Old 01-22-2018, 11:09 AM #1 (permalink)
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Default ALS or not

Hello,

I am a 44 yo male. I started to notice slurred speech in September of 2017. Shortly after, I was having difficulty opening water bottles and packages with my left hand. In November my fasiculations became constant in my left arm. My slurred speech became more prominent. In December, I noticed difficulty swallowing and drooling intermittently. My fasiculations spread across my shoulder blades and into my face. My weakness progressed so I couldn't button buttons and difficulty tying my shoes. Now in January, My kids are saying, "Daddy you slur your words all the time.". My fasiculations are now in my right arm, abdomen and left hamstring. I can't squeeze toothpaste nor open a bottle of water with my left hand. I have minimal movement in my left index finger. Two days ago I received constant spasms in my right ring finger. What a gift.

I have seen my PCP, ER doc, 2 neurologist. Have had every blood test I can imagine, CT scan, MRI, EMG, EKG, chest x-ray. And no diagnosis.

From all my reading and research ALS seems most likely. Do my symptoms resemble anyone's symptoms?

Thanks for reading.

Mitch1
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Old 01-22-2018, 11:57 AM #2 (permalink)
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Default Re: ALS or not

I recommend you seek another opinion from a neuromuscular disease specialist. Make sure they do EMG to test the bulbar muscles as well as the weakest hand. Best of luck.
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Old 01-22-2018, 09:37 PM #3 (permalink)
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Default Re: ALS or not

If you have not been, you might call the Henry Ford neuromuscular center in Detroit.

Best,
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Old 01-23-2018, 07:06 AM #4 (permalink)
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Default Re: ALS or not

Thank you Ladies,

I have been to Henry Ford's Neuro department. I have completed an extensive EMG testing to my extremities, hips/glutes, thoracic and tongue. I also have an appt. with another Neurologist, Dr. Newman in the same department. Unfortunately it isn't until Feb 7th (a month after seeing the last neurologist). The physicians I have seen have offered no explanation of the potential dx nor my test results.

I apologize if I sound like I am looking for a Dx from this forum. I understand that would be irresponsible. I have read the "sticky notes" and many other threads on this site. I also understand the odds are very low for someone to have ALS. My wife and I hope and pray we don't beat the odds.

We have researched and tracked my symptoms. I hope I am a poor researcher and missing something. I would love the Dx to be Kennedy's Disease or Isaac's Syndrome or another pathology mentioned in other posts. Realistically, it doesn't seem to me, to be the case. I was hoping to find someone with similar symptoms and progression who might steer me in a direction I have not looked.

Thank you for your time and ear.

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Old 01-23-2018, 07:28 AM #5 (permalink)
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Default Re: ALS or not

Having undiagnosed neurological symptoms such as yours is very difficult. I am sorry. I hope you get some answers from your next appointment.

If you have not yet done so reading your progress notes might give you some insight as to what they are thinking ( or not but worth a look). Did the last doctor refer you to the new one? Did they want to follow you?

If you don’t get an answer at least ask for a plan and an idea of what they are thinking? Do you need more tests? A different specialist? Or is it truly wait and see?
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Old 01-23-2018, 03:39 PM #6 (permalink)
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Default Re: ALS or not

I'm amazed so many people have ALS on their radar.... my diagnosis was such a shock to my wife & I... It was not even one of the diseases we were being tested for!
NPH
Chronic Inflammatory Demyelinating Polyradiculoneuropathy
Transverse myelitis
MECFS
Guillain-Barre syndrome
Lyme Disease
Zika Virus
Adult Polyglucosan Body Disease (APBD)
Lupus???
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Old 02-14-2018, 07:00 AM #7 (permalink)
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Default Re: ALS or not

Hello,

It has been some time since I first visited the site. I took the advice and retrieved my appointment records. I also saw Dr. Newman at Henry Ford Hospital on 1/30/18. I thank you for your advise.

Dr. Newman was exceptional. He spent 2 hours with my wife and me. We were preying that the my dx would be Kennedy's Disease or some other pathology to explain my symptoms. We were hoping we would leave the appointment with a course of treatment which would be direct and curing. Unfortunately, I was dx with ALS.

These past few weeks have been a whirlwind to say the least. So many thoughts and emotions. The toughest thing for me to deal with is the hurt, frustration and sadness my friends and family have due to the dx. Each of them hurt in different ways. Because the hurt is different for each of them, I am humbled to realize they also need to allowed to work through it in their unique way. Some have the need to spend time with you, some need to make donations to you or the cause, some want to create fundraisers, some need time to process and call weeks later. For me, I had to release my desire to control and accept their differences.

For anyone who believes they may have ALS, here is what was helpful to me. See your physician. Follow the process of referrals and testing. ALS is diagnosed through the process of elimination. Read....Educate yourself on possible diseases, pathology and experiences of others. Keep a detailed timeline of your symptoms. Each step of the way gather test results and physician appointment notes. And if you receive the dx of ALS, accept help.

Thank you for listening.
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Old 02-14-2018, 07:08 AM #8 (permalink)
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Default Re: ALS or not

Hi Mitch,

I'm so sorry to hear of your diagnosis. Please know that you will have much support from plenty of wonderful people here.

Thinking of you and your family.

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Old 02-14-2018, 07:14 AM #9 (permalink)
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Default Re: ALS or not

I am sorry to hear this too. Wishing you a slow progression and many happy moments on this journey.

As Bestfriend says you will be welcome on the regular forum. If your wife cares to join she is welcome as well.
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Old 02-14-2018, 11:33 AM #10 (permalink)
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Default Re: ALS or not

Dear Mitch,

I was suspicious when I read your initial post. Iím sorry ALS was confirmed. Youíre in good company here, though. Lots of support and information on this forum to help you. Best of luck on your journey and keep on living as best you can.
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Old 02-14-2018, 02:30 PM #11 (permalink)
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Sorry, Mitch. But welcome.
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Old 02-14-2018, 02:57 PM #12 (permalink)
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Sorry to hear this, Mitch. This is a supportive community with lots of good info.
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Old 02-14-2018, 04:05 PM #13 (permalink)
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Default Re: ALS or not

Very sorry to hear of your dx, Mitch. We'll support you however we can. Thank you for sharing some good advice, as well.

Best,
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Old 02-14-2018, 04:54 PM #14 (permalink)
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Dear Mitch,
I'm so sorry to hear you were diagnosed. Please feel free to post in any of the forums. It sounds like you have a lot of support.
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