Diagnosing ALS

[island]

Why does it take so long to diagnose some people with ALS and so short for others?
Why are some people allready in wheelhairs when they are diagnosed and others still claiming mountains? Why does the EMG show evidents of damage in the muscles so late for some people and very early for some, sometimes even before feeling that there is a problem in these muscles, and why even some people completely paralised and die with only a probable diagnose of ALS? I know nobody here is a doctor,but a feedback would be welcome
Best wishes to you all
Hronn

 

[notme]

ALS seems to progress very differently in everyone. Some are diagnosed quickly because the doctors are able to find the LMN and UMN signs at the same time--then quickly rule out other causes.

Some begin with only UMN signs--the brisk reflexes, spasticity, etc--no LMN--and it can take longer to diagnose them because the diagnosis needs both UMN and LMN usually (though some are diagnosed with LMN or UMN dominant, as I understand it)

Some people go to the doctor when they first notice an area of weakness--the usually first presenting sign. An area that gets progressively weaker and eventually paralyzed and atrophied. By the time that happens, there is little doubt on the EMG/NCV--after other things are ruled out.

The tests are only as good as the doctors giving them, too. Some doctors likely work their entire career and never see a case of ALS--and there are several things that can mimic it in the early stages.

Those that are in wheelchairs before diagnosis may have only displayed UMN signs--such as PLS--and only very late in the course developed any LMN signs detected on EMG.

The majority of cases of ALS begin with limb onset--some, though, are bulbar onset. which would make the doctors more concerned with finding a diagnosis--choking hazards and inability to eat are serious complications. Slurring speech is usually first--and even then, the person might just think they're tired--and wait til the slurring is all the time before going to the doctor.

Lots of things play into discovering the cause of the symptoms. MRIs, EMG/NCV, blood work are just the beginning.

The EMG/NCV may be clear in someone presenting mostly UMN signs--or the EMG may not be definitive when other things are going on within the muscles and nerves--such as trapped nerves.

Does that help?

 

[CoachMeg]

I think that part of it too, is that ALS acts differently in everyone. Whether it starts in your limbs or if you have bulbar onset. Your general health at the beginning or onset I think has something to do with it also. The knowledge of your doctors and how well they work with each other. The success or failure of your health insurance to honor requests for additional testing. = all of these things contribute to how soon you are diagnosed. And of course, there are the many, many unknowns.

Trust me when I say I wish we had the answers. We all have so many questions. I realize I probably didn't add much insight. Sorry!
Love and light
Meg

 

[kmendsley]

Like stated above...everyone is different. With this being said, many people are different as well in how they are in tune and know their bodies. For example, I was a dancer and the day I woke up after 20 years of learning and knowing the limits of my body...I fell doing a simple turn I knew something was wrong. My balance up to that point had been perfect in how I knew it and doing 3-4 turns in a row were not a problem. For me not being able to do one turn without losing balance...well lots of red flags went up from there. If you are not as in tune with your body, or you shrug off weaknesses/tiredness/short of breath because of stress or just working hard, people and doctors fo that matter, can go years without noticing symptoms in themselves or their patients.
Health insurance is another issue. I noticed my problem pretty fast, but for all the tests to get done and for insurance to approve them. Well let's just say I was FINALLY diagnosed in April of this year. I noticed my first loss of balance in Nov. of 2009. Almost 2 years later.
Hope this helps....mostly it does though come to each individual person their physical status, mental, and emotional status to how fast something progresses.
-Kell Bell

 

[Alyoop]

Ditto to everything said above. The other issue comes down to the individual neurologist. There is a scale called El Escorial criteria. Some neurologist stick to the narrow criteria like glue. If a patient does not fit the scale from possible to definite ALS, then they will not diagnose it. Some people with obvious ALS, never meet the criteria, even after passing away from it.
Recently an undisguised ALS patient at our local hospital was dying in ICU. His neurologist would still not say, that the patient had ALS because a tick was missing in the appropriate "box". That's just plain narrow mindedness.

Some neurologists are a little more sensible and can look out side the box.

So a lot comes down to the neurologist. Shouldn't be that way, but they are only human. ( mostly)

Aly

 

[island]

Thank you all for your feedback, you are all a very nice people here. Like a little family. My doctor says that I fit most of the things in the ALS box, The weakness, atropy,brisk reflexess,and muscle twiches even in my tounge, but the only thing that don´t fit is a clean EMG/NVC. So we have to wait and see he says, I´m just so afraid that this is something that they can fix and it will be to late to revearse the damage. I had a clean MRI as well. Cpk normal,the only thing that I could see on the bunch of bloodtest done, where not normal colestrol HDL and LDL,what ever that means,and clean Lyme test to. I know my body well and have never had any health promblems and no, I´m not crazy. I´m a 37 year old female,married with 3 children. I can not run anymore, my left foot will not move as fast as the right one, and I can not lift up my daughter from the floor anymore.
My husband does not want to hear about any sickness,tells me to go to the gim and get my muscles working. So I guess that this is the only plays that I can share my fears.
Thank you for listening

 

[kmendsley]

"Hronn" Sorry to hear that your fam. is not onboard with you. Mine is not there either. I do have a couple of friends at least by me that 'get it' and help me wherever they can...but it is hard when your own fam., the people who are supposed to support you when you are down are mysteriously not there. I have been told by many people that maybe just my family 'loves' me so much that they can't bear to even think about me having such a disease and choose to live in denial. Well this is just fine for them, but frankly... it sucks for me! I'm not living in denial...I am living horrible truth that my body is detoriating and have to figure out new ways to get around since it will prob. take me falling on my face and not being able to get back up for my family to agree I need assistance....even then who knows...I have been told that I need to 'exercise more', drink more gatorade, and water and I would be fine by my mother and my brother. Disheartening to say the least. This is a great place for support and know I am here for you too.