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WeirdTim

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Greetings,

First I want to say “thank you” to all of you past and present that have posted on this forum. Although I’ve only been a member for a few months now, the information and encouragement you all have provided has helped.

Was diagnosed April 15, 2017 with ALS. The below is the story leading up to it all.

Before September of 2015, I wasn’t in the best of shape, didn’t exercise but wasn’t a regular smoker and didn’t drink. Above weight for my age/height. Coming home from work one night on my motorcycle, I was side swiped by someone doing a u-turn. Received my third concussion in six years and was transported to the hospital. Was wearing a very good helmet and full gear. The left side of my body from the waist down was sandwiched between my bike and the car that hit me, then as the car merged I went over the handlebars at around 20 MPH landing on my stomach. I remember waking up at the scene on the ground, but don’t remember anything after that until I was in the ER and my family standing there looking at me. No broken bones, but lots of pain. Headache, left shoulder pain, left knee pain, left ankle pain, neck pain. The did basic x-rays and found nothing so I was released to my family.

Starting immediately after the accident (within minutes/hours):

- Choking sensation/restricted feeling of airway
- Severe neck pain
- Lack of energy
- Lower back pain
- Left shoulder pain
- Dizzy/lightheaded/unbalanced
- No appetite
- Woke up a few times while sleeping

After a few months I was diagnosed with a torn labrum in my left shoulder, although not bad enough for surgery just a steroid shot. The shot helped for a year.

January of 2016 my eye lid started to twitch occasionally and not lasting for more than a few seconds, then wouldn’t twitch for several more days. The restricted feeling in my airway is still there sometimes but if I wiggle my voice box with my hand it goes away. Can chew and swallow just fine. Still, no energy. Get up in the morning, go to work, come home from work, go upstairs and sleep for a few hours, wake up, eat dinner and go back up and sleep again until morning. On the weekends I’d sleep all day, or try to. Had zero energy and felt like I was losing strength. Wasn’t the most active person but I’d work in my shop before the accident and afterwards all I did was lay down. Heck the lawn got mowed maybe three times in 2016 and each time it took me two or three days to do it. Lucky we don’t live in town. Still waking up several times a night and have almost zero energy at work. As this is happening, my voice is getting softer and more horse. Would walk across the parking lot at work and would be exhausted and totally out of breath. Also, my hand/thumb would shake sometimes when not in use. When I went over the handlebars, my thumbs hooked on the bars and they were stretched out pretty good.

Now I’ve been seeing my primary doctor the entire time and relaying symptoms and issues to them via MyChart. I saved all my emails to and from the doctors since the accident.

July of 2016 I was down to 220 pounds from 245 pounds at the time of the accident. Noticing some muscle twitching in my biceps and some in my upper legs. Again, not continuous or all the time, with pauses of several minutes and even hours in between. The twitches still only last maybe a second or two. Still very short of breath. Asked my primary doctor to take an MRI of my neck because the pain was terrible. Couldn’t keep my head up throughout the day. Was told that it was whiplash and it would heal on its own, denied the MRI.

In October of 2016 I was able to see a Neuro-Psych to see how the concussion has and will affect me. It was grueling. It took about four hours and I received three, ten minute breaks. Every time I got up for a break, I would tip into the wall as my mind was that exhausted. The results came back and I had some cognitive issues but they wanted me to do a sleep study and see a neurologist. The neurology department of XXX hospital refused to see me as they said there was nothing neurological about my condition based upon my chart. My primary doctor refused to fight for me.

In December of 2016 I had my first sleep study done as my sleep patterns remained the same as they were shortly after the accident in October of 2015. Sleep study results were 60% during sleep and was stopping breathing 124 times per hour. Two more sleep studies followed by the end of the year. Pulmonary doctor ran several tests and blood work. Told me that I had obstructive sleep apnea, but then changed his mind to the other kind of sleep apnea. He then changed his mind again to a paralyzed diaphragm. But within a few days he came to the conclusion that he didn’t know what was causing it. So he prescribed a BiPap machine and in three weeks it was delivered.


Anyways, in March of 2017 my primary sent me to a ear/nose/throat doc to see what is going on with my voice. They stuck a camera up my nose and down my throat. Discovered that the two flaps over my vocal chords were acting oddly. The left one didn’t move much and would have a tremor when it did try to move. They had no good reason why it’s happening and sent me to a neurologist.

Once I started using the BiPap machine on 1-15-17, my life started to turn around slowly. People commented in March of 2017 that my color is returning, I’m not so pale. My energy levels started to come back and overall just started feeling better. Could sleep easily for nine or so hours without waking up, great stuff! The only thing that really didn’t change is my voice became harsher and harsher and the twitches continued. Again, the twitches weren’t in the same place for even ten seconds, just a second and they were gone.

Within a few days of the neurologist appointment I found a leak on my BiPap hose near the machine. I couldn’t hear it at night so I didn’t know it was there. Ordered a new hose.

When the neurologist saw me in the beginning of April of 2017, she put me through some basic tests like reaction, feeling, balance. I was still not in the greatest of shape after being deprived of O2. She ordered some blood work and an EMG with another neurologist. These people were all very nice and professional. In a few weeks I went and had the EMG done. We got home that afternoon and in an hour I received a call from the neurologist and she said “sorry I have to tell you this but you have ALS. Are you ok?” It was really that blunt, although I wasn’t happy on the presentation of the message…..not sure if there is a way to present that news that isn’t blunt. Anyways, I lost it. So weird because after I got the BiPap machine I started to actually feel better almost every day. Friday I sat around the house and wept. Then Saturday I became angry after reading some posts on this forum and others. I’m strong. I’ve got no muscle weakness. The neurologist told me that the muscles in my neck are weak and that’s what’s causing the pain. Can’t be! I go to a chiropractor and he tweaks my neck and I have no pain for a few days. Plus, as I told the neurologist I’ve had arthritis since I was nine or ten years old (BTW, I told my primary this and neither of them ever recorded it on my charts). Saturday afternoon I walked out to my shop, rolled out a kick start only motorcycle that hadn’t ran in almost a year, jumped on it and kicked it just as hard as I used to. It fired and I went for a few mile ride. Felt awesome and I felt no different than I did before the accident. Upon my return, I was on a mission to prove very smart people wrong.

Was diagnosed on that Thursday, emailed my work and took off the next day and Monday and Tuesday the following week. The neurologist who did the EMG test wanted to see me on Tuesday for a follow up. My parents and girlfriend came along with me for support and to make sure I was asking questions. Met with the neurologist and he had a student with him. When I presented my case on why he was wrong, he opened up a book and started showing us why I have ALS. He said my neck and breathing are conditions that make the most sense along with the EMG test he did a few days prior. He also said that I have severe muscle loss in my shoulders and pecks. How did he know I had severe muscle loss in my shoulders and pecks…..he didn’t know me a few months prior! When I tried to tell him my neck isn’t a muscle ache, it’s a bone ache he didn’t say anything. Scheduled an appointment for four weeks out.

Went home and devised a plan. The pulmonary doc had given me O2 and told me to use it when I wasn’t sitting. So I rolled it over to our exercise bike and started pedaling. Used my O2 meter on my finger to determine if it was helping and with the O2 on I would maintain 97% O2! Then I started thinking that if I provide the O2 to my body with no work, my lungs and muscles would waste faster. So after the first day I stopped using O2. My O2 levels would dip down to 87% but after a week or so I saw improvements. The spirometer I bought measured my lung capacity at 800ml when I was diagnosed in April. My mid-May I had increased it to 1400 ml and by June 6 I was up to 1750 ml. So I had doubled my lung capacity within a few months. I would do a lot of diaphragm exercises. Bought some barbells and started using them for my arms and shoulders. Pretty soon I was walking from my truck to my desk at work (yes I’ve been working at a desk for the last 11 years, terrible for your body) and maintaining 93%-95% O2 levels. Mowing the lawn this year in one sitting and not being winded after or during. Doing things around the house again but I still get winded but not as easily…….just easier than what I should.

After doing all these things along with taking vitamins and minerals, changing diet a little bit but still exercising almost every day I decided to get a second opinion. Saw a neurologist who was in charge of the ALS Clinic in my state for several years and specializes in ALS last week. I like him. He told me after checking reflexes, strength and balance that if I have ALS it would be extremely odd as I have really great strength (he was shaking trying to hold me in place on all exercises), really good reflexes, really good balance (walked on my tip toes, heels, and one foot in front of the other without issue) and sensitivity (he used a tuning fork to determine if I could feel as well as checking to see if I can feel sharps). Asked him if the EMG test comes back dirty if I could still NOT have ALS, he said “yes” as he’s seen it before.

As of right now I go back for another EMG he is performing on Friday. Have done an array of new blood work the others hadn’t done. By the way, while typing this whole thing out I may have felt one slight twitch in my leg….barely.

Not sure where my path is going to take me but I’m 41 and not ready to leave this world behind. My girlfriend has been the best through all this as has my family, so fortunate. Sorry for the book but I didn’t want to leave anything out of my story as someday maybe someone will find value in it during their experience with being diagnosed. Feel free to comment and let me know your thoughts please. Thank You, Tim
 

WeirdTim

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Also, after I replaced the BiPap hose my voice is 90% back to normal most of the time. In the morning it still is horse but improves through the day.

Got a new primary doc and he listened about the arthritis. Prescribed an anti-inflammatory pill twice a day and all neck pain is gone!
 
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Nikki J

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Reading through this I kept saying I hope he is getting a second opinion from a neuromuscular specialist. I am so happy that you are doing so. I hope once all the tests are done you will have another answer

Please do let us know
 

soonerwife

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Good for you Tim! It's always good to get a second opinion. I hope you get good news when you have your next EMG! Not sure I would put a lot of stock in a "medical professional" that gave you that sort of news over the phone based on one test and didn't even do blood work.
 

Clearwater AL

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Tim, after all you wrote, near the bottom there is a key in a paragraph,

"Saw a neurologist who was in charge of the ALS Clinic in my state for several years and specializes in ALS last week. I like him. He told me after checking reflexes, strength and balance that if I have ALS it would be extremely odd as I have really great strength (he was shaking trying to hold me in place on all exercises), really good reflexes, really good balance (walked on my tip toes, heels, and one foot in front of the other without issue) and sensitivity (he used a tuning fork to determine if I could feel as well as checking to see if I can feel sharps). Asked him if the EMG test comes back dirty if I could still NOT have ALS, he said “yes” as he’s seen it before."

You have so much hope. Yes, in the ALS Specialists words, it would be extremely odd... very odd.

Got a hunch the ALS Specialists will give you great news.
 
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WeirdTim

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Appreciate the words from you all, it means a lot.

Forgot to add the first neurologist did do some blood work and MRI's of my head and neck. My new primary looked at the same MRI the first neurologist did and saw the damage from arthritis in my neck.

Also when I was diagnosed I could not breathe lying on my back. Now I can do so although it's not as easy as it was twenty years ago, I can lay with my head flat for a while.

Notice I've become hypersensitive to everything. How I breathe, how I walk, how I do almost anything.

Be well.
 

lgelb

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Tim, I, like Nikki, am very happy to hear you're getting a second opinion and doing better on BiPAP. Without hijacking, let me just point out for other readers that it is rarely appropriate to be prescribed oxygen upon an ALS diagnosis.

Best,
Laurie
 

Clearwater AL

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Tim, I believe you covered your breathing and neck issues in your previous posts around June 2nd. ?

Again, the ALS Specialists will review your entire med history, what was but now has improved and give you an accurate diagnosis. Be patient 'till then. :)
 

WeirdTim

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Tim, I, like Nikki, am very happy to hear you're getting a second opinion and doing better on BiPAP. Without hijacking, let me just point out for other readers that it is rarely appropriate to be prescribed oxygen upon an ALS diagnosis.

Best,
Laurie

Fired the pulmonary doc who prescribed it and had my new primary write orders so they would take it back. Just didn't make sense. It's reassuring that you agree.
 

KimT

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Tim,

I'm so glad you are going to an ALS specialist. I'm hoping for GOOD news!
 

WeirdTim

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Just an update. Feeling kind of lost right now and not sure what my future holds. Had my second opinion a few weeks ago followed up by an EMG last week. Was told at the end of the EMG to stop taking the Riluzole because he sees no signs of ALS. He said my strength is very good, balance and reactions are very good. While doing the EMG he told me to listen and said ALS has a distinctive sound like a diesel semi truck slowing down (thump-thump-thump) and mine sounded more like static or tissue paper be wrinkled up. He believes what he is hearing is a muscle fiber issue, not a neuro issue. So he did blood testing for Pompe’s Disease and I got the results back today, they are negative. The doc told me he will be back in touch with me.

My condition hasn’t gotten worse. Still have the same breathing issues and muscle twitches at the same rate as before. Have had a lot of anxiety over the last few months and now even more since the ALS specialist seems stumped. Had so much hope that it was Pompe’s disease instead of ALS but now my mind is back focusing on the worst case scenario because I know of no other conditions.

Sorry for the bummer of an update.
 

Nikki J

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From what I read:
1You received a very questionable diagnosis of ALS

2 You sought , very properly, a second opinion from an ALS specialist

3 that specialist did a clinical exam and said it did not seem to be ALS and scheduled an EMG

4 the EMG confirmed no ALS and the doctor ordered a test for a possible diagnosis that would fit your emg and symptoms

5 that test was negative

So you have neither ALS or Pompe's disease according to tests and an ALS specialist. There are many many many medical illnesses that cause all kinds of symptoms It is hard to be undiagnosed but surely this is good news? The doctor did not say he thought it was ALS but he would test for Pompe's in case. He said not ALS. Maybe Pompe's? Now it isn't he should either test further or refer you so you can find out what IS wrong
 
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WeirdTim

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Thank you Nikki for the bluntness.....I needed that.

The second opinion doc said that if I had ALS it would be the oddest case he's seen but he's not going to remove the ALS diagnoses until he figures out what is going on. Guess that's a good thing if I do have it as I can stop working and collect disability with medicare. Know I shouldn't be thinking of such things.
 

Nikki J

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"He told me he saw no signs of ALS and to stop Riluzole" this does not sound like someone who believes ALS is on the table

I hope you get to see or speak with the doctor very soon so you can find out what direction to take in finding an answer. I would ask directly whether ALS is still a possibility and what is in his list of possibilities now

When you do get a diagnosis please let us know
 

WeirdTim

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Would like to provide a conclusion to this chapter of my life.

I've been cleared of all muscle diseases as of a week ago. The original neurologist who diagnosed me with ALS did so without listening to his patient or paying attention to symptoms. He put his blinders on and appeared to cease basic commonsense. The primary doctor that I was using from the same organization has been fired by me as well over this. However, the second opinion neurologist and his team were exceptional. Not just because they proved I didn't have ALS but because they listened and treated me how they would like to be treated. When I told the first neurologist that it was odd I was hit by a car and within 24 hours I had ALS he belittled me and told me I just didn't understand.

Although I still have extreme breathing issues, its looking more and more like a phrenic nerve issue due to my head/neck injuries in the accident. Still live in pain everyday and have a long road of testing and such but I'll be alright.

After reading, researching and having the honor of learning so much from those of you suffer from this disease and those of you who lost loved ones because of it, my heart will always be with you. Although I am just one person, my family and friends have been educated on the impact of what ALS does to the PALS and their loved ones. I will continue to support research and do what I can to help.

Thank you again for all the support and helping me prove to formally educated and well experienced people they need to treat people like people.

Take Care,

Tim
 
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