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I know this is a long post. I just needed to let it all out as I feel like I'm losing it right now. I can't really work (I'm a business owner and have basically been on a leave of absence for two weeks), I've half chewed off my finger nails which is a habit I hadn't had since I was a child. I've reduced how many times a week I see my girlfriend because I hide all of my anxiety from her and it really drains my energy to try to be normal around her and enjoy her company even though I love her so much.

I've had health anxiety episodes in the past. The first real one was back in sep 2012. I was still a smoker at the time and I started getting pain in my left shoulder, left shoulder blade and down my left arm. So I convinced myself that I had a pancoast tumor, even though the doctors assured me that it was muscle/nerve pain and that pancoast tumors were almost always in seniors who were heavy smokers their entire lives. Eventually the pains went away and my anxiety subsided (not before the docs gave me a chest CT for my peace of mind). I quite smoking because of that episode so I guess there was some good in it.

The next was concerns that I had a heart problem, specifically a defective mitrial valve. I was having shortness of breath and chest pain. I went for EKGs, echo, the whole 9 yards and nothing. Again, eventually the symptoms for the most part went away and thinking back I believe they were mostly anxiety related especially because my work was super pressurized at the time.

Then came the first really debilitating intense fear when I thought I had ethmoid sinus cancer (which sometimes fluctuated with thoughts that it was other types of throat/sinus/brain cancer). Back in March 2015 I started to get left eye pain, chronic post nasal drip and I would spit out streaks of blood and orange mucus from the back of my nose every day. I also got hit with a few sinus infections. In my mind I was a dead man walking. I went to multiple ENTs. They gave my antibiotics that would knock the infection out but then it would come right back. This made me even more anxious because infections that don't get resolved with antibiotics can be a sign of sinus cancer. So then I had scope after scope done. Switch ENTs over and over again. Eventually I found a good one that I still use to this day. Even the ENT did get suspicious at one point because the bleeding didn't seem to be connected to a sinus infection any more so he decided to send me for a brain MRI. Brain was fine, ethmoid had some 'grey area" that he assured me wasn't cancer but a result of chronic inflammation that he could go in and "clean out". The shocker was a mass in my left maxillary sinus. We weren't even looking for anything there but the MRI finding stated it was suspicious (for technical reasons I honestly still don't fully understand, something about calcification). My ENT told me to relax that it was probably benign but we needed to go in an get a biopsy. Naturally at this point I'm looking up survival rates for maxillary sinus cancer. In my mind the sore throat on my left side was a sign that it had spread to my lymph nodes.
The day the results came back the dr receptionist told me to come in to discuss the results. I live on the UWS of Manhattan and I walked through central park to his office on the UES the whole time thinking I had terminal sinus cancer. Why else wouldn't they give me the results over the phone? MY ENT looked at me waiting in the reception area and smiled "benign!". I basically jumped over the reception desk and hugged him. While he removed the maxillary polyp he also cleaned up my ethmoid and as a result my sinus problems virtually disappeared over the next two months.

There were other symptoms which didn't disappear and that leads me to where I am today. Since maybe august or sep of 2015 I had been experiencing left side neck/throat pain that became especially intense when I spoke for extended periods of time. I also had this strong desire to clear my throat constantly, especially when eating and drinking. These symptoms were not resolved by the effective treatment of my sinuses. In fact, they started to become progressively worse. The throat clearing when eating became more constant and I would also sometimes cough when eating and drinking. And the neck pain was bad enough that I would be mindful of how long I spoke for.

Now it goes without saying that, yes you guessed it, my mind went back into over drive with what could be wrong with me. Throat cancer, esophageal cancer, etc etc.

In the past month, I had multiple scopes down my throat from ENTs. No findings. Then chest x ray, blood work, thryoid ultra sound, EKG, echocardiogram. Nothing, no results. I even had another chest CT since I went back to my old fear of a pancoast tumor. No findings.

My Gastroenterologist suggested I go in for what's called a modified barium swallow. And after doing some research on what that's all about that's when I began to have my now nearly total meltdown.

If the coughing and throat clearing happens after eating it's usually a sign of reflux or GERD. However if it happens DURING eating and drinking it's more concerning because it hints at what they call oropharyngeal dysphagia - something that's often caused by serious neurological conditions.

My gastro did the esophagram and the endoscopy. There were minor findings. Reflux, a minor haital hernia. He didn't see anything which would be causing this coughing and throat clearing during eating. The omeprazole did nothing to help the matter.

So now he's sending me for this modified barium swallow, which I know is to check for more serious conditions, and the next open slot isn't until 4/26.

When I search online to look for hope. To find possibilities that aren't game over answers to my health issue I simply can't find them. Maybe this is the time that my health anxious mind wasn't wrong about there being something wrong?

I have a hard time with thin liquids like water. It causes me to clear my throat constantly. I feel like I have excess saliva in my mouth most of the time. I cough or clear my throat while I'm having a meal every time (there's no exceptions any more with this. Eating is not very enjoyable). I think I see some fasciculations in my tongue although this could be my imagination. When I leave my tongue at rest in my mouth it's still but if I stick it out there's lots of twitching. The odd thing is so far I have no speech problems, and I don't believe my tongue is weak or my jaw or chewing have been affected. When I wake in the morning I feel like the left side of my throat might be a bit swollen or irritated although not painful. There's phlegm on the left side that I spit out in the morning. The pain in the left side of my neck that occurs when i speak has gone away. This has been the case ever since I began taking valium so I wonder if the pain was muscle spasms irritating nerves in my neck.

So to finish up this epic post. I am having swallowing problems. What is called oropharyngeal dysphagia. I can eat most solid foods without problems although periodically through out every meal I'll clear my throat or cough. And thin liquids like water definitely bother me where I need to clear my throat. I also have started for the past week or so to have fasciculations in other parts of my body. Mostly in my calves and thighs when I wake up in the morning but sometimes also in the evening after I get home at night. I went to a neurologist, just a random one I found on zocdoc. He checked my reflexes and limb strength and said everything looked just fine. But he barely even examined my tongue even though I was very clear my concern was bulbar ALS.

He told me the odds of having bulbar ALS were so remote that I shouldn't concern myself. Rationally I know this is true. But then what other possible explanation is there for my swallowing problems? If you go look online there aren't many happy endings with oropharyngeal dysphagia. Stoke (don't think I had one of those...), Parkingsons (I have nothing like those symptoms), MS (again, symptoms don't match up. No numbness, no eye problems)... doesn't seem to be many options other than bulbar ALS.

But then I see the statistics:
ALS 1 in 50,000
ALS under 40 about 10%
bulbar onset 30%
bulbar onset that starts with speech pathology 85%

I'm a male who just turned 37 years old with no speech difficulties just swallowing issues.

That would make the odds for a man my age getting bulbar ALS with this type of onset approximately 1 in 11,0000,000. Not to mention that bulbar strikes mostly senior women 2:1 over men which I didn't even include in this calculation.

The odds would be greater than getting hit by lightening twice (1 in 9 million).

So I know, I know, I need to chill the hell out. But why can't I drink a glass of water without clearing my throat or coughing? And why does it take three damn weeks to get a modified barium swallow test? I live in NYC but it feels like the health care service are comparable to Mogadishu...

Any thoughts or comments are appreciated? I know I just vomited my worries all over you and I feel ashamed. I just keep this all inside. I tell no one in my real life about my anxiety I don't want them to think of me as mental unstable.

Thank you,


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