6 months of frightening symptoms

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Yamato

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Nov 24, 2022
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Learn about ALS
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Hello to all,

First of all, I would like to thank you for the time you take on this forum to answer to people like me, a 29-year-old man frightened by this terrible disease. I would also like to point out that English is not my mother tongue so I'm sorry in advance if everything is not perfectly understandable (maybe you know it, but the French suck at English)

My story is quite long so I will try to synthesize as much but if you don’t want to read everything, you can skip directly to parts 3 and 4.


1) About 4 or 5 years ago I started to feel some strange symptoms, some of my muscles would start to move by themselves and I would have tremors in my limbs after doing exercises or holding them in certain positions.


I obviously made the mistake of going to google and it immediately diagnosed me with als.

After a few weeks of anxiety, I managed to force my mind to forget about it by telling myself deep down "well if I have this disease which has no treatment anyway, I might as well pretend nothing happened and only worry about it if things evolve".


2) we now jump in time to the end of August 2022, I catch covid when I come back from vacations. It was the first time I caught it and at first it was what I imagined the disease to be, a kind of flu.


But on the 5th day everything changed, I had a sort of malaise in my shower, I had a strong feeling of dizziness and I had the feeling to have difficulty to breathe. My girlfriend took me directly to the emergency room, where they did 1 or 2 tests and told me to go home and that it would pass with some doliprane.

The day after this discomfort, a very big headache takes me, always accompanied by dizziness and does not leave me any more during more than 2 months. I've had migraines since childhood so I'm used to it and usually I just take a doliprane and it passes quickly. But there it was really something else, a huge pressure in the head, burning sensations behind the eyes, flashes of light when I closed my eyes to sleep, a permanent mental fog.

For that I was followed by a neurologist who prescribed me a treatment for migraines, an ophthalmologist who found tension in my eyes and who also prescribed me a treatment for that.

All these brain symptoms finally stopped around mid-November and what a relief!


3) Unfortunately it was followed by what brought me here today, since these cerebral symptoms disappeared, other more "physical" ones appeared. In order of appearance:


- First, pain in the front of the neck, next to the throat, which radiated to the jaws (first only on the right and then on the left but more slightly).

- Then an intense electric shock sensation that hit my whole right side (arm and leg) all at once while I was just sitting in a waiting room.

- Burning and tingling in the right arm only.

- Pain in the right hand and elbow and some kind of stiffness in the right hand.

- Permanent fasciculations (like popcorn) in my right calf and right foot, associated with a feeling of weakness in this leg, foot that tires faster when I lift it, feeling of knee that will "drop" when I walk.

- Then the same fasciculations appeared on my left leg about a month and a half after the right but without weakness. These fasciculations have never left me since late November even if there are periods of more or less intense.

- Fasciculations throughout the body (eyelids, lips, arms, fingers, neck, chin, shoulders...) but intermittent. And as explained above I have been used to it for 4-5 years.

- In January I had a kind of gastro that lasted 3 days and during this one, one night ago I woke up with a strange feeling in my mouth, as if my tongue were vibrating. The next day I didn’t have that feeling anymore but this time it was more like I had a hair on the back of my throat and on my tongue.

I noticed a little later, as this feeling continued and intensified, that it came from my uvula touching my tongue and giving me this feeling every time I swallowed. I noticed in the mirror that my uvula was leaning to the left.

I went to see an ent, who just told me to take a medication for 10 days, and then the sensation went away even if it comes back from time to time.

- Since the beginning of February, it is the symptom that worries me the most, I have more trouble articulating my sentences when I speak, my tongue seems heavy and tired, as well as a feeling of tension under my chin. I also feel like my voice is more nasal and I often need to clear my throat.


4) Medical examinations conducted:


I have seen my neurologist several times as these symptoms have developed and she has given me a lot of tests that have all returned normal.

- non-contrast spinal cord mri: benign discopathies at C5-C6 and L4-L5. A rheumatologist examined it and assured me that there could be no repercussions on my body.

- non-contrast brain mri: a benign cyst

- ncs of my arms: nothing but a "possible right ulnar radiation without axonal resonance"

- ncs of my legs: nothing at all

- Review of my reflexes: all normal and symmetrical, no babinski

- Emg of 2 muscles in my right leg (the one with weakness and permanent fasciculations): nothing at all according to my neurologist.

I should point out that all these tests were done before the last symptom, which is my speech problems.


Sorry I wrote such a big text and still I’m sure I forgot a lot of things seen as the last 6 months have been a hell of a mess with more scary symptoms than each other.

So finally, I have just a few questions:

Based on your experience, could it be als?

Is a simple emg performed on only 2 muscles of the same limb (right leg) enough to eliminate the disease, even with bulbar symptoms?

Thank you very much in advance for reading me.
 
Based on my experience, it doesn't look at all like ALS. The EMG would have revealed it. My EMG was done long before weakness and I had widespread findings suggestive of ALS.

I would continue to work with your doctors but please try not to Google. Maybe a trip back to your primary care might be of use to figure out what else is going on. Don't be afraid to take something for your anxiety.

A lot of it sounds like post-Covid syndrome but I'm not a doctor and am just basing it on what my nephew went through in 2020. Sadly, his lasted and it caused permanent neuro symptoms.

But, I would not thing ALS.
 
Hello-

It sounds like you've had a pretty tough time. It doesn't sound at all like ALS due to a whole variety of non neurological issues. There is a fair amount of research that indicates Covid affects people in multiple ways and can cause long lasting symptoms well after acute infection. Here is some info and a few links: Covid19 and Neurological Symptoms

You may also benefit from looking up a post-covid or "long covid" group on one of the various social media platforms- and there are many, because you are not alone with this- to find people with shared experience.

Please take care, and hopefully you will continue to find improvement with your symptoms.
 
Hello KimT (sorry to hear about your nephew, I hope his symptoms will fade away) and ShiftKicker, thank you very much for your answers,

I completely agree with you, the first symptoms made my neurologist go directly towards the direction of "longcovid". That’s why during these 6 months I tried not to worry too much and that I didn’t want to mess you with my story even though I watched this forum frequently.

I also went to visit forums on "longcovid" and from what I could see, my recent speech problems do not seem to be a symptom that matches with this disease.

I did not specify it but I already take medication for anxiety, at low doses but almost every day with a few breaks (alprazolam from october to January and prazepam for about 15 days).

I read somewhere that these drugs can frequently give as side effects slurred speech, maybe that’s where it comes from, but if that were the reason I suppose it would be more "intermittent" and not a constant problem. But of course that’s just speculation on my part.

I see my PCP tomorrow to make a point but unfortunately she often has no idea what happens to me and I’m sure she’ll send me to the neurologist again.
 
The benzodiazepines you mention taking for anxiety can cause many of the issues you describe, such as speech difficulties, either constantly or intermittently. They slow down the central nervous system. That is why talk therapy and antidepressants are largely preferred today for ongoing anxiety, unless they do not work at all, which I doubt is true in your case.

Feeling that you need to clear your throat can relate to disrupted sleep, dry mouth/throat, GERD, and/or allergies.
 
Hello again,


I don't know if this is appropriate (I don't want to bother anyone so if it's not, feel free to close or delete my topic) but I thought I'd give you an update as since my last post I've had 2 appointments: one with my PCP and one with a new neurologist (as my regular neurologist is on maternity leave)

The first one with my doctor was on Friday and she told me that I should stop taking benzodiazepines as they are not meant to be taken on a long term basis and that the side effects can be quite many. She told me that in some cases like mine, a short course of antidepressants could be beneficial for my pain and anxiety even though she insisted that she could see that I was not depressed.

The second one with the neurologist allowed me to have a second point of view compared to my usual one. I was honest with him, I explained to him my chain of symptoms since my covid of last August and that my internet research had unfortunately led me to ALS. I also told him about my main concern right now: my speech problems.

In regards to what I explained to him, he immediately told me that in view of my young age, the number of my different symptoms and their diffuse location was not at all in line with this disease, but he still made me go for an emg (ncs + needles).

The emg was only done on my right side (arm, hand, and leg) as it was the most symptomatic and the results were normal.

I asked him if he could also check the bulbar muscles as this was my main concern at the moment but he categorically refused because according to him "this exam is too painful and if there was a problem, for the past 6 months it would have been seen on my other limbs". He saw that I was not very convinced and he asked me to stick out my tongue and in like 3 seconds he told me "nop, no fasciculations".

So, even though I am very happy to have had a normal emg, I still have no real answer on the reason for my symptoms.

I’ll see how things evolve and stop looking on the internet.

Many thanks to this forum and especially to its courageous members.
 
Thank you so much for returning to provide a conclusion to your posting here. It is really helpful for others who search here for answers to see those with similar experiences and know it all doesn't add up to ALS.

While it must be very frustrating to not have a conclusive explanation for your varied symptoms, it is a very good thing indeed to be cleared of ALS. We celebrate this result for you and hope you will be able to get some relief of your symptoms with the help of your doctors.

Take care
 
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