Worried about als

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Clearwater AL

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Sam, I’ll do this again… you’ve posted 6 messages and received 14 replies.

I’ll write this again… anyone can push their Neuro for a second EMG
and some push for a third (or go elsewhere for a third) because of
their persistent ALS anxiety even though the first cleared them of
ALS. (But many...thanks to Dr. Google they go on.)

An EMG is an expensive test, probably more than other neurological
tests. That test is profit based, they don’t do them at break even much
much less at a loss. The, Neuro, techs, nurses, maybe another consultant
that looks at the test are paid well. (Well, the nurses maybe questionable).

There’s the legal concern too if they don’t. Not all, but the facility that
do the tests… why not ? $$$

It's up to you. And, being 29 years old gets me to write again.... ALS
is a rare disease and the odds (10X) are even rarer against you having
ALS.
 

sam94

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Hi I just wanted to reply, first I don't want to annoy any one and I apologise for this and I don't wish this disease on any one and feel terrible for anyone suffering or helping someone through it.

The reason I've been concerned is a lot of people in thier 20s start with similar symptoms to me on this group and continue to worry because not much else points away from als, they even go on to get drop foot, difficulties heavily in breathing and eating and talking, and complete hand weakness with some loss of motor functions in thier minds and some of them have clean emgs then slighlty abnormal ones depending on how long they wait between emgs.

I'm nearly 2 months since symtoms started and the same initial symtoms are thier and worsening, I believe I have some atrophy in hands and feet but you can't post pictures on here which I respect, in last few days I have been struggling to talk, swallow breathe, a tonsil has swollen on the right side of my mouth with a lymph node on the right side of neck the symptoms I have I've not had before and it is the same time as all these muscle issues.

I also have cramping in the right leg which is started to come persistent since last post with right hand weakness, the reason I asked if I should get an emg on the other side is because the symptoms started after the emg on the symptomatic muscles on the left. The nerve conduction studies was done on both sides to compare which was apparently fine about a week ago so in everyone's mind what the symptoms I have won't now change into mnd? a gp on the same weel if the test did her best job at a clinical exam to and said what she did do seemed okay I know she isn't a nuero but she tried.

The only things that still have me worried about mnd is I've not had pain or twitching which would point away. I have a neuro appointment in the waiting in the UK and if you think I should stop pursuing another emg on the other side and around the mouth breathing areas then that's fair enough, I just can't get als out my head,
 
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lgelb

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Whatever you think you've read that has stoked your anxiety isn't real and you should stop reading. There is no big group of people in their 20s as you describe.

The fact that you haven't had pain or twitching means absolutely nothing. ALS is a rare disease and most causes of any problems with muscles and nerves, with or without pain, with or without twitching, are something far more treatable, full stop.

ALS does not come on as you describe. An EMG isn't done on the wrong side. Damage appears even in areas the person thinks are fine. ALS shows up in most or all regions tested no matter which ones they are.

I think you should return to your GP having made a fair trial of really focusing on your sleep, stress, exercise, and nutrition. Then you can discuss next steps. A trial of physio and/or counseling may prove worthwhile.
 

sam94

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So just to put my mind at ease I should stop focusing on als being what is causing these issues even though in my mind the symptoms are similar I'm so sorry to still reply

I'm going to be a dad in June and I just worry how long I might be here for my son or daughter as all I can think it is , is this horrible disease that I wish never existing and would hope In the future there is a cure
 

lgelb

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Yes, yes, yes. If you can't put it out of your mind, it is past time for counseling. You don't want to compromise your young family -- congrats on the forthcoming addition -- for the sake of unfounded fears.

We all hope for a cure one day. Meanwhile, treatments are improving.

If you participate in a Walk or other MND fundraising where you are, or help out an affected family with a project, I believe you will see the difference between those who are truly affected and yourself.
 

Clearwater AL

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Sam. "I'm going to be a dad in June and I just worry how long I might be here for my son or daughter."

We see this same worry so many times... moms and dads about to become parents. One doctor at
this time you need no further advice from is Dr. Google. Reading old threads here and comparing yourself
to others. If you read old threads completely you'd see, for most of them, they did not have ALS.
The few are very very few. Even then their diagnosis was questionable and they did not stay here.

Again we have seen this so many times before and then after the baby was born. I don't recall the
terminology for it but it is real. I hope you find the path out of this and become a happy dad.
 

affected

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Sam, you are feeding off the attention here now. We have said from the start that what you are experiencing is not anything like ALS. Yet you keep asking us to tell you again.
Please print this and take to your doctor and agree to follow their directions for help with the next steps in your health treatment.
You can get back to full health, truly.
 

sam94

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Hi I don't want to continue going down this dark path I have seen the gp again recently I've been referred for cbt therapy to help my mind , she did some checks of strength around my wrists and checked my tongue and leg power which she said for now is still okay, as of today I have excess saliva In the mouth can still talk without slurring for now and eat and drink other then really hard foods , my wrists are weakening on both sides its at the point where I struggle to hold my phone up for a while and things like holding a fork while eating feels harder my two thumbs feel like they are weakening more every day, my walking feels off and when I drive my right foot feels Like it's on fire but I can still control my work van for now both my toes have similar feeling to the thumbs with weakness and movement. I had asked if the neuro appointment to be expedited to the hospital as the wait list for me will be at least another 14-16 weeks. My question is with the symptoms I have should I be looking to expedite further and still chase gp or should I just leave it , I just feel like I'm going to get worse that's what worries me and the motor neurone is still On my mind , I'll try to make this my last messege as I didn't know where else to turn , thanks and sorry again everyone who has to deal with this for real , sam
 

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It's entirely up to you whether you decide to chase something that doesn't sound like ALS to the people here or to your doctors. This forum can't really provide you the type of reassurance you're looking for. It might be time to look at counseling, as recommended a couple times. Posting here is not providing you anything in the way of constructive assistance and is likely proving to continue frustration because you are looking for help in the wrong place.

I will be closing this thread. Please do not open another.
 
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