have not lost any function. Hallelujah! Run out and have the best day that you can. Enjoy your life! That would be my advice even if you did have ALS - which you don't. Make today the best day that it can be. Be thankful that you have work, friends, family, that you can be productive, wipe your own butt, drive a car.

If the time comes that you can't button a button, stand up from the toilet without supreme effort, cut your own food, or say the words that you want to come out of your mouth - Worry about it then and go back to the doctor.

I say all of this with the deepest concern for your wellbeing and a sympathetic heart. I know that the soundtrack of fear and anxiety can be debilitating. I know that it is real to you. I am trying to expose the lie so that you can have the happy healthy life that you want.
 

MANinCT

Member
Joined
Apr 11, 2017
Messages
18
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CT
City
Hartford
Thank you both for the comments and info, etc., means a lot to me. Going to take your advice and try to CBT to see if that helps with things.

Have a nice day!
 

ThisPresentMoment

Distinguished member
Joined
May 30, 2018
Messages
123
Reason
Lost a loved one
Diagnosis
12/2017
Country
US
State
MN
City
Minneapolis
Thank you for the update. I am cheering you on and wishing you and your family many long healthy and happy years.
 

Clearwater AL

Very helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,265
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Get Real
I'd like to add here... there is a growing connection between stress and anxiety. It took this long? :)

Studies are finding if someone addresses stress (counseling, self help books which there are some very effective ones or through a GP) the health anxiety responds as well.

Many people are reluctant to admit they have health anxiety, many are in denial. But, often in Threads posted we read about having children, about to have one, just had one, they write about their very active life style, responsibilities and jobs. Stress.

I've read a lot of Threads and I think back now the cause in the closet for the symptoms they write about may be more stress related feeding the anxiety thing.

How many people are reluctant to admit to health anxiety or in denial of it but would readily admit they are under a lot of stress.

Thankfully we have some doctors who are members and will chime in on this.

Or... move this to another sub-forum.
 

MANinCT

Member
Joined
Apr 11, 2017
Messages
18
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CT
City
Hartford
Excellent point(s). Speaking for myself and I'm sure others re: health anxiety and stress. You're right, it's tough for a seemingly healthy adult admit to something that every other person around him doesn't have when you seem like you're on top of the world.

My GP says that we spend so much time focusing on our body (skin and bones) when everything you need is the 8 inches between your ears...our mental health.

I do know this for a fact. As I've read here, you can see the best neuro in the US who's board certified in the ailment you have and she/he can tell you that you don't have ALS, etc. but if you don't fully believe that (like myself) perceived symptoms will crawl back over time. It may not be a month or two but slowly, you will start to "notice" things that you never noticed before because your mind lets you.

To end, I looked back at some Emails I typed a few months ago before this latest health anxiety and I was a different person. Concise, precise and on my game. I then looked back over the last month of the Emails I wrote and you would have thought my 10 year old son wrote them.

I hope this helps someone who is coming here a lot and looking for something or hoping to find a "symptom" as it can drag you down a path of destruction.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,817
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I would say continuing to engage on a forum that focuses on a specific disease that you do not have, but are worried about, can only add to health anxiety.

This comment is not meant disrespectfully. It is a reminder of the insidious nature of how anxiety can cause us to feed it. There is a need to make sure continued engagement here is not doing you further harm despite your stated goal of seeking help with the proper professional. CBT is important- and one of the first steps would be to stop engaging in activities that continue to focus on and feed the thoughts of having a disease you've been informed you do not have.
 
Status
Not open for further replies.
Top