Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

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Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Xina535 on March 7th, 2014, 12:40 pm

Hi Everyone,

While my blood is being evauluated by the Rheumatologist (for further ANA and inflammation testing, due to the pains I have), I am also being sent to an orthopedic for the first time, since the left thigh has been becoming harder (stiff), more painful and is becoming much more painful in my left hip area, which the rheumatologist thinks is not my hip, but a butt muscle.

So I have an appt on 19-Mar at the Orthopedic. I am happy to go, since I believe they will do a CT Scan of my left/hip (no image has been done to it yet), but they also offer (at extra cost) for a 'Sinfomed EMG' test to be done. It looks they will just attached electrode patches on the skin, not needles in the muscles. I have not had an EMG done, and I am actually still scared as hell to get one, so I am wondering what this other EMG test is. The description is in German but it looks like the purpose of it is to detect muscle tension and weakness. It says with this test, it will give you an actual corret status of your muslces. It will test muscles imbalances, the difference between muscle tension and relaxation, range of motion limits, etc. Then they have an EMG Biofeedback therapie depending on the results.

Does anyone know about this sort of EMG? Is it the same as the needle one done by neurologists?
I know for a FACT they will find muscles stiffness/tension, I know I have that, no doubt! So if they have findings, like muscle stiffness, does that mean my EMG is then 'not clean'? I am scared that the findings will be 'positive' and that indicates something terrible. I read on here all the time about 'clean EMG = no ALS", so I am scared to not have a clean EMG. Does that make sense?


Also, I am in therapy and my doctor wants me to push myself to face my fears so that I can overcome them. My homework is to learn more about ALS or put myself in more situations where my fear is more exposed. So I went to ALS.net today. I saw on this page, they say that first/early signs are muscle twitches.

http://www.als.net/whatisals#4

and well, I am freaked out, just as expected. My hands are sweating as I am typing this.
I thought twitches come after weakness!??!?

Also, it says on there 'muscles stiffness' as middle stage, so again, freaking out!!!

I tried searching on here to see if this website was mentioned before and I did not have luck finding anything. Any senior members on here or people who had EMGs care to share their advice and thoughts?
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby veryworried123 on March 7th, 2014, 12:46 pm

This has been discussed many times

read Calling Twitchydoc and Bobajojo - can you reconcile opinion?

essentially yes it can occur but your referring to 4-6% of all cases of a*& and those typically had emg changes or other signs

I also think many senior members will respond with more answers
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Yuliasir on March 7th, 2014, 1:21 pm

Not being a doctor i still must admit that having problems in a butt muscle may rather mean you have spinal issues which also cause muscle tension and pain etc. ALS usually spreads from distal to proximal parts, so having ALS-related problems with the butt muscle you must defintely have quite obvious damage of the foot and hip and tigh.

I also wonder a bit about your therapy methods... not all people are contraphobic (I am for example, but I had visited ALS sites once or twice and it was enough for me).

as for twitches, really read the post suggested above. Especially the last pages.

EMG as you describe must be so called surface EMG, which i often a part of regular EMG test. It is not so specific as needle one but also gives a good idea if there is something wrong with your musculature.
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Yuliasir on March 7th, 2014, 1:29 pm

I DO NOT HAVE A CLEAN EMG - i had some fine trembling activity registered, and doctor was poking me again and again in order to study - if this is nasty or not, he said. finally he wrote - "no signs of MND" on my paper.
look, should you have stiffnes (spasticity) caused by UMN damage, you would have asymmetric reflexes, probbaly certain reflectory signs showing damage of upper motor neurons, etc. Since you were sent to orthopedist, not to neurologist, it looks like you have mechanical troubles rather than electricalones (spine not nerves).
Surface EMG is frequently used in case of such mechanical troubles (I know that becasue one of my doctors has 2 disks removed and a hell of pain in the leg and stiffnes and limping too. She went through 2 spinal surgeries...) so she was put through all kinds of such tests like surface, needle, TCMS etc.
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Xina535 on March 7th, 2014, 1:40 pm

[quote="Yuliasir"]
I also wonder a bit about your therapy methods... not all people are contraphobic (I am for example, but I had visited ALS sites once or twice and it was enough for me).

as for twitches, really read the post suggested above. Especially the last pages.

quote]

Yea, my therapist told me I must first become more and more afraid, so I can identify when symptoms of fear appear and what those symptoms are. I am supposed to log every time I become panicky, write down what happened, what happened to my body and what my reaction was (did I cry, did I take medicine, did I run away?).

Also Yuliasir, thank you for helping me with what kind of EMG that is. So if it is 'dirty' - or 'not clean', then that does not mean something terrible? I think I could faint if he says it is not normal. And I am already afraid of that NOW because I know it's going to show problems with tension, at the very least. Baby steps to 19-Mar, baby steps to 19-Mar...
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Xina535 on March 7th, 2014, 1:44 pm

Oh and....so if the stiffness is mechanical, then that also should not mean....you know what?

I learned more about what spascicity is...I think you taught me. It is when your body goes into a bad muscle spasm/cramp which is painful and can deform you, right? And this is what the 'pain' management in ALS is about.

From my knowledge, I have not had one muscle cramp. Perhaps spasms, which are just like more intense twitches. I haven't had any cramping where something gets locked and I can't move for a minute, and it is painful....I have not had that.
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Xina535 on March 7th, 2014, 1:46 pm

I did have a nerve conduction test of my arms and hands in Jan. It was normal. Would that have shown any upper motor neuron damage?
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby wjjw on March 7th, 2014, 2:20 pm

Xina535 wrote:I saw on this page, they say that first/early signs are muscle twitches.

For the record, if you're going to read this stuff and freak out, at least make sure you read it carefully. It says "in one of their arms or legs", not "throughout their body."

Let me guess ... "yeah BUT... I have stiffness too" ...

Anytime you want to bet me a large sum of money that you don't have it, please go for it!! I accept Paypal. :)

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Yuliasir on March 7th, 2014, 3:25 pm

As far as I understand, neuroconduction shows general nerve conductivity status and also measures the speed of the signal (which parltly may be dependent on UMn consition, but I am not sure). it is however good estimation of your electricl circuits status, which is important in MND and in mechanical failure because if your mechanical failure causes nerve compression, then no matter - you would have neurological symptomes. but they would be definitely local, related to one spinal node and clearly could be distinguished by certain set of signs from the damage caused purely by 'electrical' failures, whcih are MND.
We had just recently a lady fellow here (cant remember her nickname) who had stifness and pain in the shoulder and even had the shoulder crooked - and it appeared she had spinal stenosis! which of course is not ALS.

In mechanical failure massage, physiotherapy and maybe things like swimming are so helpful and could bring you a good relief. You should also remember that if a person has a slight trauma causing him or her to limp, with the time compensation may make things worse, and pain and stiffness may increase. but usually when the trauma or wrong muscle position is cured, people usually come back to normal conditions.

even if you would have cramps, please dont worry. we all have them.
UMN spasticity is different and usually it develops rather quickly and causes a real hell of pain. And people feel they hardly can flex the muscle, all the muscles are hard like... well... in one crime novel I read that the person poisoned with the tetanus was complaining that his jaws were like toffee and he barely could open a mouth... and tetanus is a spastic disease. it also involves significant change in reflexes. So I belive your doctor, even rheumathologist, could not miss that...
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Xina535 on March 10th, 2014, 2:42 pm

Yuliasir, you really are something else! :D Thanks so much for your time, always!

I read on here some posts about soreness vs. tension vs. spasticity and well, I'm having a freak out moment.

It's hard to understand by google searches what spasticity really is. I take it as, it is when your body contracts (so, an extreme musle spasm) and you can't really get it out of the spasm, so you have a deformity, and it hurts. I am not sure how reflexes play in this, unless not being able to get the muscles to straighten out again is the reflex issue. I believe with spasticity, this only happens with more serious neuro problems. And so if you have this happen (a spastic episode), then you have muscle spasticity.

I see tension not as the same thing as spasticity. I see it being where muscles are tight and sore. This can be caused by a gazillion things, and defintely from anxiety and stress.

Soreness can happen with tension, or it can happen from a pulled muscle or from hitting your muscle against something or from working out, etc.

I am not sure I am right with my understanding, but my concerns and why I am freaking out again is:

Can you have spasticity before weakness in (***)? Or should 'clinical' weakness already be present for this? Like, BFS twitching is different from *** twitching because in *** it is not usually widespread and it follows clinical weakness. So is that also the case with spasticity? My reflexes were tested by the neruo in Nov, and were normal, but could they have changed since then and I won't even know about it?

My left outer thigh has been hard and painful for a few months now. It is constant. Now, I seem to have the same problem in my butt muscle on my left side, but recently, my triceps/neck/shoulder muscles are also feeling tight and sore (both sides). I did not perform any exercises or anything, so I am concerned about this, what seems to be, a spreading of sore/tense muscles in my body. Is this what happens with spasticity, first sore/tense muscles all over and then a spastic episode will happen some time?

Blood tests from rheumatologist are not complete (waiting on ANA results - tomorrow), but so far it shows no inflammation. I am not sure if that is a good thing or bad thing with my symptoms and in relation to ***.
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby Xina535 on March 10th, 2014, 2:51 pm

wjjw wrote:For the record, if you're going to read this stuff and freak out, at least make sure you read it carefully. It says "in one of their arms or legs", not "throughout their body."



Bill, THANK YOU! I totally missed that key word! Maybe because just being on the page makes me so hyper and anxious. I don't think I can take this kind of therapy, where I should look up stuff to scare me on purpose, just so I can write it down. I mean, I know what reactions I have, I don't need to 'test' them.

I do have another example to write down though...My co-worker wrote last week to everyone that she was going to be out of the office today for her cousin's funeral. I wrote her back, giving her my sympathy (I did not ask what happened). She chose to write back and tell me he died of ***, after fighting it for 5 years.

Yea. I lost my mind. I'm a wreck!
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

Postby wjjw on March 10th, 2014, 4:56 pm

Xina535 wrote:I did not ask what happened

Good. Maybe there is hope for you. ;-)

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Website ALS.net and 'Sinfomed EMG-Diagnostic' Questions

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