Tomathy
New member
- Joined
- Jan 24, 2025
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
First of all thank you for having a forum like this available. Thank you to the moderators for answering everyone’s questions. Apologies in advance for the long post, just wanted to provide context.
I have not been diagnosed with anything that explains my current symptoms but something is up and I'm worried that it is MND. I’m 39 M and married to my best friend and we have a little one year old after 9 years of trying. Like everyone else I don’t want to leave them behind.
I woke up one day in August and I was pale in my face and hands with the following symptoms:
* Fatigued to the point where I could sleep in till 1pm after going to bed at 8pm.
* Joints in my legs are stiff and sore in the mornings, it takes them a while to warm up and then the pain goes away.
* Balance was off, which was not due to muscles.
* Vision was messed up and couldn’t keep up with my movements. If I turned my head my vision would take a minute to catch-up.
* Very forgetful, I struggle to recall information like someone's name or doing basic maths in my head (something I was very good at before)
* Burning pain in the soles of my feet whether I’m standing or lying down.
* Peroneal tendonitis and or Cupid syndrome
* Arms feel heavy/weak (sensation) actual strength and muscle tone seems same as before. Recently went on holiday and had to carry 7 pieces of luggage. My arms fatigued a lot quicker than it would have previously.
* Left hand feels very uncoordinated and clumsy. I’ve dropped a few things that I wouldn’t have before. As in something would just slip out of my hand. I also have an occasional tremor in my left hand if I use it on the iPad to type.
The symptoms in bold is still present.
Over the next few months and weeks the following symptoms started:
* Weird tingling sensation on tip of tongue, almost like an itch (since December).
* Skin feels very itchy all over. Often it feels like a bug is crawling on my skin and then there is nothing there. (Since December)
* Numbness in middle of back right side (since November). Only present while walking.
* Few times a day heart rate goes over 105bpm when I'm relaxing (since September)
* Random sharp pain in lower legs and arms that will stick around for an hour or so then will be gone for days, only to return again. (Since September)
* Twitching left eyelid and left face (since December)
* Twitching in leg and arms daily but it is very faint. (Since January)
* Feels like my entire body is vibrating internally. It’s not visible but more a sensation. (since January)
Tests and surgeries I've gone for in 2024:
Sleep study - Diagnosed with mild sleep apnea
FESS Sinus operation and Laryngoscopy
Colonoscopy and Endoscopy - Diagnosed with Diverticular Disease
Liver Ultrasound - Diagnosed with NAFLD
Lung xray - clear
Throat ultrasound - clear
Brain MRI - clear
Sinus and Throat CT - sinuses blocked and laryngocele resolved
Various blood tests - high cholesterol and high iron, vitamin D on the low side everything else normal including vitamin B12, pancreas, glucose, liver and kidneys
The reason for some of these tests started with sinuses and the laryngocele. I lost my appetite and lost 8kg over 6 weeks and struggled to put weight back on. At this stage my PCP is happy with where I’m at and isn’t concerned about anything sinister and is also not motivated to do any other tests to get the bottom of this. So I asked for a referral to a General Physician which I got and he sent me for some blood tests but ultimately said “the clean brain MRI rules out MS and if you have ALS who cares you can’t do anything about it. But your symptoms don’t sound like ALS.”
What concerns me is that this Dr brought up MS and ALS and then dismissed both. Why bring it up if it wasn’t on the radar. Anyway so now I’m back to my PCP and wonder where to go from here.
I found the “read before posting/could this be ALS question” and initially I found it very helpful and eased my mind, but as I read more posts on here, I’ve started to question my symptoms again. For example relating to weakness. My arms and legs feel weak some days and other days they are fine. My left hand feels weak everyday and more uncoordinated than usual seeing as it’s my non dominant hand. I can still tie shoe laces and do and undo buttons. Does my symptoms present as MND?
Thank you again for reading. I’m blessed by your willingness to support many people like myself that ask for your input and then get to carry on with their lives as normal. You are amazing people!
I have not been diagnosed with anything that explains my current symptoms but something is up and I'm worried that it is MND. I’m 39 M and married to my best friend and we have a little one year old after 9 years of trying. Like everyone else I don’t want to leave them behind.
I woke up one day in August and I was pale in my face and hands with the following symptoms:
* Fatigued to the point where I could sleep in till 1pm after going to bed at 8pm.
* Joints in my legs are stiff and sore in the mornings, it takes them a while to warm up and then the pain goes away.
* Balance was off, which was not due to muscles.
* Vision was messed up and couldn’t keep up with my movements. If I turned my head my vision would take a minute to catch-up.
* Very forgetful, I struggle to recall information like someone's name or doing basic maths in my head (something I was very good at before)
* Burning pain in the soles of my feet whether I’m standing or lying down.
* Peroneal tendonitis and or Cupid syndrome
* Arms feel heavy/weak (sensation) actual strength and muscle tone seems same as before. Recently went on holiday and had to carry 7 pieces of luggage. My arms fatigued a lot quicker than it would have previously.
* Left hand feels very uncoordinated and clumsy. I’ve dropped a few things that I wouldn’t have before. As in something would just slip out of my hand. I also have an occasional tremor in my left hand if I use it on the iPad to type.
The symptoms in bold is still present.
Over the next few months and weeks the following symptoms started:
* Weird tingling sensation on tip of tongue, almost like an itch (since December).
* Skin feels very itchy all over. Often it feels like a bug is crawling on my skin and then there is nothing there. (Since December)
* Numbness in middle of back right side (since November). Only present while walking.
* Few times a day heart rate goes over 105bpm when I'm relaxing (since September)
* Random sharp pain in lower legs and arms that will stick around for an hour or so then will be gone for days, only to return again. (Since September)
* Twitching left eyelid and left face (since December)
* Twitching in leg and arms daily but it is very faint. (Since January)
* Feels like my entire body is vibrating internally. It’s not visible but more a sensation. (since January)
Tests and surgeries I've gone for in 2024:
Sleep study - Diagnosed with mild sleep apnea
FESS Sinus operation and Laryngoscopy
Colonoscopy and Endoscopy - Diagnosed with Diverticular Disease
Liver Ultrasound - Diagnosed with NAFLD
Lung xray - clear
Throat ultrasound - clear
Brain MRI - clear
Sinus and Throat CT - sinuses blocked and laryngocele resolved
Various blood tests - high cholesterol and high iron, vitamin D on the low side everything else normal including vitamin B12, pancreas, glucose, liver and kidneys
The reason for some of these tests started with sinuses and the laryngocele. I lost my appetite and lost 8kg over 6 weeks and struggled to put weight back on. At this stage my PCP is happy with where I’m at and isn’t concerned about anything sinister and is also not motivated to do any other tests to get the bottom of this. So I asked for a referral to a General Physician which I got and he sent me for some blood tests but ultimately said “the clean brain MRI rules out MS and if you have ALS who cares you can’t do anything about it. But your symptoms don’t sound like ALS.”
What concerns me is that this Dr brought up MS and ALS and then dismissed both. Why bring it up if it wasn’t on the radar. Anyway so now I’m back to my PCP and wonder where to go from here.
I found the “read before posting/could this be ALS question” and initially I found it very helpful and eased my mind, but as I read more posts on here, I’ve started to question my symptoms again. For example relating to weakness. My arms and legs feel weak some days and other days they are fine. My left hand feels weak everyday and more uncoordinated than usual seeing as it’s my non dominant hand. I can still tie shoe laces and do and undo buttons. Does my symptoms present as MND?
Thank you again for reading. I’m blessed by your willingness to support many people like myself that ask for your input and then get to carry on with their lives as normal. You are amazing people!
