Worried

[robertmanville]

Hello,

First i would like to thank you for your time.

I have been followed by several doctors including neurologists but no one can provide me with answers. Could someone please share your thoughts on the following symptoms which started in early 2019:

- Night sweats = Started in early 2019. Had 20 night sweats in a row but stopped just like that. This was the first symptom that lead me to the doctor.

- One sided facial weakness = Sensations alter from severe to mild and are around the cheek bone only.

- Vocal cord pain = Ups and downs on pain. Some days i don't have vocal cord pain and some others i don't. Speaking also feels effortful (at times). It feels like you exercised really hard. You know that feeling?

- Sacroiliac paint = Pain around buttock (especially left) hurts all the time and gets worse with Hip twisting and bending and walking.

- Vertigo = Vertigo when i am in crowded spaces like malls or walking on the street.

- Hands falling asleep = Hands fall asleep especially at night when sleeping on my stomach. MRI shows severe stenosis C5-6-7.

- Extreme exhaustion = Ups and downs and need to tack period naps during the day. Never had this before 2019.

- Feet pain = I always need to wear shoes / slippers. Very difficult to walk on hard floors.

- Overall Malaise = Just feels like everything is an effort.

With all these issues going on, I am still able to play competitive hockey and continue with my days. I can still lift heavy weights, write, type very quick (75 words a min), do push ups (30 in a row +) walk 20Kms in a row but i'm just not feeling well.

Questions: 1) Would i be in worse shape if it was ever ALS and this after 2 years since onset? 2) I understand ALS does not cause pain, so am i write to say when i walk or talk, as discussed earlier, i shouldn't have any pain in my buttock or vocal cords?

Thank you for your time.

Robert

 

[Nikki J]

I hope you read this Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

it totally doesn’t sound like ALS. If you have been seeing doctors I would think they would have told you that. I don’t know what is wrong with you but it isn’t even clear it is neurologic at all. If you haven’t seen a rheum that might be an idea. Otherwise talk to your gp. It is their job to direct your care

good luck

 

[robertmanville]

Thank you Nikki.
I am going to see another Rheumy. Last one i saw examined me for a second and said it wasn't anything Rhemy related despite me having: an enlarged spleen, pain in toes and feet. weird sensation especially in morning or with no exercise.

I understand i won't be able to reply again so i would simply love to put this fear to sleep if you can answer my two questions:
1) Would i be in worse shape if it was ever ALS and this after 2 years since onset? 2) I understand ALS does not cause pain, so am i write to say when i walk or talk, as discussed earlier, i shouldn't have any pain in my buttock or vocal cords? So if i understand, PALS do not feel any pain whatsoever in the onset? No vocal pain no buttock pain no feet pain? Thank you again. Robert.

 

[affected]

I don't think you still went and read the post Nikki linked you to, please do read it through twice to take it all in.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

My husband was dead before a year was up if that helps you understand.

 

[TippiLeigh]

I’m sorry you’re going through all that Robert. Every person with ALS or MND has had a completely different start to their disease and different progression of symptoms. Sometimes people like to try and make everyone fit into one clean box of symptoms but that’s not always the case. I have probable PLS (a type of motor neuron disease that affects upper motor neurons), but my doctors won‘t call it definite PLS until it’s been at least 4 years, because in their words, “We need to wait to see if this develops into full-blown ALS”. So, to answer your two questions:

1) Not necessarily, everyone is different. I know some people who have had slow-progressing ALS for years and still can walk and talk and have very little diminished physical issues. I also know others that have died within 6 months of diagnosis.

2) Usually pain associated with ALS happens after some time when muscles breakdown or from inactivity, etc. But again, I’ve also known people who have had pain from the very start and are quite offended when doctors say “there’s no pain with ALS”, because that’s a very misleading statement and not that cut and dry.

With all that said, you most likely don’t have ALS. It is a rare disease. There are a lot of different disease that have overlapping symptoms. I had many of the symptoms you mentioned. Turns out, not all of them were due to MND. But the best thing you can do for yourself is keep working with your doctors and be your own advocate. There is not one neurologist on this page that can tell you what you have is or is not ALS. Only a neurologist can tell you that. The people here can only share THEIR story, but it’s not everybody’s story. So, I wish you the very best on your health journey and I hope that you get some peace and healing.

 

[Bestfriends14]

Hi Robert,

As affected and Nikki mentioned, this totally does not sound like ALS. There are specific things in the onset of ALS that you are not evidencing, that being progression of failure.

My husband has had ALS for eight years, diagnosed for four years. He's very slow progressing, and it was only looking at pictures and videos from 2013 did we see he had drop foot. It progressed and became pronounced in 2015, causing him to trip and fall, thus putting and end to the running he used to love so much. By the time he was diagnosed in 2017, he could not walk without a leg brace and cane.

What I'm saying is, however slight his first symptoms were, they were always marked by progression. He had not one of the symptoms you listed, nor did any friends of ours with bulbar onset. None of his, or their symptoms, ever got better.

You see, here's the thing, Robert, the ALS community is a small one and we hear stories of how ALS starts by many in the ALS community. We see and hear about everyday. In fact, in the past 15 months, ten members of our local ALS community have passed away to this beast. Not one member that I've heard has started with your symptoms, but every single one had progression from onset. No one here is a doctor, but sadly, we know ALS well.

Please read the post our members so kindly shared. I hope it helps to ease your mind. Please update once you've had an idea of what your issues may be.

Good luck to you.