Told not ALS five times.....

[Eric68]

Here's my story (47yo male):

Woke up on a Sunday morning four months ago and decided to take my usual three mile walk around the neighborhood. Noticed slight labored breathing and pounding heart beat. Had never noticed either symptom before. Was referred to a cardiologist within a week when symptoms didn't subside. He did an ultrasound, EKG, and 24 hr Holter....all normal. He advised my GP that it was probably stress. He put me on a beta blocker (which helped with the throwing heart beat)

Symptoms continued. Into the fourth week, i started having episodes of being "out of it"....couldn't concentrate at work; breathing had become an issue during exertion and I had stopped doing any type of exercise (biking, lifting weights, walking). Over that fifth weekend, I pulled a muscle or pinched a nerve in my right shoulder and my arm was in extreme pain. Saw a chiropractor and he also noticed my breathing and said my diaphragm muscles were very tight.

On the fifth weekend, I went to a party in which I found that I could not stand for more than 15 minutes without feeling like I was going to pass out. My GP referred me to a neurologist. He looked at all my reflexes, had me walk on my toes and heals, and did some other clinical exam. Said everything was normal....i may have a virus.

During this time my GP did an enormous amount of lab work on me and everything came back normal.

GP referred me to a pulmonologist. Saw him seven weeks into these symptoms. He did all the tests and they came back normal. Saw him two weeks later for follow up and breathing test was normal.

During this 7-10 week period, I started noticing that my thighs were getting weaker when walking down stairs. I also felt like they had both atrophied a little as had my right arm. I saw the same neurologist and he performed the emg test (electrodes and pins) on my feet, calves, thighs, fingers, hands, upper/lower arms. Everything came back normal. He said I may have the early signs of carpal tunnel in my right hand.

I went back to him about week 12 complaining of "waves" that i could see in my thighs when flexing and some twitching in my right arm, cramping on right side and cramping in lower right arm when bending it. I also had developed some shaking in my arms (he said essential tremors) .He looked and decided to refer me to a neuromuscular specialist.

I saw the specialist a week later. He had been sent all of my lab work (cardio, pulmonary, GP, neuro). I showed him the twitching and atrophy and he did some reflex testing and strength testing and said "you don't have ALS, you should swim for an hour a day." He placed me on a med to control "benign twitching."

We're now into about the 17th week. My breathing is really "off" at times. I have fatigue in the morning and seem to get a good burst of energy in the afternoon/evening. I am on five meds now....two for BP, one for anxiety, one to sleep, and one for tremors. I feel my thighs are stronger when walking down stairs ( i have been doing some lunges) and the tremors aren't as bad.

So to sum it up, i have the following over 17 weeks:

*breathing feels like high altitude when doing most activities; have to relax often
*smaller muscles in thighs and arms
*bouts of fatigue, esp. when waking up in morning
*bouts of not being able to concentrate, esp. in morning
*twitching in right tricep when using (does not happen when still)
*cramping on right side (ribs) and lower right arm when moving (does not happen when still)
*still weakness in thigh muscles when walking down stairs, but seems to be better with some exercise
*tremors/shaking of arms when using utensils,etc
*have quit job due to excessive time off; just do not feel well

Any ideas as to what is going on? Most doctors, esp my GP and my close family members think it's years of ongoing stress. I find it very hard to believe that stress can cause all of the above symptoms, especially the constant breathing issues while doing any type of exertion.

Thank you!

 

[Lkaibel]

I am sorry you are having a hard time and I hope the cause is found, however the cause is absolutely not ALS.

Not only have multiple MD's told you so, but I can say with 100% confidence that "weakness in thigh muscles when walking down stairs" getting BETTER with exercise is absolutely not ALS. When you are falling down stairs for no particular reason, you have an EMG with chronic and active denervation, your physical exam shows clinical weakness (not what you feel), and MRI's and blood work show no other cause AND a neuromuscular specialist at the least, and an ALS center next, says you have ALS or possible ALS then we have something to talk about. I am writing all that out because I want you to see THAT is what all it takes, generally speaking to end up with an ALS diagnosis. It's a lot, and it's not you one bit. Be very happy for that.

 

[GregK]

Agree.

Make that 7 times.

 

[bigmark1954]

Make it 8.....................................

 

[affected]

Make it 9 times now - definitely NOT ALS.

Best of luck, but whatever is going on is very likely able to be treated once they pin it down.

 

[Eric68]

Thanks for all the responses. I am going to continue to investigate. My breathing is what really concerns me. I literally can't do normal things (wash dishes, walk, take a shower) without the feeling of being in high altitude and not getting enough breath.

 

[KimT]

I agree there is no way it's ALS.

I will say that stress can and does cause all the symptoms you describe. I've been there, back in 1999. You may have some other minor things wrong but you do NOT have ALS. I'm happy for you.

Take care of the anxiety.

 

[lgelb]

Eric,
I'm not clear on how long you've been on which meds, but the combination you're on can certainly cause fatigue or make it worse. I would ask for a re-evaluation of your meds given whatever your BP, etc. really is at the moment, since you could have had a virus that is no longer active, etc. Beta blockers definitely require titration to the right dose (improving the rhythm, not too much fatigue).

I would make sure you've been tested for Lyme, GB -- in fact, I would see an infectious disease specialist at UT or Baylor since I don't see this as a primary cardio or neuro disorder. It seems more systemic.

None of this sounds like ALS, as I think you know by now. And that's great news. Whatever else you may have is likely treatable.

Best,
Laurie

 

[starente15]

Agree with everyone else that it doesn't resemble ALS one bit. Have you had a sleep study done by any chance?

 

[Eric68]

Thanks again for all the responses

I'll back up a few months prior to the first signs of breathing issues.

Back in mid December 2015 I noticed a pain in my left chest when I swallowed solid foods (especially something like chips). It was as if my esophagus was pushed to the left. My GP told me it was likely that my stomach was being pushed up because of a hiatal hernia....this lasted only three days. Around the same time, I also experienced a significant spasm in my left tricep; it usually happened for a couple of minutes in the late morning; this lasted only three days and never occurred again.

In February 2016, I experienced the same "pain" in my left chest when eating certain foods. This lasted for the whole month. My GP referred me to a GI doc for an upper endoscopy. During the month of March, I experienced no symptoms, but had the endoscopy done at the end of March. The results were hiatal hernia and microscopic evidence of ulceration.

My concern when I made my first visit to the neurologist at the beginning of June was that I was experiencing the lack of stamina issues when standing for short periods of time. I also mentioned the breathing issues and inquired if this could be ALS. His response was "no, breathing issues are at the end of the disease." Well I've read that that is not always true, that for a small percent of people, respiratory problems can be the first symptom.

I ask this because I'm wondering if my respiratory muscles were atrophying while experiencing all these GI issues. I have noticed that my diaphragm seems to be smaller, but I've been told that's due to losing weight (I had gone on a diet in March-April and lost 15-20 lbs).

The pulmonologist basically said that I was having broncho spasms. I have used an inhaler but it doesn't bring relief.

And one last note. When the neurologist performed the test on me, he did the electrodes on all the body parts I mentioned. He only did the needle testing on my calves and thighs.

Laurie had mentioned Lyme disease. I don't believe that I've been tested for that. Would Lyme disease cause such breathing as the feeling of being in high altitude (thin air) when performing basic tasks?

Thanks again

Thanks again.

 

[starente15]

We aren't doctors here so we can't diagnose you. If you've been told five times that it's not ALS and then more so by people here, there's really nothing else we can offer. Hope you find answers soon.

 

[Eric68]

Laurie,

I have been on Lisinopril for ten years. I was placed on Metoprolol during the second week of my "hard" heartbeat/change in breathing. The Metoprolol helped with the heart beat sensation right away. I did not have a change in breathing; it is the same if not worse. I have also been taking Temazepam since the first week of symptoms in order to fall asleep. Before any of this started, I was a great sleeper.

My fatigue started around the 7th week when I went to the pulmonologist. I mentioned this to him and also my problems with walking any distance without feeling the shallow breathing sensation. His basic response was to "keep trucking" because my tests were normal.

I have been on an anti anxiety med since the 12th week and an anti-convulsant since the 16th week

Five drugs all together.

 

[gooseberry]

Eric,I understand this is hard. Have them look at dehydration, caffeine intake, vitamin deficiency, thyroid problems, etc.

I know you are looking for answers but this forum is not the right place. People here are very ill and the cals are stressed. Go to your gp, and have a talk. What have they ruled out, what is on the table? Anxiety and panic attacks can make you feel like you cant breathe, can cause racing heart, etc.

This is not the right place for you. Good luck in finding answers.

 

[Eric68]

Tony,

I read your story when browsing through the site. I saw your youtube videos of your thighs, with the "waves" that look very similar to mine....I've also lost muscle in both thighs (and arms, especially the right one with the twitching). I have fatigue in the morning and gets better as the day proceeds. Do you have any breathing issues? When I do any type of activity, I feel like I can't catch a full breath; however at rest (and when not anxious), I breath just fine. I'm also able to sleep at night as long as I take a sleeping pill.

My first and only EMG was normal....however, he only placed needles in my calves and thighs (which in a way reassures me because if there had been any denervation, it would have shown on my thighs where I'm having the "waves" and atrophy)

My sister has MG....but she has the "classic" symptoms.

It's crazy and debilitating.

 

[lgelb]

Not to prolong this thread since you have your marching orders, but temazepam is itself an anti-anxiety drug (there are far less risky sleep aids, so I wouldn't use it for that) so if you're on an SSRI as well (hopefully not another benzo!), there's a lot of psychoactive on board for someone who doesn't seem to have psych issues, and benzos only make breathing worse for most people in sleep.

Get thee to an ID or a better internist. You're wasting your time w/ neuros. Yes, Lyme can cause the thin air feeling, but so can a lot of other things. Find out what is going on, so you can fix it for real. If it's anxiety, it's anxiety, but either way, this is the wrong place for you to be.