Status
Not open for further replies.

stargrave

Member
Joined
Feb 14, 2010
Messages
10
Reason
Learn about ALS
Country
Mex
State
DF
City
Mexico City
Hello everybody.

I might be the 10000 "client" of the board, trying to get some answers about ALS/MND.

Let me tell you that I'm quite aware of how much time/trials/test/appointments are needed for an ALS, more so because the obvious precautions the doctors have, before doing it so.

I also know how much symptoms/onset of symptoms ALS shares with many other neurological conditions MS/Fibro/Lyme/etc.

So, here is my case and question(maybe both old stuff for you, so be patient, please).

The Case:

I came for the neurologist because I felt numbness on my left arm and leg, and some clumsiness, after a brief dizzy spell. I didn't gave much attention to the dizzies, cause I've been diagnosed with a right ear vestibular weakness in 2006.

I waited for two days but the symptom didn't recede, no headaches, and no much more. I feared for a TIA. One day after my neurologist appointment I fell numbness in my left side, on my shoulder and back to be precise.

This all evolved to numbness and tingling, with mild weaknes and clumsiness, mostly concentrated on my hands and legs(from knee down to my foot, and from my elbow down to my hand) "socks and gloves" the doctor called it.

So he gave me several tests, strength, coordination, balance, sensor, the whole stuff, I came out pretty normal. So he decided to "spare" me the EMG test, and prescribed me Lyrica, blaming a neuropathy, possibly from chemical exposure, for my symptoms.

So when I checked out the term on the net both ALS and Guillaume Barre, and many other similar conditions, came across, so I felt ill.

I panicked up to the point that I ended on an ER room with a "false heart attack", they tested me both taking blood tests and with an Electrocardiogram.

I came home with a friend of mine which is an internist, and he suggested me to take clonazepam first to take control of the panic attacks, and because of the side effects of Lyrica, that "could drive you nuts before it can give you any symptom relief".

Because I didn't have any real pain back then, but some tingling and numbness, and knowing that Lyrica won't "cure", but just ease up, my symptoms, specially pain, which was absent at that moment, I took the cloazepam way, because before that I couldn't even get 3 hours of sleep, and I was really close to loose it.

Fast forward, pain came, some weakness, and so I came decided, bring me the EMG...

It was a torture to me because I hate needles, but here is what the neurophysiologist said:
"SEQUELS(this was really strange to me) of a self-limited pure motor polyneuropathy of unknown etiology(I hate when they say unknown)".

He said this(on the report) because he found "some mild denervation, but also traces of mild reinervation, and no sign of active denervation on any of the sites explored".

I even remember that he asked me if I've experienced symptoms before, and I answered, It all started mid January this year... He believes this was older..

The Neurologist, confirmed, sort of, his first impressions, and he told me it was a recovery road from here...

Not so true in my case as I began to feel a lot of "new" or "improved" symptoms, practically from the day after my EMG to date...

Fasciculations all over my body(eyes, arms, fingers, legs, you name it), I did had some before the test, but I don't remember so many, and in so many places. Not permanent, but they kind of make their presence clear during the day.

Before that, just the day after my EMG, I thought that, as I was "cleared", it was the right moment to get back my daily 30 min cardio-workout on my elliptical bike, which I left when the symptoms, and which I also endured pretty well... Os so I thought until the next day I felt like I just ran a marathon while carrying an elephant... I was completely wasted.

I just thought "why does this all happened after the EMG?". And those are my daily symptoms, weakness, fatigue and fasciculations. Can't tell for sure if they're progressing, receding, or are just about the same. Sometimes I feel almost clear of all, a nd sometimes I want to run(even with the clonazepam) to the ER room again.. Pain has receded a little, or to be more precise it changed from the burning/tingling/pins and needles stuff, to something more muscular/joint aching type of pain, but mostly the tiredness.

Add to that feeling a weird gag reflex, like a gulp, and a dry mouth, and sometimes a weird swallowing feeling.... I know that anxiety can be the cause but....

To complicate things further I just got the worst cold I've experienced in years...(no fever tough). And now I have some respiratory issues, that give me the ALS creeps, like shorthess of breath, you know the drill...

Finally, the questions:(sorry if they sound absurd)

1. Is there any chance that, I came a day early to the EMG, or that the neurophysiologist got the bad accuracy to miss an "important" spot? I ask this cause the "improved" fasciculations. Or if it was ALS, those already tested(and damaged) spots, should have been with an active denervation process, and not with an apparent "recovery", as it was shown by the EMG.

2. I've read that recovery from a peripheral neuropathy can take weeks, so could this be just "sequels" as my doctor called them, from a previous problem? What could be a clear cut difference between both situations?

3. About that last point, How could I miss something so bothersome as a Neuropathy, and just now I felt the symptoms?

I know I have to discuss this with my doctors but, I needed to talk about it, and hear some word of advice. Thank you for your patience, and the best health for all...
 
Hi, welcome to the forum. Your story is similar in some ways to others here, but everyone is different and it is hard to generalize. I just want to say too that you and others who come here worried should not apologize. I read many people's stories, and sometimes they sound like they could be ALS but more often they don't. Personally I am relieved when I see someone who doesn't sound much like ALS. It is a pretty bad disease so it is nice to be able to tell someone that they probably don't have it.

Your symptoms really don't sound much like ALS to me. ALS does not cause numbness, tingling and pain in the early stages. It causes weakness. And weakness usually doesn't show up the day after a workout that felt good at the time, it shows up while you are trying to do things.

As far as your questions, generally if your ALS is causing problems with your muscles, the denervation process will be pretty advanced. They say that as much as 50% or more of your nerves are lost before you feel noticeable weakness. So you are right, if you already have ALS-based muscle problems then the neurologist should see active denervation.

Unfortunately I don't know anything about peripheral neuropathy so I can't say how well that would fit with your symptoms. As I said, you can actually have quite a bit of motor nerve damage without even being aware of it, so maybe it is not impossible that you could have a mild neuropathy and not notice? But again I don't know that area.

I appreciate your candor about your anxiety, and as you know anxiety itself can cause and worsen many of these symptoms such as twitching and difficulty swallowing. I don't know about all these drugs you are taking for it, sometimes they do not work well on certain people. I wonder if they could be messing you up. Maybe your internist friend could help you try some others. Or even better consider yoga or meditation to help you stay calm.

Good luck and I hope you are able to overcome your anxiety and feel better.
 
Your ALS worries are your own doing. Had you not started following the wrong research trail when you went on the Internet to find out what neuropathy means, you wouldn't be thinking about ALS. Sometimes, that extra bite from the tree of knowledge can be most upsetting to the system.

Like most of your fellow seekers in this section of our board, you have both too much knowledge and too little knowledge about ALS. You know about some of the symptoms and you think that you are displaying them, which is why you think you might have ALS. The thought that you might have ALS creates anxiety in you, and that anxiety manifests itself in even more symptoms that can be misinterpreted to be like symptoms caused by ALS. The more you worry, the more "symptoms" you get and vice versa. And then you come here and ask us to tell you whether you are right or not.

I am not a doctor, but your symptoms don't sound like ALS to me. Apparently, they don't look like ALS either, because a competent (assumed) neurologist has called your condition a peripheral neuropathy -- a diagnosis which is very consistent with your symptoms.

If you want the worries about ALS out of your mind, just stop thinking about them. You put them there when they didn't belong there, and they will remain there until you dismiss them. How long you continue to suffer from these unfounded worries is completely up to you.
 
Thank you hal and trfogey.

Hal, yes, the simplest of logics should indicate that, if the neurologist found something remotely suspicious in the EMG results, he would said so, and obviously it seems that in ALS, when any part of your body is affected, it usually continues to deteriorate(with a clear active denervation), before, or at the same time that other parts of your body are affected too, it doesn't stop, goes elsewhere and "continue later".

Pain, tingling, pins and needles, and other sensory stuff are also not common, as you both mentioned, and I know that too, but you know how your mind plays tricks on you, and you came up with "I must be the one in a million atypical case", and I know how dumb all this sounds.

I don't wanna be sick, trust me, and trfogey, you're absolutely right about having both too much and too little knowledge about the disease. It's just that this weird symptoms caught me so off guard, that I came up with all the worst options in my mind.

But then again as you both mentioned, If I want to torture myself to death forever, it's up to me.

Finally I just want to thank you both for your response, and without trying to sound pleasing just for the sake of it, I truly admire you both, because of your great heart and courage shown by helping others in this board, even anxious baloneys like me.

I'll light a candle for you both, just as you did it for me, and for many others, simply by listening to our stories.

Thanks again, and the best for you all.
 
After reading your post, it seems to me the neurologist thinks you have some kind of self limited pure motor polyneuropathy and this does equate to ALS.

For ALS, you would have active denervation/reinervation and what he saw were traces of old denervation, not new and active. This also points away from ALS.

I think you mentioned you were told you were in a recovery phase now. There is no recovery with ALS; it's a downhill ride with varying degrees of progression.

Bottom line - believe the neurologist - you have something else, a polyneuropathy.

Zaphoon
 
Last edited:
Thanks for your input Zaphoon,

You're right. Even after my second appointment, when I read the EMG interpretation, it was clearly stated that "there was no signs of active denervation on the sites explored", even as they do were damaged by the Neuropathy, and apparently recovering from it, that's why they gave me self limited pure motor polyneuropathy.

I dumbly thought a What if the doc missed a "hot spot"? Yes, as illogical as it sounds... Even with my DX, and even with the whole sort of symptoms I knew that are not so common with ALS(pain, numbness, pins and needles, burning sensations) So I came here and everybody gave me great answers, and support, and obviously said that if there was damage anywhere, in ALS it wouldn't stop for a while, or move to another place, it will continue(the active denervation that wasn't found in my EMG), and it will also affect other areas.

So, I'll make my mind to loose this ALS thoughts, and deal with my polyneuropathy.

But again thanks so much for answering, and my best wishes for you too.
 
Status
Not open for further replies.
Back
Top