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JLRNL

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Joined
Apr 2, 2012
Messages
50
Reason
PALS
Diagnosis
09/2011
Country
US
State
Utah
City
Hurricane
I started exhibiting signs ans symptoms of ALS about 18 months ago. Since then my symtoms and signs have continued to worsen. The following has been accomplished:

Clinical exam showing upper and lower signs of ALS.
EMG showing minmal abnormal study, also ruling out other disease.
NCV showing no other disease leaving only ALS.
Physical Therapy Evaluation showing weakness in lower extremities and left side in agreement with diagnosed of prob. ALS.
Speech Therapy assessment showing positive with a diagnosed of ALS.
Lung Function Study showing a positive reduction in agreement with diagnosed of ALS.
MRI showing no cranial or spinal abnormalities for other possible diagnosis leaving only ALS.

Yet the neurologist is not willing to give a definite diagnosed of ALS due to the EMG report being only minimally abnormal. Yet all other testing is positive. I'm now on c-pap and they want to strt me with b-pap.

I have gone from being independent, to using a cane to a walker and electric scooter and I continue to get weaker no longer to walk long distances or stairs.

Has anyone else had this and what was done about it. I have a disability claim pending on the diagnosed being definite and not probable

Thanks, JLRNL
 
There are many neurologists who hold back on giving the ALS diagnosis unless every single doubt has gone from their mind. Clearly your doctor still holds doubt because of the EMG result. it can cause immense frustration for a patient and their family. I am sure that's how you are feeling.

ALS just does not always present the same for all people. I know a neurologist who refuses to give an ALS diagnosis unless every box is ticked. It drives the nurses crazy. In fact some have left because of the frustration and upset they feel for the sufferer.
There are plenty of doctors with the opposite problem, they mention possible ALS at the beginning of the diagnostic process, causing all sorts of panic, often unnecessarily.
If you could go and get a second opinion it may help. That way if you get the same situation happening again, then there is hope that it could be caused by something else.
 
I have been seen by 6 neurologists they all lean towards giving me the definite diagnosed, yet this emg is holding them all. That being said 3 of them have been in their last year of residency and the others are attending. They are all associated with the VA medical center. A second opinion will not be benificial due to the fact the disability claim still needs to go through the VA system. My original neurologist in the Netherlands gave a definite diagnosed, they rejected it.

Last week the gave me my third emg, I stopped it due to the physician throwing my muscles into extreme cramping and pain that lasted for 3 days. So the emg was inconclusive. I will not allow another one, due to this one being so painful. The VA uses the El Escorial Criteria that also states that EMG results are very operator sensitive and results from EL Escorial including the revised criteria is not very accurate. I spoke to the neurologist about it they just became upset that I would question his medical expertise.

Also when I wrote about all the other professionals testing and coming up with als, it is in their written reports their own word not mine.

I find it interesting that the VA calls this a ALS Team, yet only one part of the team has truly a say in the diagnosed. Yes...FRUSTRATION!
 
You are certainly in a sticky situation. The el escorial criteria, sometimes causes more problems than it was meant to prevent.

Sorry that you had problems with the EMG. It must have been awful.

Wish I could be of some help. Interesting that you have discovered that a neurologist with a bruised ego is a frightening thing :) . I found that one out rather abruptly as well.
 
I had three separate diagnosis of ALS. I kept hoping for another diagnosis. I suggest getting another opinion from another neurologist that has experience with ALS. Good luck to you! I know it's scary and frustrating!
 
Re: When is testing enough for diagnosis?

Have you thought about trying a different VA medical center do a workup on you? And getting any neurologist, much less a VA neurologist, to sign off on a definite ALS diagnosis. Given what's at stake for you, an EMG at at a different VA center with a different EMG operator might be what you have to go for unless you are willing to wait in an undiagnosed state long enough for meeting purely clinical signs of both UMN and LMN signs in three of the four regions of your spine.

If you search around this site, there are some helpful hints posted about navigating the VA process. Refusing procedures that the VA doctors require isn't high on the list of recommendations. You didn't think that a 100 percent disability rating was going to be a bowl of cherries, did you?

By the way, what were the results of your first two EMGs and who performed them?
 
You have obviously done your homework and educated yourself. Bravo. Unfortunately as you have learned the El Escorial criteria and to a lesser extent the awaji criteria is the gold standard without a true positive / negative test out there. You said your EMG showed minimal abnormal findings...what were they? Did they find denervation and if so, in which muscles. I know that EMG's are not fun and uncomfortable but ultimately to be diagnosed you will need to have another one.

I am not familiar with the VA process. Is it possible to go to an ALS clinic for diagnosis and then the VA for confirmation. Perhaps with diagnosis already in hand the VA would be more likely to provide you a diagnosis as well?
 
My FIL was military and he never used the VA for anything other than his prescriptions. I'm not saying they are a lower grade of medical personnel, he just felt more comfortable with civilian doctors. So as mentioned above, go outside the VA.

I'm not military, but went to 3 doctors trying to DISprove their ALS diagnosis. Wasted a lot of time, money and energy only to come to the same conclusion.

Good Luck to you.
 
We just received 100% service-related disability confirmation for my Dad from the VA in March. The diagnosis we submitted with the paperwork to the VA was from an ALS clinic, not his VA hospital or doctor. The paperwork was processed in just about a month. Good luck - I hope it's not ALS.
 
Re: When is testing enough for diagnosis?

I have had three emg's done by three different physicians, including the VA. The VA system has been good for me so far and the medical care far better than what I have here in the Netherlands.

The emg did show lower denevation on the right side, with some indications of upper. Clinically UMN and LMN have been documented several times.

100% rating is a presumtive process, I am already rated as disabled from Military service during the vietnam era. They corrected the problem through surgery in 1980 and then removed my 100% rating, giving me a non financial compensational service connected disability rating. This means I will always have priority medical care.

One interesting thing is that the neurologist that first informed me of the probable ALS diagnosed at the VA was known as the ALS guru at Washington State University, the week after, he relocated to a private practice in the mid-west.
 
As you say, you've had three EMGs. Do they agree, disregarding progression artifacts in the later EMGs, on their findings? When you say, "The emg did show lower denevation on the right side, with some indications of upper. Clinically UMN and LMN have been documented several times," what symptoms are you referring to?
 
hpw about this one: in the beginning of all the testing the good Dr. ruled out ALS, and I was soooooo relieved, sure didn't want that "death sentence". thought it was MND but it didn't respond whatsoever to the IVIG as it should have if the diagnosed was correct. the end diagnosis was ALS.
 
To trfogy I will get those finding for your about my emg. I need to muddle through all my pages.


I do have a question for anyone that is using riluzol. They started me on 50 mg twice a day normal dosing I have been using it for 1 year now. My question is has anyone using it noticed a reduction in symptoms or of testing outcomes. For example changes from one neurological exam to the other? Please let me know. Thanks.
 
My clinical exam shows UMN and LMN signs--but the EMG doesn't show enough wrong for ALS--sounds like you're in the same boat. Something else is likely the culprit for the issues perhaps?

Good luck in finding the answers. I've given up trying. What will be will be.
 
I do not know anyone on Rilutek (Rilluzole) who has seen changes from one appt to the next...I do not even believe that the trials produced results like that on the mice and rats let along on humans, the efficacy of the drug is to slightly slow the progression.
 
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