Is it possible this is NOT ALS?

[Blubear]

My father was diagnosed with ALS a month ago. He was having facial droop, slurred speach at times, and when he went for his walks every morning he could no longer walk up hill without walking backwards. He was also recently diagnosed with severe sleep apnea. He is 69 and until these past 6 months has been in excellent health. He had an EMG prior to his diagnosed and that is what led them to ALS. He recently has tested normal for metals, and normal for his IGM. He does however have a cyst on his kidney that is inflamed and urine is backing up into his kidneys. I know that the kidneys have nothing to do with ALS, but the other tests being normal (well not the emg) makes me hopeful that maybe this is something else? Have any of you tested normal for the metals and had a normal IGM test? Within the past week his hands have shown signs of weakness as well. He and my mother are happy with their neurologist, and dont think its time yet to go to the ALS clinic in Seattle. Is it too soon? Should he have his levels of proteins tested to be sure of ALS?
I am so scared this may be something else and we are not addressing it. Of course I am in the denial stage. Please help me!

 

[BarryG]

Bluebear, I am very sorry about your father's diagnosis. I know it is hard to accept but a diagnosis of ALS is usually correct if it is made by a neurologist who is experienced with the disease.

I would recommend the ALS clinic because of the added benefits that the dietitians, respiratory technologists, speech language pathologists, physiotherapists, social workers, etc can offer. The doctors are great but they are only doctors and we PALS need much more help than any one doctor can offer. Your dad may also be able to get help with his sleep apnea so he has more energy. And the doctors at the ALS clinic can also give you a second opinion even if they only review the tests that have only been done.

All the best to you and your family, I hope that he can get some help to make him more comfortable.

 

[Blubear]

Barry, thank you so much for answering so quickly. As you must know I would do ANYTHING for this not to be ALS. I have spent hours upon hours studying this disease. The metals test coming back normal was surprising to me, as was the IGM test. The doc that he has specializes in MS. I read that you need a test of 3 protein markers which are TTR, cystatin C and the carboxyl-terminal fragment of neuroendocrine protein 7b2, that should be at low levels to get a 95% accurate result of having ALS. It was through the beginning process of having an MRI that we found out about the kidney problems. Kidney problems can create all over body weakness and a lot of the same symptoms as ALS. I just dont know if we are now dealing with 2 problems instead of one. So, the EMG is the way you confirm ALS for sure?

Hugs for your response!

 

[BarryG]

Bluebear, unfortunately ALS is a diagnosis made by ruling out everything else that it could possibly be. The EMG is really the only test that can be done that is in any way conclusive and even then the diagnosis is not solely based on it.

My first symptom was occasional slurred speech in July of 2007 and a couple of months after that I had my first EMG which showed that something was wrong with my right arm and left leg even though I had no limb symptoms at all then. Now over two years later I can't talk, can't eat and my right arm/hand and left leg are starting to go their own way

I am not familiar with the blood tests that you mention, I know that I had a bunch of blood tests done but I understood that they were to rule out other conditions, not to confirm ALS.

I know that there are others here with more technical knowledge than I and I am sure you will get other responses to your questions.

Welcome to the forum,
Barry

 

[halfin]

Hi Blubear, I am very sorry about your father's diagnosis and I know well how hard it can be to deal with - that tightrope walk between acceptance and uncertainty. Since the neurologist specializes in MS I would certainly encourage your parents to get a second opinion from a doctor who specializes in ALS. You might point them at this article from the ALS Association which discusses the importance of a second opinion on an ALS diagnosis: 2nd Opinion FAQs - The ALS Association

As you said, you don't want to waste time in case it does turn out to be something else. And if the diagnosis is confirmed, that can help you to put the uncertainty behind you and begin to grapple with the changes ahead. It takes time to accept such a shocking change as this, but getting an authoritative evaluation by an expert in the disease is an important step. I hope you have good news from that, but even if not, keep in mind that this forum has many resources and supportive people who can help you through the hard times.

 

[Katie C]

Just going to confirm what Barry said.... ALS is primarily diagnosed by ruling out everything else. So all those other tests coming back negative, and a positive EMG sure sounds to me like they've most likely made the correct diagnosed. I'm so sorry.

 

[BethU]

Blubear ... as to being too soon to go to an ALS clinic, I'd suggest they look into it now. It can take months to get an appointment, and some treatments are more effective the earlier they're started, such as Rilutek and even BiPap. I resisted a BiPap (sleeping device) for six months, then learned that indeed, the earlier you start, the more benefit you get.

If there are any lingering doubts (which I myself had for months after my diagnosed), an ALS clinic will address them.

There are many, many treatments and devices that help improve the quality of life with ALS, improve functioning, and also (I believe) extend survival. It pays off to actively fight this disease with every tool available.

 

[Blubear]

Thank you all for your kind responses. My father has been doing well since he has been on the breathing machine for his sleep apnea. My mom said tonight that his hand was just seemingly weak due to the weather change, and that he is doing better now. I am having lunch with her tomorrow and will again suggest to at least try and make an appt. with the ALS clinic in Seattle. She did also say tonight that my dad admitted to having muscle twitches for the past 4-5 years and she is convinced that it is ALS and he has a slow progression of the disease. The EMG that he had last month that gave his doc the confirmation showed a system wide problem. I am hoping that it is a problem with his kidneys and sleep apnea. I know that breathing becomes a major problem with ALS patients, but is sleep apnea?
Hugs to you all for talking to me!