Leading towards MND

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Leading towards MND

Postby TDenver on March 21st, 2014, 1:39 pm

Hi All. I hate to be the person here who ads to anxiety but hopefully others can relate/have similar outcomes. I've been twitching for about 3 months. No muscle loss but my speech has been a bit slurred and I've been super exhausted. I had an EMG in Jan that came back normal. Since I've had every test my GP can think of with no real results. Yesterday he ordered an MRI and it came back suggestive of ALS. I went to the nuero today for another EMG and it seems to indicate some kind of MND. He didn't diagnose ALS yet but wants to do more testing. He ordered about 10 different blood tests and said it could be a different MND or a virus. I fear the worse because he said its going down the ALS path but my symptoms are a-symptomatic. I'm young, in great shape, eat healthy and still able to do sports. My fasciculation's are bad but other than that, the brain fog, and the fatigue I appear to be normal. I always thought the slurring was due to tired, I seem fine when I read my kids books at night, but i really struggle through meetings at work. Anyone thoughts here?
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Re: Leading towards MND

Postby bobajojo on March 21st, 2014, 2:05 pm

I don't think anyone here can do better than your neurologist. But I will say that as far as I know, an MRI can not be suggestive of ALS. Its my understanding that an MRI is used to rule out other causes of symptoms but the EMG would be the test to point towards MND, not an MRI. That's my understanding.

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Re: Leading towards MND

Postby Yuliasir on March 21st, 2014, 2:07 pm

TDenver,
it is sad to hear that doctors assume you may have ALS or other MND.
but still, your situation is clearly different from the vast majority of people here becasue most of them have clean MRI/EMG.
However, even your doctors do not find any clinical symptomes - only some evidences on EMG/MRI that you may have certain damage (central probably). Viral infection often causes such damages so it is still possible for you to have viral neuroinfection. Brainfog actually suggests that it may be a viral one becasue ALS seldom manifests as brainfog. it could slightly affect mental abilities but only at late stages.
First of all you should try to keep your daily life. We here on board have at least one story when the guy was diagnosed for ALS on the basis of misinterpreted EMG and then cancelled by top country ALS center.

lack of physical symptomes, young age and second opinion should be your hope and support for now.

Slight sulrring of speech is really nothing, especailly if you do not progress towards mumbling.

I also agree with Matt that MRI would rather suggest about MS than for ALS.
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Re: Leading towards MND

Postby bobajojo on March 21st, 2014, 3:26 pm

TDenver,

Question for you. Why did your neuro perform a 2nd EMG just 2 months after you had a clean one? Also, you said your GP ordered the MRI. If he's the one saying it suggests MND, that's not reliable at all. Listen to your neuro.

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Re: Leading towards MND

Postby wjjw on March 21st, 2014, 4:25 pm

bobajojo wrote:TDenver,

Question for you. Why did your neuro perform a 2nd EMG just 2 months after you had a clean one? Also, you said your GP ordered the MRI. If he's the one saying it suggests MND, that's not reliable at all. Listen to your neuro.

Matt

Matt is correct, something doesn't seem right about the MRI. See here:
Standard MRI scans are normal in people with ALS. However, they can reveal evidence of other problems that may be causing the symptoms, such as a spinal cord tumor, a herniated disk in the neck that compresses the spinal cord, syringomyelia (a cyst in the spinal cord), or cervical spondylosis (abnormal wear affecting the spine in the neck).


That is from here: http://www.ninds.nih.gov/disorders/amyo ... il_ALS.htm

Cheers,
Bill
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Re: Leading towards MND

Postby TDenver on March 21st, 2014, 4:50 pm

The first time I saw my nuero he was actually treating my wife for MS (we hit the neurological lottery i guess?) and I wasn't sleeping and had just started fasciculation's. He thought it might be stress and did a very basic EMG. He said I looked fine, actually when I asked his words were "you don't have ALS". So i kept on trucking. My GP ordered the MRI and the radiologist said it was "suggestive of ALS". When I went back today he did a more exhaustive EMG and other motor test and said there is something neurological going on and ALS could be one of them, but I am not giving you that diagnosis. So more digging is being done, i've given so much blood the past month I am starting to look like a junkie. I know a lot of people with BFS have had tests done so I thought I'd ask around. to be clear my neuro did say that you can't diagnose als from an MRI, but it's like MS, you can clinically diagnose it with a combination of tests. Thanks all for the responses. Viral is also something he's looking at.
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Re: Leading towards MND

Postby bobajojo on March 21st, 2014, 4:59 pm

OK, that makes a little more sense. So, do you know what it was in your clinical exam that made him say something was going on neurologically? I mean, if he dismissed you with benign fasciculations just two months ago, what had him do more extensive testing?
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Re: Leading towards MND

Postby RobJ on March 21st, 2014, 5:02 pm

u seem to be a little inconsistent which strongly suggest anxiety.

sounds like ur doctors suck.

stay away for awhile. u start to mumble or hav real weakness then go back
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Re: Leading towards MND

Postby veryworried123 on March 21st, 2014, 5:09 pm

I agree

What showed up on your Nero exam that was not normal?
Outside of the emg? Weakness?

Can you be more specific
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Re: Leading towards MND

Postby TDenver on March 21st, 2014, 5:41 pm

I have faith in my doc, but the brain is a hard thing to diagnose! I'm exhausted so sorry if I'm being inconsistent, I assure you it's not the anxiety ;) The neuro exam i had some weakness in my tongue, some slurring, and weakness in my arm and back muscles. Again he said it could be a virus, or some other neurological disorder and is sending me to another Neurologist with very impressive credentials as he said my symptoms are asymptomatic and need more investigation. At first he was shocked that the Radiologist would put that the results suggest ALS, but after the exam he seemed to think the two could be related. His words on the MRI were "non specific findings" but with other symptoms could be used to identify MND.

I am not a kid with anxiety, I am a business exec with a family, I know what anxiety feels like but this is bigger. What confuses me is the brain fog, my intolerance to alcohol, and the fact that I don't feel weak physically, just mentally exhausted.
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Re: Leading towards MND

Postby ShawnW on March 21st, 2014, 5:50 pm

This can not be correct. You can not diagnose *** through an MRI. You can see myelomalacia which is a nonspecific finding.

To have a normal neuro exam, then have a MRI showing nonspecific brain lesions, then go back to the neuro and now he finds something would either mean your neurologist totally missed it on initial exam (unlikely) or you developed something in very short order (which again unlikely) and the MRI was incidental.

I certainly wouldn't jump to any conclusions. Can you be more specific about the findings on the neuro exam?
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Re: Leading towards MND

Postby ShawnW on March 21st, 2014, 5:54 pm

TDenver wrote:I have faith in my doc, but the brain is a hard thing to diagnose! I'm exhausted so sorry if I'm being inconsistent, I assure you it's not the anxiety ;) The neuro exam i had some weakness in my tongue, some slurring, and weakness in my arm and back muscles. Again he said it could be a virus, or some other neurological disorder and is sending me to another Neurologist with very impressive credentials as he said my symptoms are asymptomatic and need more investigation. At first he was shocked that the Radiologist would put that the results suggest ALS, but after the exam he seemed to think the two could be related. His words on the MRI were "non specific findings" but with other symptoms could be used to identify MND.

I am not a kid with anxiety, I am a business exec with a family, I know what anxiety feels like but this is bigger. What confuses me is the brain fog, my intolerance to alcohol, and the fact that I don't feel weak physically, just mentally exhausted.


Ok, this makes a bit more sense to me. There are some nonspecific findings on MRI's that could rarely be associated with *** and many other disease processes. May I ask where in the arm is your weakness? Also, how long have you been slurring words? How did he assess weakness in your tongue and back?
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Re: Leading towards MND

Postby TDenver on March 21st, 2014, 6:52 pm

Weakness in one arm and back from the response of the EMG. I've been slurring since december. It's not all the time, but enough that the people close to me notice. They say I sound tired, Iike i answered the phone in the middle of the night. I've been able to mask from colleagues by speaking slowly and avoiding certain words. Again it's not all the time but most of the time I notice. He assessed my slurring by repeating certain sounds, and my tongue movements back and forth, the speed in which I can move it I assume?
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Re: Leading towards MND

Postby ShawnW on March 21st, 2014, 7:35 pm

TDenver wrote:Weakness in one arm and back from the response of the EMG. I've been slurring since december. It's not all the time, but enough that the people close to me notice. They say I sound tired, Iike i answered the phone in the middle of the night. I've been able to mask from colleagues by speaking slowly and avoiding certain words. Again it's not all the time but most of the time I notice. He assessed my slurring by repeating certain sounds, and my tongue movements back and forth, the speed in which I can move it I assume?


How old are you? I would think if this were bulbar that you would see significant worsening of the slurring in a 3+month period of time. Any problems with swallowing? Did he believe you had speech problems? Also, what kinds of words? Can you say them sometimes and not others...or there are certain sounds you can never pronounce? What sounds did he have you pronounce and which ones did you have problems with? And you say he picked up weakness by EMG in the arm and back, but doesn't pick up on the clinical exam? What about your reflexes...any problems with the reflexes?
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Re: Leading towards MND

Postby ShawnW on March 21st, 2014, 7:59 pm

Also, if you don't mind tell me a bit more about your fasiculations. Whole body? Hot spots? Just one spot? Come and go?
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Re: Leading towards MND

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