MTackett06
New member
- Joined
- Feb 18, 2021
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 05/2019
- Country
- US
Hey everyone.
I am new here, and I put that I am caring for someone with ALS but I'll be honest--thats not 100% true. I did help take care of my uncle who had ALS and he passed some years ago sadly. I wasn't sure what to put as to why I was here--we have no diagnosis yet but ALS is on the table the neuros say for me. Let me explain what has been going on lately to bring us there. I won't explain all my health issues but I do have an extensive history and all is being taken into consideration in regards to this.
So it started at the end of September 2020. Seemed to come out of nowhere. I would be walking and my left leg would just buckle beneath me and I would almost fall. I was a very active person prior to this. In October things amped up and muscle cramping in left leg started, flutters, spasms, cramps--my left leg started doing weird things. Then the numbness and tingling in the middle toes of both feet. Then I got COVID in November--affected me entirely neurologically. I was sick most of November. I also ended up in the hospital in January because of random unexplained fevers. Finally sent to Mayo clinic out of state to see Neuros there. Up until January 28th when I went to Mayo--my regular Neuro did limited MRI imaging with no contrast.
So when I see the docs at Mayo at end of January they look everything over and said my Neuro lacked in aggressive testing and they were gonna start the process of elimination. They also had me start a daily health journal to write down what seems to be progressing fast.
Also during this I was addressing my GERD I was told I have but found out with Manometry testing its actually Type 2 Stage 3 Achalasia and I'm having spasmodic episodes with my muscles that are causing swallowing issues and not allowing food to enter my stomach. So my new GI who specializes in these motility disorders put me on an antispasmodic.
Ever since getting back from Mayo things I was explaining to him then have all seemed to get worse.
I was diagnosed with clinical weakness on my left side at Mayo. It has spread up to my left arm--I have a hard time holding my phone, chopping carrots was one of the first really difficult things too. Just feel completely lacking in strength on left side. I drag my left leg most days and trip frequently. Neuro also said I have short term memory loss going on--more than the normal person. Hearing loss only on my left side.. phantom smells... constantly smelling something burning or rotting.. everything tastes off or bad.. last night popcorn smelled like rotting sour burnt hotdogs.. my husband's cologne smells like chemicals..
The Neuros at Mayo are calling it a complex neurological condition unknown at this point. The main things they said we are looking for are MS, ALS, and parkinsons. We have an MRI with contrast scheduled to finally see my entire spine correctly. Also an EMG scheduled of my left leg. Then if we are still wondering we are gonna do the lumbar puncture he said.
I also had 'hot flashes' in my left toes.. it felt like I was dipping my toes in a jacuzzi.. then the hot flashes started to move to the bottom of my foot, my heel, and my calf.. were almost up to my entire thigh with hot flashes now in left leg and foot.
My next appt and all this testing is going to be done on March 11th back at Mayo in Wisconsin. Because my Uncle had ALS and I've watched it take away someone slowly.. its really making these things happening with me hard to ignore...
I know that noone here is my doctor and only the docs are gonna be able to figure this out.
But I was hoping to have someone come here and just say they too went through this.. what was the outcome? Or their loved one presented this way etc.. for me its just not knowing that's bothering me so much.. while watching my body turn into one I dont recognize anymore.. I've never felt so physically limited in my life.. my left sided weakness is really becoming a problem..
So sorry for the length and thank you so much to those who get this far and listen to my venting!
Thanks all. God bless
I am new here, and I put that I am caring for someone with ALS but I'll be honest--thats not 100% true. I did help take care of my uncle who had ALS and he passed some years ago sadly. I wasn't sure what to put as to why I was here--we have no diagnosis yet but ALS is on the table the neuros say for me. Let me explain what has been going on lately to bring us there. I won't explain all my health issues but I do have an extensive history and all is being taken into consideration in regards to this.
So it started at the end of September 2020. Seemed to come out of nowhere. I would be walking and my left leg would just buckle beneath me and I would almost fall. I was a very active person prior to this. In October things amped up and muscle cramping in left leg started, flutters, spasms, cramps--my left leg started doing weird things. Then the numbness and tingling in the middle toes of both feet. Then I got COVID in November--affected me entirely neurologically. I was sick most of November. I also ended up in the hospital in January because of random unexplained fevers. Finally sent to Mayo clinic out of state to see Neuros there. Up until January 28th when I went to Mayo--my regular Neuro did limited MRI imaging with no contrast.
So when I see the docs at Mayo at end of January they look everything over and said my Neuro lacked in aggressive testing and they were gonna start the process of elimination. They also had me start a daily health journal to write down what seems to be progressing fast.
Also during this I was addressing my GERD I was told I have but found out with Manometry testing its actually Type 2 Stage 3 Achalasia and I'm having spasmodic episodes with my muscles that are causing swallowing issues and not allowing food to enter my stomach. So my new GI who specializes in these motility disorders put me on an antispasmodic.
Ever since getting back from Mayo things I was explaining to him then have all seemed to get worse.
I was diagnosed with clinical weakness on my left side at Mayo. It has spread up to my left arm--I have a hard time holding my phone, chopping carrots was one of the first really difficult things too. Just feel completely lacking in strength on left side. I drag my left leg most days and trip frequently. Neuro also said I have short term memory loss going on--more than the normal person. Hearing loss only on my left side.. phantom smells... constantly smelling something burning or rotting.. everything tastes off or bad.. last night popcorn smelled like rotting sour burnt hotdogs.. my husband's cologne smells like chemicals..
The Neuros at Mayo are calling it a complex neurological condition unknown at this point. The main things they said we are looking for are MS, ALS, and parkinsons. We have an MRI with contrast scheduled to finally see my entire spine correctly. Also an EMG scheduled of my left leg. Then if we are still wondering we are gonna do the lumbar puncture he said.
I also had 'hot flashes' in my left toes.. it felt like I was dipping my toes in a jacuzzi.. then the hot flashes started to move to the bottom of my foot, my heel, and my calf.. were almost up to my entire thigh with hot flashes now in left leg and foot.
My next appt and all this testing is going to be done on March 11th back at Mayo in Wisconsin. Because my Uncle had ALS and I've watched it take away someone slowly.. its really making these things happening with me hard to ignore...
I know that noone here is my doctor and only the docs are gonna be able to figure this out.
But I was hoping to have someone come here and just say they too went through this.. what was the outcome? Or their loved one presented this way etc.. for me its just not knowing that's bothering me so much.. while watching my body turn into one I dont recognize anymore.. I've never felt so physically limited in my life.. my left sided weakness is really becoming a problem..
So sorry for the length and thank you so much to those who get this far and listen to my venting!
Thanks all. God bless