Status
Not open for further replies.

Piedoctor

Member
Joined
Apr 15, 2015
Messages
11
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
TX
City
Dallas
Good evening all -

I have passively monitored this forum for a number of months now, learned a lot, and generally tried not to make too many assumptions. I have also done a lot of research about this disease - mostly driven by the symptoms that I have had for the last few months, but also out of interest in the disease and how little is known about it. I am certainly not here to waste anyone's time, and I greatly appreciate the time each or any of you take to read this. I am not looking for answers here either, mostly just to put out some feelings, fears, and frustrations that I believe might be best understood in a forum like this one.

I am not sure whether my symptoms started last February with some tightness in my chest and breathing difficulty (which was diagnosed as asthma - though it seemed peculiar as I have been an athlete all my life and asthma onset at 36 seemed odd). Regardless, that did not manifest itself into anything more serious, but also didn't resolve. I have still been able to run, swim, ride my bike just like I always have, though my top end seems to be limited a little bit more.

If this was not the first symptom, I would say the first thing I noticed was some stiffness in my dominant hand in December of 2014. Since then, the dominant hand has continued to show symptoms, with the first noticeable wasting (though apparently only to me) of the adductor policis muscle appearing in February. There has been no corresponding loss of strength, but my handwriting has gotten worse. I am still able to lift weights and do all the normal day to day things. I recently got a nerve conduction study and EMG done on that arm which were both clear. Ironically, in the week since I got those studies done, I have noticed the same atrophy on my left hand. Now both thumbs feel stiff, but again, there has been no loss of strength.

Also in December I started noticing fasciculations pretty much everywhere. They were in my legs, arms, trunk, even across my head. I could feel them and see them, and they were fairly constant, and while they did migrate a good bit, they were also most prevalent in a couple of areas - my left calf and my right trapezius.

In the past few weeks, I have noticed that I have what seems like difficulty swallowing saliva. And just in the last few days, difficulty swallowing food - it seems like small parts sit at the back of my throat. Interestingly, it seems like only one side of my throat is effected - it seems to correspond with some difficulty that I have with chewing on that side of my mouth.

All these things have been real treats (now to the frustrations and fears part). I have been checked out by my PC and the neuro who ordered the EMG (due to my concerns, not hers), as well as having the NCS/EMG done by another neuro. None of them has expressed any concerns about my physical exam, and as I said, the tests have all been clear. It is so strange to feel this way - and by strange I mean terrifying - and have those feelings appear to not be validated in any way.

Anyway, like I said, I just needed to vent a little. While my own research seems to indicate that there is at least some cause for concern on my part, my own family is getting a little tired of hearing about it since there is nothing they can see or decipher and the docs are all saying that everything looks good.

I so appreciate this community. As I said, it has been an excellent resource for me and again, I don't wish to waste anyone's time. I am just scared of the symptoms I am feeling - knowing full well what the Stickies say. I appreciate the kind ears (eyes) that I have seen on display here and have all of you that are actually living with this disease and your families in my daily prayers.
 
Clean emgs mean no als.

Atrophy comes with weakness; I've lost 25-50% of my hand strength and my hands are starting to look like Skelators.

Search elsewhere, laddie, you don't belong here. IMHO.
 
It never fails to amaze me when people say - I've been reading here for months ... then go on to describe all the same NON ALS symptoms that they must have been reading us answering for months. I just can't understand why you think your set of the same symptoms, clean EMG and assurance by neurologists will read differently in your own post when you have supposedly read them over and over here.

As Greg says, laddie it's time to move on elsewhere and I wish you all the best in solving your NON ALS health issues.
 
EMG and Diagnosis Question

First off, thank you so much to those who take their time to reply here and provide feedback and advice.

Second, I posted once before about a year ago when I had been experiencing a number of symptoms that I was concerned about.

I have what I hope is a quick question for others who have gone through or are going through the various doctor's visits. About 5 months ago I went to my PCP and discussed my symptoms with her (primarily some slight slurring, palpable thinning of the jaw muscles, and some weakness in the jaw area). I had also noticed a number of other symptoms - some loss of dexterity, atrophy, and stiffness in my hands and fasciculations in the legs, shoulders, abdomen, and hands that had been progressing for about one year. During that visit I did not ask about ALS, but she referred me to the ALS specialist at the clinic at KU to get examined for bulbar ALS.

The visit at KU was great - I was seen by the head of the clinic and the NCV/EMG were done by the head of the department. However, the EMG was done on my right arm and right leg, nothing bulbar related (though the clinical was very thorough). Is that a common occurrence in other people's experience? And can someone explain why that might have been the course of action?

I ask because while they seemed unconcerned at the time, there are now (four months later) additional symptoms - primarily weakness in my right arm. From what I gather here, an EMG would have picked up any ALS-related nerve damage, even if it was several months ago, is that correct?

Again, I thank everyone for their time.
 
I reopened your old thread and merged these two, for convenience and keeping the history together.

You're right to say that the EMG would pick up ALS before the symptoms become apparent to you or your doctor.

Glad to hear your visit at KU left a positive impression. But I know you're worried now.

You mentioned weakness, but said the docs were not concerned. Is this weakness something that a doctor can find on exam, or is it something that only you can feel?
 
Mike -

Thanks for the reply - and for merging the thread. I was not sure if a year between posts meant needing a new thread or not.

The weakness is new - post EMG (which was done in late November). The weakness in the right arm and continued loss of dexterity - noted mainly when writing - I noticed earlier this month. There was no weakness observed in the November visit, nor as I said, was anything noted on the EMG/Nerve conduction study done at the same time. And again, given who I saw, I have no doubt that they were accurate at that time. I guess my main question is, with the passage of four months, would symptoms that may have previously been sub-clinical now be apparent or is a full work-up four months ago sufficient based on other's experiences.

I am interested in why a limb EMG was done when my file at KU indicated I was there for bulbar evaluation, but I assume this is fairly standard, possibly based on the clinical exam?
 
"with the passage of four months, would symptoms that may have previously been sub-clinical now be apparent or is a full work-up four months ago sufficient based on other's experiences. "

I don't have a definitive answer on time limits, and I'm not sure anybody does.

"I am interested in why a limb EMG was done when my file at KU indicated I was there for bulbar evaluation,"

You'd have to ask the neuro.

Two questions: First, is this weakness very noticeable? Does your hand or arm dangle uselessly? Is there a muscle that just doesn't work?

Second, maybe I missed it, but exactly what is it that makes you thing you have ALS, specifically?
 
In answer to your question, yes, a limb EMG 4 mos ago would be expected to see nerve damage the symptoms of which are just now emerging. So if your EMG was clean, that's very good news in this context.

I could hazard a guess as to why only 2 limbs were tested instead of the bulbar region but I think the examiner should answer that. You have the right to ask. But Mike is right, too, that at this point, if you can still perform with your muscles notwithstanding the differences you feel, that others do not perceive, likely this is not the right place for you.

Best,
Laurie
 
Mike and Laurie -

Thank you both again for the responses, and for helping me think through this.

Mike - to address your question about why I thought this may be ALS - like many here I have had some troubling symptoms, particularly the ones I mentioned in my jaw and mouth. That said, when I went to my PCP, I specifically did not mention ALS to see what she would say based on my symptoms. It was her recommendation to refer me to KU, and specifically to the ALS center there. It was only once I got there that I saw that she had referred me for a bulbar eval.

I will not take up any more of your time, you have been more than helpful and I appreciate your compassion. I have seen a number of the responses that you have posted for others as well. I also don't want to take up any more of the neuro's time - that clinic is an excellent resource for those that really need it. Thank you both for helping address my concerns with your knowledge.

Best, also Mike
 
Status
Not open for further replies.
Back
Top