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Zaria

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Learn about ALS
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New York
I don't know what is driving what. I began having muscle twitches in December 2010.
Then muscle cramps in January and some finger numbness/tingling in March. The muscle
twitches, while not gone, seem to be less that when they first appeared -- or so I think.
The cramps for a period of days went away but are back. Last week, I began to have trouble
pronouncing "r", especially when blended with other consonants (i.e., "br"). A constant has
been mid back pain. I'm experiencing a feeling of muscle fatigue though not sure if it would be actual weakness.

I've had a bunch of tests: Brain/spinal MRI (normal); EMG of legs and arms (normal); and my neuro clinical exam was normal. The only test that came back provisionally abnormal was for Lyme - there are a couple of levels and I'm partially abnormal on level two, which would cause the more conservative doctors to say I don't have Lyme but less conservative to treat).
I don't want to treat before I rule other possible causes out.

Here are my questions:

-Do I need an EMG of of paraspinal muslces to rule out bulbar onset of ALS or is the EMG of arms and legs sufficient?
-Can EMGs miss early onset ALS if symptoms are already present (fasciulations and muscle cramping).

Though in NYC, I've not found a neurologist who I feel has taken the proper interest in diagnosing what is going on since my clinical exam is normal. I just don't know how to understand what his happening to my body.

Is it reasonable to be concerned about ALS based on what I'm describing? I'd be very grateful for your comments.

Zaria
 
Zaria, I don't think you have any concern what so ever, that you have ALS. Your EMG is normal and you have no weakness. It's usually profound weakness somewhere, that starts the ALS journey, and that is after all other possible conditions have been rules out.

The fact that you have had extensive testing, tells me that your neurologist has been taking your symptoms seriously. He has found no clinical signs to point him in a direction in which a diagnosis can be made. You need to be very thankful for that.

Enjoy your son and don't waste precious time worrying about ALS.
 
Here are my questions:

-Do I need an EMG of of paraspinal muslces to rule out bulbar onset of ALS or is the EMG of arms and legs sufficient?

If you had (and have) symptoms in your arms and legs and the EMG of those limbs was normal and your clinical neurological exam was normal, you don't have ALS. What you describe as bulbar symptoms aren't bulbar symptoms, else your clinical neurological exam would not have been normal.

-Can EMGs miss early onset ALS if symptoms are already present (fasciulations and muscle cramping).

It will not miss lower motor neuron problems if they are present. Your EMG was normal so you don't have lower motor neuron problems going on. Upper motor neuron problems are detected during the clinical neurological exam. Your clinical neurological exam was normal. Therefore, you don't have upper motor neuron problems.

You have to have both UMN and LMN problems to have ALS. You have neither. Therefore, you do not have ALS.

Though in NYC, I've not found a neurologist who I feel has taken the proper interest in diagnosing what is going on since my clinical exam is normal. I just don't know how to understand what his happening to my body.

If all of your neurological examinations are normal and tests such as the EMG/NCV show no subclinical problems, then your problems are not neurological in origin. I would expect him to send you back to your family practice doctor for further followup. Then your family practice doctor can think a little deeper and figure out some non-neurological possibilities.

Is it reasonable to be concerned about ALS based on what I'm describing? I'd be very grateful for your comments.

No, it is not reasonable, at this point. Before you went to the neuro, it was a very, very remote possibility -- there were better odds of your hitting the lottery with a random ticket than for your having ALS. Now that you've had all the testing, it's been ruled out and you have been given a valuable lesson about symptom chasing on the Internet -- don't do it!

However, I imagine that you'll ignore that advice like most people in your position who come here do, so enjoy the site and try to learn a little about a disease that gets very little awareness.

Good luck to you.
 
If the results came back Lyme related, then why would you not want to treat for Lyme? After-all, there is no treatment for ALS and if you don't treat Lyme symptoms, I believe you can wind up in a very bad way.
 
Was your lyme test the Western Blot? If not, you need to take it, as that is the only somewhat reliable test for lyme – the Elisa test is not reliable.

Find a "Lyme Literate" doctor on the lyme websites and have them test you. If you don't catch lyme early on, it can cause many neurological problems.

Good luck!
 
Re: Single Mom of 5yo Boy Frightened - Continued

Original poster here --

First, thank you all for your thoughtful replies. I realize that my concerns sound exaggerated to most everyone. Please know that I can be "convinced" that I don't have ALS. What I need is to have some questions answered in a way that makes sense to me. The two neurologists I've seen have had such narrow views of ALS and, from what I read on the Internet, there is a wide range of ways that it presents -- that it's often not such an easy diagnosis to make. So let me try it just one more time here. And if it makes sense what I hear back, I will do my best to calm myself.

I did have an EMG on my arms and legs around a month ago which was negative. I did have fasciculations then and muscle cramping. So to my mind it is a good sign that the EMG was negative because I already had symptoms. I have since had a lessening of fasciculations, but an increase in muscle fatigue -- I wake up in the morning with pain in the muscles above my knees and elbows and in my mid back/torso. It stays through most of the day though there is some waxing and waning. At an early stage, does the feeling of muscle fatigue wax and wane and does this presentation then turn to clinical weakness if it's ALS? Is it possible that the EMG was too early?

A couple of weeks after the EMG, I started to have speech problems, which has really heightened my anxiety. Every time I say a word with the letter "r" in it, my mouth/jaw struggles. So, instead of saying "grilled cheese", my son laughs and tells me I've said "girl" cheese. If I exaggerate pressure on the front of my mouth, I can pronounce the "r" and "r blends" such as "br", "pr", etc better but I really have to strain my mouth. I feel soreness in my cheek muscles and the sides of my tongue. This speech problem started a week ago and has not let up.

In combination with my mid-back (torso) pain, I can't help but wonder if this is some kind of early sign of a bulbar syndrome. I just have no idea of how that form of ALS presents or progresses. Combined with the arm and leg cramping and feeling of fatigue, I am left very worried. Does anyone out there think I should have a tongue EMG or torso EMG?

I will get my Lyme results back this week. I've had the ELISA and tested positive. Then I had the Western Blot and tested positive on the Igm part, though not the Igg. Usually, the chronic Lyme diagnosis requires the Igg to be positive and the symptoms I have would be related to chronic Lyme (I owned a second home in a wooded area for 11 years from 1996 - 2007). Of course I know that Lyme tests are considered highly unreliable by many. I suppose I could be treated with antibiotics and see if that helps, but as many of you know, Lyme and ALS symptoms are often confused at the beginning. I just would like to know if my progression or my symptoms now should be a cause for worry on the ALS front based on what you folks think because Lyme is so hard to pin down. I'm sure you've all had trouble finding the right doctor -- one who listens like his or her car is not double-parked and will form a relationship with you. That's why I'm here.

Again, I can be convinced that this all isn't ALS if people in the know give me a good sense of why I should. Very grateful for your responses. I truly am scared since I don't have a diagnosis and clearly something has been wrong in my body for several months.

Zaria
 
What made you think you have ALS in the first place? Spell out the symptoms and progression of disability that lead you to this conclusion.

And, to be frank with you, the claim that you make that ALS presents in a "wide range of ways" is simply not true, unless you call less than ten (with three specific ways head and shoulders above the rest, in order of frequency) many. I've read the stories of literally hundreds of PALS over the past three years and have always been struck by how similar the stories are, within the three broad categories of arm onset, leg onset, and bulbar onset. I've seen very few respiratory onset cases, but I have personally experienced the onset of respiratory symptoms and my experience parallels the few stories of respiratory onset that I have been able to find.

You say "Please know that I can be "convinced" that I don't have ALS." My question to you is: why should we spend the energy to try?
 
Trfogey -

I can't tell you why you should make the effort to try to provide me with information to allay my fears
other than to say that I thought this site was meant to share information with people concerned about
ALS. If it feels like a waste of your time to try to educate someone about the signs of ALS, then you
shouldn't. I don't have your experience so I was hoping that you or someone could educate me so I
might be able to put my fears to rest.

Fasciculations, muscle cramps, numbness/tingling, and then speech problems......These do seem to
be associated with ALS but are not necessarily ALS. I just don't know how it all works. -z
 
What you describe may seem to be associated with ALS but are not. Go back to the doc and let them find out what it is.

AL.
 
Zaria, you HAVE been told from experienced people that your symptoms sound nothing like ALS. In fact you have had you post and all questions contained in it, patiently answered by a hugely knowledgable member.

There is not much else to be said. I had a friend from church who passed away last year after a 3 year battle with MND. Her first symptom was a finger that STOPPED working. That all, just a weak finger, now she is gone. That type of onset IS common. A toe, a finger, occasionally a shoulder. It's not a huge bunch of random aches, pain, feeling of muscle weakness, random twitches. It's localized, dramatic and deadly...............this does not sound like you at all. We see so many people come here and get themselves I'll with worry. Hey I couldn't get up one flight of stairs this morning and while attempting fell flat on my face. I have weakness, twitching all over. What I do not have is ALS or any anxiety about it. Why, because life is just so precious and short, I really can't be bothered letting anxiety, wipe the smile off my face, and cause my 5 children unnecessary worry. THEY are just too precious.

Trust the experts, they would be telling you if you had any sort of MND.

Stay well, and we DO care. Aly
 
Re: Single Mom of 5yo Boy Frightened - Continued

OK, Zaria. I'll continue along a little further with you. In a prior post, you said the following:

I will get my Lyme results back this week. I've had the ELISA and tested positive. Then I had the Western Blot and tested positive on the Igm part, though not the Igg. Usually, the chronic Lyme diagnosis requires the Igg to be positive and the symptoms I have would be related to chronic Lyme (I owned a second home in a wooded area for 11 years from 1996 - 2007).

Correct me if I am wrong, but it appears that you are willing to disbelieve that you have chronic Lyme disease because you do not meet the diagnostic criteria.

Here are the El Escorial criteria for the diagnosis of ALS:

--------------------

The diagnosis of Amyotrophic Lateral Sclerosis (ALS) requires

A. the presence of:
(A:1) evidence of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
(A:2) evidence of upper motor neuron (UMN) degeneration by clinical examination, and
(A:3) progressive spread of symptoms or signs within a region or to other regions, as determined by history or examination, together with

B. the absence of:
(B:1) electrophysiological and pathological evidence of other disease processes that might explain the signs of LMN and/or UMN degeneration, and
(B:2) neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs.

Diagnostic Categories

Clinically Definite ALS: is defined on clinical evidence alone by the presence of UMN, as well as LMN signs, in three regions.

Clinically Probable ALS
: is defined on clinical evidence alone by UMN and LMN signs in at least two regions with some UMN signs necessarily rostral to (above) the LMN signs.

The terms Clinically Probable ALS - Laboratory-supported and Clinically Possible ALS are used to describe these categories of clinical certainty on clinical and criteria or only clinical criteria:

Clinically Probable - Laboratory-supported ALS
: is defined when clinical signs of UMN and LMN dysfunction are in only one region, or when UMN signs alone are present in one region, and LMN signs defined by EMG criteria are present in at least two limbs, with proper application of neuroimaging and clinical laboratory protocols to exclude other causes.

Clinically Possible ALS: is defined when clinical signs of UMN and LMN dysfunction are found together in only one region or UMN signs are found alone in two or more regions; or LMN signs are found rostral to UMN signs and the diagnosis of Clinically Probable - Laboratory-supported ALS cannot be proven by evidence on clinical grounds in conjunction with electrodiagnostic, neurophysiologic, neuroimaging or clinical laboratory studies. Other diagnoses must have been excluded to accept a diagnosis of Clinically possible ALS.

----------------------

You don't meet any of these criteria -- not even Clinically Possible ALS -- because you don't have signs of either UMN degeneration or LMN degeneration in any region of your body. Your clinical neurological exam was normal and the EMGs of your limbs didn't find any subclinical LMN degeneration.

If you can suspend belief in your having chronic Lyme disease, even though you have a positive ELISA test and some indications of problems in the Western Blot test, why do you insist on believing that you might have ALS when you meet none of the diagnostic criteria for it at this time?

That seems incredibly logically inconsistent to me.
 
Zaria

Can I suggest you ask your doctor what is causing your speaking difficulty? There are a lot of possibilities.

I'm not a doctor--but look at the sticky posts and read some by Wright on EMG. He's the resident expert on EMG results. With what you think is weakness and with the fasciculations--it positively would have shown up on the EMG. In ALS--things show up on the EMG that you don't even notice yet. Those are the 'sub-clinical' findings, I believe.

See if your doc will repeat the Western Blot--or ask him what the positive side means. Look at the CDC -- they have some info on Lyme Disease and the testing for it.

Back pain is something I'm extremely familiar with. Back pain makes us walk funny--even though you might not realize it--and that makes our leo gs tired because we compensate to ease pain automatically--not consciously.

The symptom that sent me here was a finger that wouldn't work--that progressed to the entire hand and loss of muscle in that hand. It would usually start in one area and move to another.

They can do speech testing as well. If it is concerning--ask the doctor what he thinks might be causing it. He should certainly be able to hear it.

Muscle weakness has a lot of causes. Did they test for things like MG? (In simple terms--muscle weakness that improves with rest) Lots of things to check.

But the EMG means you're clear of ALS. No one here is trying to say there isn't something wrong--just pointing out that it's not ALS based on the clean EMG testing done.
 
First of all, thanks everyone. I feel that I've gotten a lot more information and reassurance from your replies than any doctor I've seen to date. I respect your knowledge about ALS. I just want to follow up to some of your replies.

trfogey....."If you can suspend belief in your having chronic Lyme disease, even though you have a positive ELISA test and some indications of problems in the Western Blot test, why do you insist on believing that you might have ALS when you meet none of the diagnostic criteria for it at this time?"

I just want to rule out other causes where possible as Chronic Lyme does not have agreed upon diagnostic criteria. Basically, I would be signing on to possibly months of antibiotic treatment without really knowing if I have the virus since in most cases can't be isolated.

Alyoop...As far as a finger or leg that stops working, I guess I just don't quite understand how that happens. Did you just wake up one morning and have no use of your finger or was it a more gradual process? I wondered about ALS because I had both fasciculations and muscle fatigue and I wasn't sure if the fatigue (or whatever it is) would progress -- how it all worked. Could you just clarify. No, I haven't had any tests for MG and don't know what they are. I'll now research this.

My last question because I don't quite understand, is the following. Is there a different work-up for bulbar symptoms than an EMG of the limbs and the standard clinical neuro exam? What does bulbar onset look like?

I ask because I'm truly interested but I want you guys to know that you've helped very much to lessen my fears about ALS. I'm genuinely appreciative. I'm going to let it go and pursue other paths. Lord knows why I'm having so much trouble pronouncing the letter "r'!


I will keep you in my prayers and plan to make a donation to your website. You're an important resource. I wish for a cure for all those who have ALS. Thank you for taking the time out to answer my questions. -z
 
I just want to rule out other causes where possible as Chronic Lyme does not have agreed upon diagnostic criteria. Basically, I would be signing on to possibly months of antibiotic treatment without really knowing if I have the virus since in most cases can't be isolated.

First of all, Lyme is not a viral infection -- it is a bacterial infection, specifically from bacteria of the genus Borrelia. If Lyme disease were viral in origin, antibiotics would have no effect on it.

Second, ALS does have very specific diagnostic criteria, with four increasingly narrowing steps to go through to get to a definitive diagnosis -- one reason it takes time to get an ALS diagnosis. Your examination and test results don't even place you near the ladder, much less approaching the top rung.

My last question because I don't quite understand, is the following. Is there a different work-up for bulbar symptoms than an EMG of the limbs and the standard clinical neuro exam? What does bulbar onset look like?

The typical initial symptom of bulbar ALS onset is slurred speech. Early bulbar patients are often suspected of being intoxicated because of the slurring.

Your doctor can get his first evaluation of your bulbar function simply by listening to you speak. If he hears anything that concerns him, he may ask you to open your mouth so that he can watch you move your tongue around in your mouth and look for irregularities in the muscle movements in your tongue. Finally, he might check how well you can move your lips around and whether or not you can keep them sealed against mild pressure. He may do all of the tongue and lip exams even if he didn't hear anything of concern in your speech, just to be thorough -- some do, some don't.

Hope this helps.
 
Zaria, it was a lady that i Knew from my church that died from ALS, not me!
The weakness that comes with ALS, STOPS you functioning as you did. Its not a feeling of weakness. Its when you cant button your shirt, change the gear in the car, pull your trousers up. Walk up a hill, etc. The feeling of muscle weakness is usually a lack of stamina that does not show up on Medical examination. Weakness will definitely show up when a clinical examination is done correctly and thoroughly.
The reason why you dont really "get It" is because you have no weakness. That is a fantastic sign.

I will not Comment on the workup for bulbar ALS, as I really am not sure. I certainly did however, have a needle in my tongue during a very thorough EMG at the beginning of my long journey. I do not have ALS thankfully and after 4 years still remain without a definite Diagnosis, although on the El escorial scale I still sit in the possible group. Time will tell, but I will not wait around worrying as I said before. Its just too much fun out there, walking while I can :). Many others on here cannot, and we owe it to them to enjoy all that we have and every step we take. THAT is the MOST important lesson I have learnt from this precious website.
 
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