Probably health anxiety, I apologize in advance.

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mlp1234

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I am so ashamed to be posting this here, but I can’t get it out of my head. And yes, I have read the post at the top of the forum.

I am having my third neurological episode in the last 3 years. I had one in 2018. It included vertigo, visual disturbances, and autonomic symptoms (like very low blood pressure). I had extensive testing by an autonomic neurologist, nothing was found. I had a clear brain MRI at that time.

In 2019 I traveled outside the country, and got a severe gastrointestinal illness. At the end of the illness, suddenly my feet and lower legs went numb, I had a sensation of a lump under one of my feet. My doctor took a guess and started B12 injections, and other testing (gastric parietal antibodies) indicated B12 deficiency. I have continued B12 shots since that time. My symptoms resolved after the B12 injections. I saw a neurologist at that time who did some testing, which was normal from his perspective (not sure if there was an EMG, i remember a shock thing).

I had no neurological symptoms until late this year, and they returned at an extremely stressful time. I had severe brain fog (now better), and blurred vision (comes and goes). The other symptoms are primarily in my right leg and foot, although now my left hand/arm feels off, like it weighs less. My right leg feels strange, not exactly numb, but it is like the muscles feel tight, and there are some pins and needles. Symptoms are much worse after exercise, and when I first get up in the morning to shower. I don’t know if I have weakness- I have been mostly in bed for months due to these symptoms, anxiety, and depression, and have lost all my strength. I have lost 20 pounds and have no appetite.

The reason I landed on ALS and can’t let it go is that I also have twitching all over my body. My eye, my foot, calves, tongue, everywhere. I also feel like I am hyperaware of swallowing, and feel like I am getting food caught on the sides of my throat or like there is a lot of mucus. It is suddenly difficult to swallow large pills.

Since this is happening despite B12 treatment, my doctor sent me back to a neurologist. I had a totally normal clinical exam, but based on my symptoms she thinks it is MS. I asked her if it could be ALS, and I think she said something like no. I kept asking what the worst thing would be as far as a diagnosis, and she said MS, but that she wasn’t going to name every possible thing it could be. I am ok with MS and am ready for that diagnosis. Her notes said suspected spinal cord pathology. But now I am home several days later, waiting for a MRI next week, and my tongue feels like it is wiggling at the end (not really twitching). And I now realize that due to COVID masking, she didn’t look at my tongue. And she also said something about how even though my exam was normal, it DID matter if I felt weakness.

It goes without saying I have a MASSIVE amount of anxiety/ health anxiety. I have spent hours and hours researching asymmetrical neurological symptoms, etc., and as soon as I think I can let go of the possibility of ALS, I will read something that brings it back. I think I know the answer, but could this be ALS? I feel like my symptoms fit nothing exactly. Just the fact that I have something that has been relapsing, vs. progressive, points away from ALS. I also understand my sensory symptoms point away from ALS. I spend all day preparing for my symptoms to progress and thinking about what is going to happen. I feel like whenever I research asymmetric leg weakness ALS comes up, and I am then starting all over mentally.

Even having been to the neurologist, I feel like I have now started over at square one as far as anxiety. I am being treated for my anxiety, and I actually just had a medication change that has knocked me off course. I actually had a phone consultation with a previous doctor today, and the first thing she said was, “Your voice sounds so different.” It now feels like chewing is strange and I am slurring a little, and it feels like I can’t really sing anymore. And back to ALS I have arrived.

Again, I am so sorry. I feel like I can’t let this go until I finally post it.
 

ShiftKicker

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Hello-

You state you've read the "Read Before" but you remain convinced your symptoms indicate ALS despite so many things pointing away- numbness, vertigo, visual disturbances, etc are not part of the normal constellation of symptoms associated with MND and point to some other process. It does sound like you have something going on, but it's not clear, after reading your list of issues, why you'd think ALS. It sounds like your doctor is on top of things and is following up with a variety of tests to help clarify what the issue is.

It might be a good idea to find some support for anxiety as you and your doctors work to track down the cause of your symptoms, as your anxiety is leading you to places that facts don't support. Anxiety can also exacerbate things like muscle tension and twitching and can muddy the waters with regards to whatever is causing your symptoms.
 
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mlp1234

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I think that I have extreme anxiety and health anxiety, along with actual neurological symptoms that have been difficult to figure out. Once I started twitching and having the swallowing issues and ALS came up in researching those symptoms, I have been unable to let it go. I do have a therapist and am also seeing someone for medication for anxiety, but the physical symptoms have made it difficult to utilize my normal coping skills (exercise). My anxiety is very severe and poorly managed. I am so very appreciative of your response and the time you took to read about my situation.
 
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