Old 11-25-2014, 06:30 PM #1 (permalink)
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Default Lacking feedback from doctors and internet just scares me

Hello

Short about me, 35 male from Norway, read the stickies and tried to understand them to their fullest. I also apologise that his post may be a bit long, but I will try to paragraph it as good as I possibly can. I will not in any way expect you to either read or answer, so if you do I will consider that goodwill on your part of which I really will understand the value of.

So, why am I here?
I'm here because I don't really know where to go next. I am undiagnosed, and never officially diagnosed for ALS. What brings me here is some questions that concerns me regarding my diagnostics progress which started setting off a few alarm bells. None of the doctors have been very good at gettin back to me with info on what they were doing and why, but to try summing it up:

What initiated my concerns for something that might be worth looking into?
I've been struggling a bit with anxiety. Then when it all had calmed down, I noticed these odd fasciculations on my right over arm. Did not think much of it, then the lower arm also started fasciculating a few weeks later. Then the same muscles on the other arm. Then the same sequence happened to both my thighs. Apart from that, a few random twitches everywhere as time passed. I know this is not ALL typical ALS signs, but the thing with opposite sides can be according to sources.

What I admittedly SHOULDN'T have done when looking back.
Of course, I was stupid enough and googled "leamus" and "fasciculations".. by now you all have learned what results ranks the highest in the search engines creating a lot of panic on this theme. I mentioned these fasciculations to my GP and he did some basic reflex tests (arms, stomach, knees, feet) concluding with no findings, but he'd send me to a neuro-exam not wanting to tell me what he were thinking or why.

What was done?
Neurologist, an older man (69 years old), seemed very nice but he didn't tell much either. What he did was some of the same reflex tests as my GP + a few more, had me walk on my toes, heels, some simple muscle strength tests. No EMG or NCV tests were done. He also concluded with no findings. Having read about a bit about ALS semi-involuntary I told him I had a fear of either that or MS, and he once again said nothing pointed that direction. I was happy to hear that and left not thinking much more about it.. for now.

Symptoms how I perceive them and why they worry me:
Already two days later, I started noticing that my right foot has a few toes that aren't as sensory as the rest, and can also be somewhat harder to move, but not completely paralyzed. Can still walk, but feels a bit funny, as if they're not completely in touch with the surface. There's also a small dent on the wrist near the side/edge. May have been there a long time, but again, I'm oversensitive to new symptoms right now.

By a coincidence, I also discovered that items I carry of some weight feels noticeably heavier in my right arm then in my left, yet I am right handed. It's not extraordinary, but an item may easily feel (again, perceived) 25% heavier, and this seems constant. My sensible side tries to see this as just a coincidence, and not really of any meaning and it may just have been like this forever but first now paying attention to it because I feel something is going on. I'm mentioning here now because it's somewhat important for my next questions.

1. Can a neurologist really fully rule out MS and ALS with his clinical exams only?

Comment from my side:
This is also an area the internet is really bad. It's very good at telling you "this makes you have ALS", but it's not so easy to find information about signs that usually rules it out completely. Only signs that confirms it are to be found on most lists.

2. The strength tests performed did not lead him on to detect the difference between the strength of my arms. If he couldn't, how can I know that his tests are that accurate? Is there a real difference between "clinical" weakness and "regular" weakness that would stand out in some special way?

3. Are there any other typical "findings" you know rule it out at a so early stage that further testing isn't necessary?

The reason I ask you now, is whether or not I should pursue this further or if everything that can be done already has been done. I went to talk to my GP regarding my numb foot today, and he didn't really want to hear about it, because now I've been checked by so many doctors for "all these phenomenons" I keep having.

So I may have to look for a new GP if there's any kind of potentially mis-diagnostics here, and this is where I fail to see myself it it is. I'm clearly biased by my fears, but at the same time, I know little about what has REALLY been done to me to exclude serious illness. Any input welcome. Should I push for another and more thorough exam? I know some of you may play the "psychiatrist"-card, and can also inform you that I'm on a waiting list. So I am dealing with this in the most sane way I am able to.

A few words to you who runs this service:
I want to end this post by asking you to keep your hopes up, and keep this community alive. I've been browsing and I see you're doing an excellent job in dealing with what happens to you in your own individual ways, while still being supportive. I feel sorry for the losses you have all too often, but hopefully they leave you some good memories for the times you've had. I really admire you. Not only because of your strength being diagnosed with ALS, but you're running a very successful forum/community.. over time, this is a challenging task and consider me impressed with that. Hats off to you, and keep doing it. You are doing a very important job maintining this.


Kindest regards,
Tom
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Old 11-26-2014, 10:04 PM #2 (permalink)
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Default Re: Lacking feedback from doctors and internet just scares me

Listen to all your doctors, especially your upcoming psychiatrist. All your "phenomenens" as you describe them are not ALS. And your most recent doctor is correct - there's no such thing as "numbness" in ALS. Stay away from Dr. Google. He is your worst friend right now.
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Old 11-27-2014, 09:55 AM #3 (permalink)
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Default Re: Lacking feedback from doctors and internet just scares me

Tom, thank you for being so thorough.
Your doctors gave you good tests.
Yes, they can rule out ALS with simple tests.
If you have ALS, one or more of your muscles would be paralyzed, limp, useless.
The difference in left and right arm strength is not diagnostic of ALS. The test is to find paralyzed muscles.
You don't have ALS.
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Old 11-27-2014, 10:18 AM #4 (permalink)
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Default Re: Lacking feedback from doctors and internet just scares me

Okay, let me make this as simple as I can...

Clinical Weakness is weakness that shows up in the clinic. It is present in a clinical exam and will be spotted by most PCPs and every neuro. Weakness that is perceived in your head, but doesn't show up in the clinic is perceived weakness and not clinical weakness. When you say your neuro had "no findings" after the clinical exam, what you mean is he found no clinical findings of pathology, like clinical weakness.

"Can a neurologist really fully rule out MS and ALS with his clinical exams only?" Yes.

"The strength tests performed did not lead him on to detect the difference between the strength of my arms." Detecting differences between the arms is not the purpose of the test; looking for clinical weakness is the purpose.

"Are there any other typical "findings" you know rule it out at a so early stage that further testing isn't necessary?" Yes, the lack of any of the typical early symptoms and signs.

Your symptoms do not sound like ALS.
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Old 11-27-2014, 10:29 AM #5 (permalink)
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Default Re: Lacking feedback from doctors and internet just scares me

Thank you for your responses.

What I may have failed to communicate properly is that part of my anxiety was due to my GP sending me to a neuro without wanting to say anything about what he thought. And my GP is also quite bad with communication. He's been doing heaps of blood tests too without saying so much about what he's testing for and why, so this lack of information makes me a bit insecure, which is why it was a bit frightening when he sent me to a neuro just like that.

The neurologist wasn't that good at telling what he did and why either, and I think a lot of my anxiety would have died down if they were better at informing in the first place. Just the same as I think internet sites with info on ALS also were better to communicate simple things that absolutely ruled out the disease, rather than mentioning tests to take and symptoms. Especially this explanation between clinical vs. perceived muscle strength and the fact clinical tests can easily rule out the difference. If either my GP or the neuro had been taking enough time to explain this, I would most likely not have made a post here at all. Obviously, something IS going on with my body, but now I know it's not this path I should follow I have to find another one. This was a lot of help to me. Thanks a lot for your time.

Kindest regards,
Tom
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Old 11-27-2014, 10:52 AM #6 (permalink)
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Default Re: Lacking feedback from doctors and internet just scares me

So sorry you are having any health issues at all Tom. Hope you get answers soon as to what is going on. Best of luck to you. At least it doesn't look like ALS. Take care, Kim
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Old 11-27-2014, 11:04 AM #7 (permalink)
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Default Re: Lacking feedback from doctors and internet just scares me

Deep inside I probably didn't think it was, but this forum is full of examples of what can happen when unrational fear is taking the upper hand. Again, thank you. I wish there was something I could do in return for you for your helpful responses. I did however donate $20 to support this excellent forum, and I highly encourage other transients to do so too if they haven't already. As I already said in my first post, you really built something good here and I know from experience that resources are required to maintain something like this. You're doing great!

Kindest regards,
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Old 11-27-2014, 01:46 PM #8 (permalink)
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Default Re: Lacking feedback from doctors and internet just scares me

Tom thank you for your donation and kind words
Best wishes
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