Too afraid of EMG to take it...

[Marco Polo]

Without going into the symptom details yet, I'm 56 year old male and from visit to neuro and lots of reading on aboutbfs forum and this forum, as of today I'm 95 percent convinced I have ALS. Reason I'm posting is to find out if there really is any rush to persure futher medical attention, other than for peace of mind in the tiny chance the EMG results are clean ?

In other words, for the moment I'd have more peace of mind not knowing the EMG results....as that 5 percent uncertainty gives me some hope. But I do wonder about the remote possiblties the leg weakness, asymetrical tongue and relentless twitching all over could be due to a brain tumor or such that would have some possiblity of cure and thus I really show go ahead with EMG soon on that basis alone ?

I guess the bottom line is, are there any stories here of folks that had confirmed muscle atrophy combined with other classic ALS symptoms that had their muscle deterioation stopped when a cause other than ALS was found and dealt with ?

 

[tag0620]

My husband was diagnosed with limb onset als in November '08 after clinical exams and two emg's showed active denvervation in his lumbo sacral AND thoracic paraspinal muscles...along with drop foot, weakness muscle atrophy, spasticity, brisk reflexes, fasciculations, etc in his lower body.

Guess what....

We go in for surgery in 1 week and 6 days...because we kept insisting they keep looking...and it turns out he has a herniated disc at T6/T7 (his thoracic spine) that they now believe is causing all of his issues.

We SOOOO understand your fear of that emg...my husband didn't want to go for another one...but my perspective was that we needed to know no matter what. We needed to plan, we needed to prepare and inform ourselves and be around people who could help us rather than not being ready when the disease really started to hit and then we'd be in a panic.

The moral of OUR story is...the emg is not the end all be all to diagnose this disease. We had something else that was causing our denervation...we had to fight to prove it...but that emg did NOT mean we had als after all. This may not be the case with everyone...but I felt the need to be as informed as possible (even if it meant Jim had als) and because of that, we were armed to make an intelligent search and found something that can in fact (we hope) be fixed.

Even after that emg I was insisting on lumbar punctures, more mri's, myelograms, muscle biopsies, etc, etc...dang it...they were not going to do this to us until they had exhausted all testing! Thank goodness we didn't need all of it.

If we had buried our head in the sand...my husband would have been a lifelong paraplegic. In other cases (you sited a "possible tumor"), it could un-necessarily end your life anyway..which would be a shame if it's something that could be fixed or treated.

Be your own advocate (no matter the outcome)...and I pray for an outcome other than als for you!
Tracy

 

[Sybil]

I feel I must post as I have recently had an EMG test and was told the results were inconclusive and abnormal. I have had MRIs (3) , CAT scan , and other tests. Like the post above I am 90 percent sure I have ALS but the doctors have not told me my DX. All of my symptoms have ocurred very rapidly. ( in last three months). I am unable to walk without a walker, fall frequently, drop foot, useless legs, speech slurred and slow, some swallowing problems. Can I still have hope or do I resign myself to ALS?

 

[BethU]

Sybil ... please don't "resign yourself" to ALS until your doctor reaches a conclusion. If you meet all the criteria for ALS, your doctor will inform you. The fact that he hasn't said so indicates that he is not satisfied that you have it ... and he may not have even finished his tests.

These are really complicated conditions. Many of the blood tests for "mimic diseases" are uncommon ... they may take special labs to process, so neurologists may not order them until they have ruled out easier things to diagnose. (It took me a month and a half and three blood draws to get the correct results for one single test for Myasthenia Gravis.)

So: Please keep your hopes up! Take the best care of your health that you can while you wait out the diagnostic process. And whatever it turns out to be ... don't resign yourself! I believe that actively fighting the disease ... that is, participating in support groups, using the best technologies, equipment, medications available that are within your comfort zone .... helps prolong your survival, and even better, improves your quality of life.

Take care.

 

[Moonmark]

Hi Marco Polo and Sybil,

MP, I understand the urge to not have the EMG done. I am also undergoing a battery of tests for progressive muscle weakness, twitching, atrophy, some pain, and profound fatigue. I have also had some other symptoms that people here (who definitely are in the know!) do not think are consistent with ALS, so I am still holding out hope for something else. I saw one neuro a month ago who said he did not think it is ALS, but could not be completely sure and ordered an EMG, which I will have in a few weeks. After extensive reading about various neuro problems online, I too find it hard to believe that my symptoms do not ultimately point to ALS. It seems that the weakness, followed by the twitching, and then the beginnings of atrophy (in my case, the left hand, wrist, and forearm) points to that. but we are not doctors and, like many have said here, there could be other possibilities. If it is ALS, or even something else that is quite serious, you cannot run and hide. it will eventually get worse and it seems that you probably will want to have certain aspects of your life in place-- utilizing disability insurance (for which you will need a diagnosis), getting wheelchairs, walkers, etc. through your health insurance, and any medications that might help to alleviate some of the symptoms. I don't know much about all this, but other people here do. I too would love to bury my head in the sand and every morning I wake up and hope this will be gone, but it isn't going anywhere.

Sybil, it astounds me that you could already have such disability and yet the EMG does not point conclusively to ALS or something else. How can that be? do you still have to have other tests done? are you being seen by a neuromuscular specialist? There is a fellow here named Wright who seems very knowledgeable about EMG results. maybe you could post the actual wording from your test results and people might have some idea of what it is pointing to.

anyway, I hope none of us has this horrible disease. Good luck to you both.

Sandra

 

[Lorie]

Keep Persuing

Keep persuing the Doctor until you are satisfied with a definite DX no matter what it is. If it is not ALS, CELEBRATE! Don't dwell on it. I will have my third EMG in three years next week. During the EMG just bite your tongue and kick the Neuro. Thats what I did the last time!


Lorie

 

[AndyDJX]

Marco-- If 95% of your brain is convinced you have ALS, you're not in good mental shape anyway. That 5% isn't doing much good, you might as well get the EMG. If it comes back clean it will do a world of good for your state of mind. And if it doesn't, and I pray for you that it won't, you will be able to proceed with your doctors.

I just went to see a hand specialist to check out my thenar atrophy and intermittent pinkie weakness. He didn't even see me for more than 30 seconds; he just ordered an EMG. It's the logical step. I don't even think he's looking for ALS, more nerve compression, neuropathy stuff, but of course I'm worried about it because of all my other symptoms.

Good luck

 

[laurel]

Hi Marco,
Yes, I have a story that demonstrates the need for testing. Hubby had wasting of the thenar muscle and forearm muscles. He saw a neurologist who did not specialize in neuromuscular disorders and was diagnosed with Carpal Tunnel and was referred for surgery. Surgery did nothing and profound wasting/weakness happened. Finally was referred to a neuromuscular disorder unit and had testing including MRI's, lumbar puncture, EMG, and nerve conduction. He had a query of ALS in his differential diagnoses. He responded well to treatment which is IVIG monthly. He has had very little in the way of sensory symptoms ever. Mostly weakness, atrophy, and fasciculations. Go for the testing. If hubby had seen a neuromuscular disease unit in the beginning he would not have the permanent damage that he has now, but at least further damage has been prevented. He was developing drop foot just prior to his first treatment of IVIG and he has much less damage in that foot than if he had not started the IVIG. I am a retired nurse and was almost sure my husband had ALS too. So get in for testing with a neuromuscular disease neurologist ASAP. Good luck.
Laurel

 

[hopingforcure]

Please get the emg, you may have something treatable, look at tag, Laurel, they have stories that show persistance. If it is ALS, well then you can plan an attack, you can plan future changes, get disability, make decisions etc...
If you are convinced you have ALS, who know's you may not.
If I had a nickel for everyone who has thought they had als and didnt.. Wow I would have a lot of nickels... Get the emg..

 

[Zaphoon]

Folks, for Pete's sake, the EMG is no big deal. I find them relaxing and enjoyable. Odds are, anyway, you may not even have ALS and the EMG can also lead the doctors in many other directions.

Why would you cheat yourself and the doctors from access to such a useful diagnostic tool?

I can hardly wait for my next EMG.

Zaphoon

 

[BethU]

Sandra ... you wrote it astounds me that you could already have such disability and yet the EMG does not point conclusively to ALS or something else. How can that be? do you still have to have other tests done?

EMGs never point conclusively to ALS. You cannot, for instance, distinguish between MG and ALS on the basis of an EMG. They could show identical results. A patient must have a number of specific signs/symptoms for a diagnosed of ALS to be made. There is a sticky on this forum explaining EXACTLY what a doctor must find in order to make a diagnosis of ALS. If anyone is seriously seeking informed information about ALS, that is the place to start.

It really, really takes a medical education to begin to understand the implications of these tests and symptoms. We are none of us (except for our nurses and Wright) qualified to second guess doctors. This doesn't stop any of us from doing so, but the fact remains ... we are not qualified. If anyone thinks they have ALS, for heaven's sake, see a doctor and, like Zaphoon, spend a little quality time with an EMG.

 

[Judith]

MP,
By not having an EMG will not change the outcome. Personally, I would want to know whether I have it or not. Then I would have peace and would deal with it. Not knowing would not be peaceful to me, it would constantly be hounding me until I knew.
Some people don't like the EMG test, but I don't have any problem with it at all. I've had 3 so far.

 

[Sammantha]

tag0620


I do not for the life of me understand why they dont do a whole MRI of your spine before diagnosing anything! Why do they only do brain and cervical? It makes no sense... I am glad you had the results you have.. Sam

 

[tag0620]

Sammantha...they DID do the whole spine (lumbar, thoracic, cervical) and brain..and 5 doctors completely dismissed this herniation in favor of the als diagnosis for 7 months. WE just knew that his symptoms started with his ski accident, we knew that all symptoms other than some fasciculations had stayed below the level of the herniation for over two years, and in researching this herniation and talking with two other people on a spinal board who had similar herniations (one was diagnosed with and treated for MS for two years before they found his)...we really felt the doctors were wrong. It took fighting to find one that would listen to us.

Reading the information on the El Escorial that's listed on the site showed me that we should have never been diagnosed!

We had our limit. If any symptoms of weakness or atrophy or function loss passed up to his upper limbs or his face/throat/etc (areas that in his case wouldn't be impacted by OUR "other" options..this doesn't mean that if someone has symptoms in those areas then they have als...it's very individual...this was just OUR limit)...we were ready to accept our diagnosis...but in the meantime...we were hell bent to prove them wrong before permanent damage was done to the legs (which we won't really know until after the surgery).

That's why I don't understand these 90-95% sure I have als comments when there is still testing to be done or test results are inconclusive. If you resign yourself and give up...what chance do you have of living the rest of your life with gusto (no matter if it's 30-40 years...or the standard "2-5 years" you get with "the talk"). Plan to have something else until there is nothing else to be had..and then if that's the case..KNOW you did your best and live with pride!

If you can't tell...I've become very passionate about being your own advocate! lol!

Tracy

 

[BethU]

Mistakes Were Made

It turns out that I posted some incorrect information recently regarding EMGs and diagnoses. Fortunately, I am a big fan of American politicians, so I know exactly how to frame an apology.

Mistakes were made in some of my recent posts. Turns out the results of an EMG can too distinguish between MG and ALS.

I have no idea how these mistakes were made, or by whom, or how they managed to get into messages posted under my name and avatar, but I accept full and complete responsibility for creating the name and avatar.

... And that's not all ! I would like to personally apologize to anyone on the planet who was dumb enough to believe that I meant what I posted! And I mean that very sincerely, from the bottom of my heart and the top of my liver. You may quote me, above the fold if possible.