Ever Heard of Going to the Doc too Soon?

[mcmom]

follow-up question

I"m not sure if I've seen a direct answer to this question--don't know if there is one. If you are feeling symptoms, twitching and cramping, but EMG comes back normal, is there no ALS? OR could you be feeling symptoms and they are just not strong enough yet to register on and EMG? Should EMG be abnormal as soon as you feel symptoms?

Thanks for your input!

 

[CindyM]

First, the symptoms could be for any number of diseases, most of them treatable. If the EMG comes back negative for ALS, the best thing to do is take that as good news. It is possible (not probably, according to statistics) to get ALS later on, just as it is possible for someone to get ALS later on, even without symptoms today.

It is also possible, (and more probable!) to get hit by a bus or some other such thing.

It is hard not to worry about the symptoms. It took me about 18 months to get used to them. I now longer believe I will get it, although in some ways my symptoms are worse but I feel, in my "bones" that it is something else. Hope this helps, Cindy

 

[Zaphoon]

mcmom,

My understanding with everything the neuros have stated, if the EMG is clean or normal, you do not have ALS. That means ALS is not the cause of those symptoms you are experiencing at the time of the EMG. Always good news.

The EMG is a tool that is used to aid in the diagnosis of many different types of diseases/disorders. It is not used solely for ALS diagnosis. The EMG can lead the docs in many different directions.

The folks that have the hardest wait time (in my opinion), are the folks that are diagnosed with PLS. They will continue to be tested via EMG's for 3-5 years to make sure PLS does not progress into ALS.

Odds are, even with twitching and cramping, ALS is not the culprit.

Zaphoon

 

[awieleba]

I dont want anyone to attack me, but I think that you can too soon. For alot of people als wont be the culprit. I have met someone personally that was told no als and a few clean emgs, now they are not. she also presented with lmn--atrophy and twitching. after a year she got her diagnosed of 'probable MND'. I am one of those in un=diagnosed land, do I dont want to hear things like this either but it happen. I think that its RARE for it to happen that way and I dont want to scare anyone, or myself for that matter. We do come on here to get 'real' answers and this is just one case that I know about and have been talking to and I am telling it like it was for someone else.

 

[CindyM]

I know what you are saying, April. I read those stats too, it is one of the reasons why I kept waiting for the other shoe to drop, so to speak. Plus at the ALS clinic they told me to prepare myself for getting worse, so when my breathing got bad I was scared for sure!

But the mind is an amazing thing. I told my doc today that I am used to these new symptoms. They are worse, but not worse enough to show anybody what disease they belong to. So I'm just going to have them monitor things and repeat the tests yearly, to see if the symptoms get even more worse than they now are. That seems to work for me, at least for now. :smile:

 

[ptich]

A week ago I visited my neuro, after not seeing him for 10 months. My main exhibit was my tongue: its edges became quite rugged, with a clearly visible concavity near the tip. I swear that a year ago the edges were totally smooth and symmetrical. He asked me to move the tongue horizontally left and right, to see if the movements were slow (they weren't). His conclusion: "this is a normal tongue". So the answer is no - there is no such thing as visiting doctor too early: for a small copay, I was handed a great boost in morale

 

[CindyM]

Thanks for reminding us, Pitch. Every day we do not get a DX of ALS is a good day!

 

[fredrik]

i don't know but i think you can go to the neuro to soon.
if i understand everything i read correctly, then a clean EMG after you began with fasics or confirmd atrophy means NO ALS.
if you do the EMG before fasics and atrophy there is a slight risk to miss it.

that's also my own concerns, i did 3 EMG april-june when i felt some weakness only, all clean.
by september-november the atrophy started show and by december the constant fasics started.
so maybe i should ask for another EMG, but i don't no why, if i went to soon to neuro and this is ALS then it would show sooner or later, it won't hide. In that case the diagnose will come and there is nothing to do about it so i am trying to live my life in the moment now and don't chase the diagnose.

wish you all the best!

Fredrik

 

[newbe]

Hello

I am new to this forum,
I have some pretty big concerns about having ALS.
I started having twitches in my whole body fter i took some medication for my reflux.
Prior to that i have just been experiencing some muscle cramping in my right hand and also sometimes my joints would swell.
in July after taking domperidone for my reflux and also patoloc which i had taken before , i starded having this twitches on my abdomen first and then on my other muscles of extremities and face. In the face the twitches were localized in the left side just at the angle of the lips (at the lower lip).
I practiced medicine for about two years and i have some knoledge but my knoledge is not helping me at this time.

In september 2008 i starded feeling my left hand weird when i was grasping things and being aware of als i started to go to the doctors.
Between my first visit to the neurologist and my hand symptom i had some other things added to my list of synptoms.
I felt my left knee weak when i was walking up the stairs.
Also i started bitting my tongue to the left side occasionally.
I started having difficulty pronuncing word but not slurred speech.
I had my first visit with my neurologist in december the 7th and he did some EMG on my left arm and left leg.
The only thing he said he found was slow conduction on the ulnar nerve.
Entrapment syndrome. I had ne pain or numbness though.
After that the symptoms started to get worse. And my mood to.
My face has atrophied ont the left side and also my neck according to my GP.
My strength has been going down on both my left and right hand. My lips twitch and also i think my tongue. My weight has gone down about 20 pound in 5 months.
I had a secong visit with the neurologist yesterday and he said is not ALS.
I see people with the same symptoms that resolve.
He did not think that i have face atrophy though and that makes me think .
I have constant twitches on the arch of my left foot and my calf now and the twitches are spreading towards the other sides of my body.
is this ALS?
please help

 

[Connie]

I think we need to be careful to not wish away reality and proceed with our lives in hopes that a "diagnosis" of ALS will not be made and just "carry on". As many people have said, no doctor wants to diagnose someone with ALS because it is a monster.

However, the actual diagnosis does require that all other possible diseases/ conditions be ruled out. Additionally, motor neuron disease is so varied with each person and makes it difficult and does take time.

My husband started having difficulty speaking in February 2007 and it wasn't until May 2008 that he was diagnosed with ALS. After being evaluated at another agency in September 2008, his diagnosis was said to be PLS as he manifests only upper motor neuron involvement. We were also told that PLS is slower in progression but can change to ALS anytime.

I think it is important to be mindful that we need to make sure that despite whatever the terminology is, we need to address issues such as what if, in fact, our disease progresses, what level of care do we want. Advance directives addressing what measures we want implemented (such as ventilators or whatever), need to be addressed. Even if we are totally healthy, we should have advance directives in place.

 

[Connie]

I am sorry that my previous post sounded harsh and unfeeling.

We all have to be very positive and hopeful and realize that we are all mortal and even those of us who are supposedly "healthy" could be on borrowed time.

I wish I felt strong and positive and not overwhelmed with the reality of my life. I am struggling to cope and be thankful to God for each day that I have with Gordie.

 

[BethU]

newbe ... your symptoms do not sound at all like ALS to me. Since you say you have practiced medicine, and have seen two neurologists who have told you that you don't have ALS, I'm sure you understand that strangers with no medical background (like most of the members of this forum) and who have never examined you are not capable of diagnosing you online.

My suggestion: Ask your GP about some relief for your anxiety, and then work with your neuro to find out what is really going on. He's told you it's not ALS: What does he think it might be? What other paths is he going to explore? What kind of tests will he be ordering?

Good luck in finding an answer ... and take care.

 

[canfiet]

newbe - I had onset of symptoms last year in 02/2008. I started with right leg weakness and started limping. I too have some medical knowledge and thought that I had a nerve injury after a laparoscopic surgery. But looking back - I had been tripping for no reason. I thought that my clumsiness was at an all time high. Then I thought it was my shoes. I had horrible charlie horses and cramps in my legs, but those 12-14 hour days at work in heels were to blame. Then I started having fasciculations everywhere. Started on my stomach after my surgery as I look back. It took 3 months before I saw my GP. I could not walk on my tiptoes, I could not run at that time at all. I still thought peroneal nerve injury. At my first visit to the neurologist, he was concerned and told me that he thought I had ALS. I knew this to be extremely BAD! My 10 year old son went with me to the Neuro Appt and trust me the ride home was horrible. Out of all my initial tests the LP, EMG, and MRI were abnormal. I completed a month of IVIG with minimal benefits. I then got a second opinion in October - 4 months later and was told by the ALS specialist that he really didn't think this was chronic and "only time will tell". But definitely tried to reassure me that this wasn't CHRONIC. I was so happy. I had even told my mother earlier in October that I thought I had ALS. My husband and mother was present for that appt. We celebrated and I planned on returning back to work soon with my new disability. Follow up appt in December showed subtle upper extremity weakness and brisk reflexes. Studies were reordered but I refused to have anything done until after the holidays and vacation. My second EMG this month showed abnormalities in my legs, spine, and face. Great. Now I have the diagnosis. However, it took 7 months, 2 EMG's, multiple MRI's and 2 MD's. Those 7 months were horrible. Now everything makes sense. I recommend to continue to seek out what your diagnosis is. However, time will only tell. Good Luck! Teresa

 

[brendapals]

Teresa,

Thanks for sharing your story, very brief, and to the point. I'm glad you found the forum-you'll find a lot of support and friendship here, I'm sure.
take good care,
-b

 

[canfiet]

brendapals,

Thank you. I really think that time will tell with alot of people who are having problems. I also think that being proactive in your health care is important as well. I know that doctors have a difficult time with this diagnosis as well as others. This is a tough disease anyway we look at it...as a patient, as a caregiver, as a family member, and as the physician. It just sucks! My mother would not approve of that statement. How unprofessional but it is an excellent descriptive word at this point in time. Take Care - Teresa