Ever Heard of Going to the Doc too Soon?

[brendapals]

Suzann-

You are too, too funny! Just wanted to let you know I just submitted quiz #2 with 20 minutes to spare on the midnight deadline! At least I hope it was 20 minutes to spare-I always get the time zones messed up on my online classes.

But really, I love your comment! I don't know that I necessarily "rock", but I have managed to build my ALS walk team to over 120 walkers signed up online, and am VERY excited to say that my team goal of $10,000 for research is at 50% right now.

If you would like to see our team page, the address is web.alsa.org/goto/pittcrew
I think they will let me put this web address on here, if not, it's in the thread called "dire diagnosis"

Have a great "hump" day!
Keep the faith,
brenda

 

[suzannj]

Brenda - I'm glad you thought it was funny....Whew! LOL After posting I thought, "Whoa, what if she is completely offended that I swore?" Okay, now you're making me feel bad about myself! You're submitting a test at at midnight, working, putting together an ALS fundraiser, being a mommy and wife and ALLLLLL of the things that go along with that......if you tell me your house is clean and the laundry is always done I'm going to mail you a red cape with a big "S" on it! WOW! I just thought of something: You can have t-shirts made for your walk team that say, "Yeah, We F-ing Rock!" HA! Now take a nap or something would ya'? You're putting the rest of us to shame! LOL

 

[olly]

I agree, 100% that if you are showing symptoms that mirror LMN involvement but have a clean EMG, the symptoms are not caused by ALS.

The EMG can change in ALS when the disease progresses. At least, this is my understanding. People diagnosed with PLS are monitored via EMG's for 3-5 years to make sure there has been no progression to ALS. This has been stated many times on this forum.

The quote I have above regarding EMG changes antedating weakness and atrophy refers to reflecting those changes from a previous EMG, obviously. I did not mean to convey that an initial clean EMG doesn't mean anything. It does. No ALS! The only way ALS wouldn't be ruled out would be if the diagnosed is PLS. After 5 years and no LMN involvement, forget about ALS.

I do not have ALS and doubt I will be diagnosed with any motor neuron disease. Odds are in my favor and if you've not been diagnosed yet, yours too!

Wright, I am convinced again and again that a clean EMG = no ALS. I'll leave the UMN stuff for the docs to figure out and ODDS are, it won't wind up being PLS in most cases.

I'm more in favor of a neuropathy or bulging disk or something.

Zaphoon

hello.
i feel the need to say something here.
after ruling everything out over several years i was given a diagnosed of mnd in nov07.
i have had umn symptoms for the most part i think but 18-24mths ago it was found i had hypotonia after 7yrs,how long its been there i dont know.
i think my neuro thinks its pls but was confused with the hypotonia but no visiable atrophy at the time,though he does know about the fassics.
since my last visit i have started to develop atrophy in the left ankle/foot and my bulbar symptoms have got alot worse.
i am 99% sure it is probably pls and the atrophy is disuse atrophy due to the hypotonia in my left lower leg,and that the hypotonia is from the years of acute umn lesions.
that is what i am telling myself anyway,maybe wright agrees.
either that or it is a case of umn dominant slow progessing als.
i am going to ask for a emg at my next appointment but to be honest its just to satisfy my curiosity,it does not make much difference to me .
my progression has been slow and i am happy with that.
take care.
caroline:razz:

 

[brendapals]

suzann,
Don't even think for a moment that my laundry is done, my toilets are clean, my dishes are caught up or my trash is taken out! My hubby and I decided several months ago that some things can just wait. I feel like I'm on vacation!
I did manage to do 3 loads of clothes today, but now I'm pooped!
And my stove is broken, so I don't have to cook, really I don't do that anyway.:roll::roll:

don't worry about swearing on my account, I think it's ok when we just spell it out on here. Speaking of tshirts for the ALS walk, I ordered them today! I hope to be able to take a "team" picture and post it on here after the walk.

OK, I'll take your advice and go take a nap before football practice is over!
Hugs,
brenda

 

[chrismaya]

My mom was diagnosed by a neurologist with having "age-related dementia" due to hardening of the arteries in the brain. Her primary doc chalked her difficulty swallowing up to the start of Aricept (again with the dementia stuff.)

So two decent docs saw my mom, knew she wasn't thinking clearly and was choking and also had a weird gait, but NO ONE MENTIONED ALS.................

It wasn't until about 6 mos. later that a DIFFERENT neuro finally diagnosed her. You could have knocked me over with a feather.

Sorry to say, I think those early symptoms are never thought of as ALS. It's not the first place a doc goes to.

 

[CindyM]

I have some input for the "going too soon" frame of thinking. I saw my local neurologists yesterday and gave him all the reasons why I suspect I might have MG. He agreed with my hunch, and ordered the blood work, but warned me that only a few of my symptoms point to MG, and anyway, “that is a very hard disease to diagnose.”

"We will do the testing,” he continued, “but be forewarned that it may not show anything. We might be right back where we are right now, treating your symptoms but with no clear answers.”

So there it is, guys. I don't know if this makes a case for not going too soon. I think it rather explains why sometimes there are just no answers! :roll: Cindy

 

[BethU]

Cindy, I hope the tests will give you some "good" answers ... i.e., that you've got something that is treatable and can even be brought to remission. Whatever the outcome, you will have some answers, and know that your neuro has not skipped any possibilities just because a disease is rare.

Fingers crossed.
BethU

 

[CindyM]

I am having a pulmonary "sniff" test today. I broke my own advice to always go to a large ALS center for testing, thinking that if the local guys pick up something then it must be really obvious.

But my last emg showed no abnormalities- even though the one 2 years ago at the clinic was "dirty" in 3 limbs. I know I didn't improve. Proof that these local guys lack experience.

So, in spite of my own best advice, I agreed to let the local hospital perform the sniff test. But I do not have good vibes about their capabilities. For one thing, nobody seems to know what the test is all about or even what part of the hospital I should report to. I just hope they know how to perform the test and read the results, LOL.

So my plan is to go through the motions but if I'm not confident in the results I'll go back to the ALS guys. This is what laziness does to you! :lol: I should have just bit the bullet and gone into the city!

 

[BethU]

Thinking good thoughts for you today, Cindy ...

Hopefully, your hospital will get the job done right.

BethU

 

[lydia]

CindyM

Hi Cindy,

I'm really curious about your EMG results changing for the better when done by those less experienced local guys. Can it really be that they didn't do a good job and missed something? If there is something wrong that an EMG should find, is finding it dependent on the technique of the guy doing the testing and/or his ability to accurately interpret what he's seeing? I mean beyond the obvious level of skill they have by virtue of earning their medical degree. Certainly all doctors are not equal ...I guess my thought is: is doing/interpreting an EMG more art than science, if that phrase conveys what I am trying to get at. I know I am naive here, and I couldn't make it through the sticky on EMG (too much detail; yawn), but I just assumed what shows up on the EMG screen is obvious to the tester. No grey areas; just black and white. I hear stories about radiologists missing things all the time (have a radiologist friend-and the stories she tells!), is there a comparable situation for neuros doing EMGs? Because if there is....wouldn't everyone who fears ALS who gets a clean EMG end up not being reassured by it, thinking it could be the incompetence of the tester?

I am now thinking of my own EMG, 13 muscle pricks in under 20 minutes, and that included the meet and greet with the neuro and me getting dressed and out to the car....

Lydia

 

[BethU]

Hi, Lydia ... I'll answer too, if you don't mind. Yes, the results can be different depending on the person doing the testing and the age of the equipment they are using. My first EMG was in a private doctor's office, and the machine seemed to be ancient, compared to the equipment used in my next EMG, which was at a university MND clinic.

The first doctor had to send the results to a lab to have them evaluated; it took a couple weeks for the result. The second EMG at the clinic gave me the results as soon as they completed the tests. The first EMG was only on one side of my body, and the doctor did not test my tongue, which ... with bulbar onset ... was where my major problem was and still is.

The first EMG results were "clean" ... the neuro said that everything was normal, and there was no evidence of ALS or anything else. The second EMG (6 months later) showed I had denervation in three areas, and led to my diagnosed with ALS.

My advice is ... if it's at all possible, get an EMG done at a large clinic, preferably one connected to a university. Neuros in private practice see so few ALS patients, that I'm sure they do not update expensive diagnostic equipment very often, if ever.

Good luck,
BethU

 

[CindyM]

Beth pretty much explained it. The local fellow does a lot of testing for carpul tunnel and the like, and he is very quick about it. He did insert lots of needles all over my body, but it took less than a half hour and he said everything was ok.

Also, the clinic noticed fasciculations in my right leg. When I went to the local guy this summer, he put the needle right into one of those twitches but found it "clean." Maybe he does not have the best equipment.

The report from the clinic showed reinervation, which is a good thing. It means the nerves are still growing back. I thought I could take a short cut and see if the reinnervation is still happening.

Here's a guestion for Wright: I had reinervation and muscle wasting in my hands back in 2006. Now I have, supposedly, a "clean" emg but the muscle wasting is more pronounced. Could the nerves have repaired, but the muscles get worse?

 

[CB1977]

I would like to comment on this. I recently had an appt to have an EMG. I remember sitting in the doctors office and saying to my wife that the place looked like a dump. The EMG machine looked like it was older than me. The guy did about 5 different spots, but kept saying "see, if you dont hear anything that means everything is good" and then I wouldnt hear anything? My EMG came out good as far as I know. I am going for a second opinion to Ohio State because I felt really uncomfortable about my visit. He also told me some things about ALS when I questioned him that I have confirmed are way off. When I told him I have a lot of fluid getting stuck in my throat and it is making me cough all the time, he said " well, if you had bulbar ALS, you would not be able to cough so that means you dont have it". He also told me that there is no muscle pain with bulbar ALS? I wish I had just gone to OSU to begin with, it was a waste of my time to go to him.

CB in Ohio

 

[wright]

Hey Cindy

Sorry it took me so long to reply to your question, but I simply didn't read your post. I didn't know this thread was so active.

Anyway, if all you have are signs of reinnervation without active denervation, that is a very good sign and points away from ALS (with ALS, reinnervation and active denervation are hallmark signs on the EMG).

What happened to you is you denervated at some point and then simply stopped. This is how peripheral neuropathies typically behave for example.

Your muscle atrophy occurred because of the initial denervation. Typically you can gain the muscle back if the muscle fibers are stimulated to grow within about a year (some studies say 18 months but that is probably pushing it). Sometimes unfortunately the original muscle is never gained. Disuse could certainly come into play during those situations and other times it is unexplained.

We do have stem cells within our skeletal muscle which can differentiate into muscle fibers but they aren't nearly as efficient as the original skeletal muscle fibers. Compensatory mechanism can come into play, though . . . and decent muscle strength can be gained.

I hope that helps


On another note: large academic centers is where one should go to get an EMG if they want the best "service" so to speak. It is an art . . . and if the user knows what he/she is doing . . . should be able to tell you while they're administering the exam . . . what the results are. When I have gotten my EMG's, I have had conversations about the exam and results as the EMG was being done.

One other thing: make sure they are thorough. Lydia, an EMG in 20 minutes is next to impossible . . . even in one limb. I just had an EMG done 2 weeks ago in 3 limbs (18 different muscles done) and it took 3 hours . . . and that was just for the test. That didn't include parking, walking, etc. as you put it. :smile:


CB

You are in good hands at Ohio State. When they give you the results, please believe them. I had mine at the University of Cincinnati but OSU is just as good. They are both MDA certified.

 

[CB1977]

Wright- Thank-you for the feedback. I have one more question- the person I am seeing is an "attendee"? I am not familiar with the medical lingo.....is this a person with experience or a recent grad? I will certainly believe them this time and I am already exploring the alternate routes at the same time. Is the neuromusclular clinic the place to go or should I just request the ALS clinic (they didnt give me a chioce when they called me to set up my appt. in Oct.)? I want to streamline this process so I can put this to rest and focus on an alternate diagnosis. Thanks again for all of your input, it really has been a huge help.

CB in Ohio