Ragnar's symptoms - need advice please

Ragnar

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Hello everyone,

I am a 42 years old man from Montreal, Canada. I would greatly appreciate some advices on symptoms I've been experiencing in the past few months. I've seen my general practitioner as well as a physiatry doctor. Got 3 MRI, one for the low and middle spine, one for the cervicals and one of the brain.

I'm 6'3, 255 lbs, relatively healthy, a bit overweight because of all the Covid19 "bored" drinking, but I've been sober for the last 2 months. I suffer from asthma, but only when I run that I need to take my inhaler. I have sleep apnea and sleep with a CPAP machine since 2018. I was tested for Covid-19 last week and I don't have it.

Here are my details:

-Spine MRI was all normal
-Cervical Spine showed an herniated disc at C5-C6, on the left side.
-Cerebral MRI showed 3 small lesions in different places (I only had the report from the physiatry doctor and got sent to a Neurologist, whom I'm waiting to have an appointment with (it's super slow because of Covid...). So for now I have no information on these and what they could mean sadly.

My sister has MS and my first thought is that it might be the same thing I have. But my symptoms are way different than hers and my situation seems to deteriorate very fast in the last 4 weeks.

FYI I read both sticky post on Symptoms and Diagnosis, so I'll go as factual as I can to avoid anyone losing time over my case.

- I've been having a bit of trouble with both my hands since last June. Nothing serious at first, just some fatigue when playing guitar or when doing typing or gaming for a long time. I also woke up many times with my hands numb and tingly for no reason; but that feeling usually disappeared after moving my hands a little.

- During the summer I noticed that I got tired more easily and that I had a hard time recuperating from doing exercise... I blamed it on my new "work from home" routine and the lack of real exercise since March (because of the Covid confinement). My calves seemed to be getting very stiff/cramped and fatigued after only 10-15 minutes of brisk walking at that time. I thought I was just out of shape and tried to continue with my usual daily activities.

- In august, I had an episode where my left shoulder and trapezius muscles got super tense and stiff, I couldn't move them for a few days (this got me to get the first 2 MRIs). The doctor told me that it was due to the herniated disc and that it should get better with time. But he was a bit puzzled on why my right hand was affected and weak as well, hence why he asked for a Cerebral MRI. Got the appointment in October and the results back early November. Now I wait to see a neurologist to get an EMG and the interpretation of the MRI.

- In the beginning of this month, I went through tremendous stressful events (suicide of a friend and losing my job) and my symptoms are worsening everyday. I have generalized muscle fatigue on both my arms and legs, as well as having my neck muscle very weak. I have muscle twitches and fasciculations, a little bit during the day, but a lot when lying down at bedtime. I have a hard time texting with my phone as my hands get very weak, very fast.

-So far I have NO FAILURE on muscle movements, only a very hard time to move my fingers or to simply lift a frying pan. I can still do all the normal things but my endurance is very low. I can walk on my toes and heels for many meters without problems. I ask a physiotherapist friend to perform the Babinski reflex test and it was normal. I also have a normal Hoffmann's reflex.

-I tried to do a small training 3 days ago (3 sets of body weight squats, 3 sets of light bicep curls and 3 sets of light deltoids raises). I'm still very sore and all muscles are very stiff and fatigued, recuperation is definitely not normal.

- Now I am barely able to get out of bed, being too tired and weak. My abdominal muscles now seem to be affected and I have a hard time maintaining a good posture without considerable effort. I kinda "feel" them having a hard time most of the time, even when in bed.

- One thing I noticed was that my SpO2 levels on my pulse oximeter reported very low oxygen levels while lying flat (around 90-92%, while when I'm up and active it is at 96-99%). I have a CPAP Machine to sleep and it no longer seem to help out as well as it was before. When I fall asleep my SpO2 goes down as low as 82% and go back up for a while, then down again. It is very puzzling and I wonder if it's because my diaphragm muscle is getting weak as well :-(

So here's my rather complicated case. I'm very anxious and nervous as I'm not improving on any symptoms as days goes by... and I might see that Neurologist only months from now.

Any input would be very appreciated.
Many thanks
- Ragnar
 

Nikki J

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Well brain lesions don’t suggest ALS. Neither does feeling tired and weak. Also you describe multiple areas affected yet no failure.

I am sorry for the loss of your friend and for the stress of job loss - always difficult more so now.

I don’t know what is wrong. As I said it doesn’t sound like ALS. Hopefully the neurologist will find something fixable. Please let us know what your eventual diagnosis is
 

lgelb

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I would also keep in touch with your internist, as not everything may be down to one cause, and a single negative COVID test may be followed by a positive result. But as Nikki says, this does not sound like ALS.

Best,
Laurie
 

Ragnar

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Thanks for the replies guys, very much appreciated. I have a small update.

I went to the ER today as I was feeling very weak and dizzy. I saw an internist and he did a lot of blood test and found absolutely nothing wrong. CK was normal and all the other usual tests were OK. Also did a breathing strength test and scored 148 inhalation/150 expiration. He made me do a few neurological/physical tests and all were OK except a bit of vertigo and a lesser hand grip (but not dramatic); so, no clinical lack of strength. They put me on the priority list for a neurologist and I should see one within 2 weeks.

On another note, I had a new symptom today that I never felt before : a very subtle "buzz" in my left feet and calf. It's not like a twitch, it's a low and constant rumble... been like that for a few hours and still doing it. Is it something to worry about? Sorry for my anxiety about this... it's a very strange mini-internal tremor.

Best,
R.
 

lgelb

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Again, not sounding like ALS but with lesions/vertigo, glad you're seeing a neurologist soon. As for the CPAP, often settings need to be changed as apnea waxes and wanes depending on things like weight, training and other conditions. That does not have to be related to your chest muscles at all.

So you could try, for example, going up one cm on the settings to see if that helps and if it does, go up from there until you are in a better place. Or, not knowing the system in Canada well, perhaps there is a respiratory therapist who can help you with settings. You do not want your SpO2 to be regularly <90%, at worst.

Best,
Laurie
 

Ragnar

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Hello everyone,

A small update here while I wait for a Neurologist to get back to me. A sleep technician changed the settings of my CPAP machine and I stay above 92% all the time when I sleep now, so it's a good improvement here. Thanks a lot Laurie for the tip!

I'm still getting very anxious about my symptoms as I see no improvement in the last few weeks and a very fast progression. I'm noticing that both my shoulder muscles are getting very weak and fatigued with the most common tasks now. Even when I wake up I find it hard to push the blankets...

I can still do exercise a bit, but my muscles get very "pumped" and stiff after a very short time, especially my hands/arms/shoulders (like I get to muscular failure after only a few light reps of a movement). Basically I can't walk long distance nor do any physical things without having my muscles feel very heavy and hard to move... Resting/sleeping is not helping out with recuperation much.

Still no failure to "do" something... but is it possible to "progressively fail"? or it typically go from 100% normal function to no longer able to do the movement?

Thanks and best regards,
R.
 

lgelb

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The latter. ALS is a disease of losses, not feeling that you are about to be weaker.
 

Ragnar

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I understand. My problem seems to be more about a diminution of muscular endurance and twitches after exercising, not loss of strength or ability to do specific movements.
 

lgelb

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Precisely. The latter is characteristic of ALS (as well as other disorders, with exams and testing to distinguish them). The former is not.
 

Ragnar

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Hi everyone,

I'm back with a small update.

Finally saw a neurologist on Tuesday. He's a 65 yrs old veteran and saw a lot in his career. He did a full 30 minute neurological exam (clinical strength, reflexes, and the whole usual neuro exam routine). He told me that everything seemed normal to him and couldn't explain my loss of strength and endurance in my arms, legs, diaphragm, neck and shoulders. To him I'm still strong but since he don't have a baseline of how I was before, he can't really make a proper definitive diagnostic although he said that he's 90% sure I don't have ALS or MS. For him having problems with "moderate" effect on so many symmetrical parts of my body points away from MS or ALS as I can do all movements. So he sent me on my way with an appointment in 3 months to check how I'll be at that point...

I still feel really weak and my symptoms are more pronounced in certain area like my deltoids, neck and breathing muscles feeling like they will give up at any time. I also noticed that my weakness is mostly found when I do a "negative" muscle movement (i.e. when I lift my arm up in front of me and lower it slowly, or when I raise my knee while standing up and I put it back down).

On the positive side, I have a lot less muscle twitching as I've been resting quite a lot.

My SpO2 is still quite low when awake and asleep, with my body not intuitively breathing deep enough, so I'm chasing down a pneumologist for an appointment (quite difficult in these dire Covid19 times).

Should I try to convince him to do an EMG even if he's not worried about my condition for now?

Thanks a lot and have a restful weekend,
R.
 

Nikki J

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Well as far as ALS it didn’t sound like it to us and even less given your report from today. I am not in favor of pushing for tests anyway

what was the explanation for your brain lesions?
 

Ragnar

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Thanks for the reply Nikki. He told me that in a study he worked on, he saw many siblings with a small number of brain lesions and some of them had MS and other never developed the disease, especially male VS female. He told me that many people have these small lesions due to head trauma, high blood pressure and other factors. He said that for now he doesn't see a MS pattern, but he will do another MRI in 6 months to see if there is other lesions.
 
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