Sunshine94
New member
- Joined
- Feb 28, 2018
- Messages
- 5
- Reason
- Learn about ALS
- Country
- US
- State
- SC
- City
- Anderson
First of all I am 41 with 2 amazing kids and been married to the love of my life for almost 25 years! My life is wonderful even though the past year has been tough.
My symptoms started with shortness of breath or at least that is what slowed me down to notice. I was hospitalized 2 times for what they thought was pneumonia but then realized over lots of test...MRI, CT, labs and spirometry that this is a neuromuscular issue.
I was started on 3 liters of oxygen continuous flow in March. My pulmonary doctor sent me to Duke for a 2nd opinion and the pulmonary doctor there confirmed that this is a neuromuscular disease we are dealing with and that my actual lungs are fine but the muscles around my diaphragm are very weak.
I was sent to a neurologist that was quite the jokester but I needed someone who was seriously going to be aggressive and figure out some treatment. He said he could not do a EMP of my diaphragm and said that my left leg weakness was coming from the lack of oxygen. This was 8 months ago. Move forward to today:
My breathing on 3 liters seems to maintain but I do have random events when I feel air hungry and I seem to start to pant again. It can be walking to the car or laying in the bed. I am not sure what triggers it maybe activity but I do notice it happening when I am sitting still sometimes as well. (MAXIMUM INSPIRATORY PRESSURE: 70% of predicted / MAXIMUM EXPIRATORY PRESSURE: 17% of predicted)
My left leg continues to be weak. My foot drags a little and I pick it up a little higher to not let it drag. Both feet tingle and feel like pins in them especially at night when I lay down. My calf muscle in my left leg cramps.
My left shoulder has recently become weak.. not my hand just to raise my arm or even when I am typing that shoulder feels weak. My shoulder muscle seems to cramp some as well.
My tongue feels like its a little swollen almost like its too big for my mouth but I don't choke. My mouth gets tired chewing or talking for long periods of time. I seem to enjoy softer easier to chew food better than steak or chicken.
I have a few things that are just aggravating...my fingers twitch, my words don't always come out right, I am so emotional either break down and cry or just snap which I cant stand and feel so bad about after the fact.
I have a headache about 4 days a week... possibly from lack of oxygen. I don't hurt (excepts for the headaches or muscle cramps) but I am exhausted. Everything feels so tired but not like I need a nap tired its more like hold your pee because you don't feel like walking to the bathroom and taking your pants down tired. Its the how dirty is my hair because I am not sure I have the strength to raise my arms to wash it.... but then when you do... you are short of breath and laying across the bed just to get the strength to put clothes on.
My walk has this lovely drag to it and my husband and kids hold onto me so I don't fall. Plus I have my oxygen tank that i use as a walker for my right side. I no longer drive because to get out and walk wears me out that I cant drive home.
My husband sees changes in me over the past year and is scared.. I try to hide the changes so he does'nt worry but they are too big now. I was excited when I thought I would be able to get a portable concentrator however that lasted for about 2 weeks of trying but the alarm continue to go off because my muscles where not strong enough to trigger the pulse. So back to the tanks... which is fine its my walker too so I guess it was meant to be.
I guess after all that blah blah blah.... I just would like to know it there anything I can be doing to make any of this easier and also I have not thought anything about ALS because I felt like it normally doesn't start with the muscles around your diaphragm. Both of my pulmonary doctors have mentioned ALS and I am currently waiting on my appointment to either MUSC or Duke (whoever can see me the soonest).
I just want to do anything I can to be proactive and positive and this waiting game of not knowing what comes next will drive you crazy!
Any advice is treasured and appreciated.
Thank you!!
Smiling Anyway!!
My symptoms started with shortness of breath or at least that is what slowed me down to notice. I was hospitalized 2 times for what they thought was pneumonia but then realized over lots of test...MRI, CT, labs and spirometry that this is a neuromuscular issue.
I was started on 3 liters of oxygen continuous flow in March. My pulmonary doctor sent me to Duke for a 2nd opinion and the pulmonary doctor there confirmed that this is a neuromuscular disease we are dealing with and that my actual lungs are fine but the muscles around my diaphragm are very weak.
I was sent to a neurologist that was quite the jokester but I needed someone who was seriously going to be aggressive and figure out some treatment. He said he could not do a EMP of my diaphragm and said that my left leg weakness was coming from the lack of oxygen. This was 8 months ago. Move forward to today:
My breathing on 3 liters seems to maintain but I do have random events when I feel air hungry and I seem to start to pant again. It can be walking to the car or laying in the bed. I am not sure what triggers it maybe activity but I do notice it happening when I am sitting still sometimes as well. (MAXIMUM INSPIRATORY PRESSURE: 70% of predicted / MAXIMUM EXPIRATORY PRESSURE: 17% of predicted)
My left leg continues to be weak. My foot drags a little and I pick it up a little higher to not let it drag. Both feet tingle and feel like pins in them especially at night when I lay down. My calf muscle in my left leg cramps.
My left shoulder has recently become weak.. not my hand just to raise my arm or even when I am typing that shoulder feels weak. My shoulder muscle seems to cramp some as well.
My tongue feels like its a little swollen almost like its too big for my mouth but I don't choke. My mouth gets tired chewing or talking for long periods of time. I seem to enjoy softer easier to chew food better than steak or chicken.
I have a few things that are just aggravating...my fingers twitch, my words don't always come out right, I am so emotional either break down and cry or just snap which I cant stand and feel so bad about after the fact.
I have a headache about 4 days a week... possibly from lack of oxygen. I don't hurt (excepts for the headaches or muscle cramps) but I am exhausted. Everything feels so tired but not like I need a nap tired its more like hold your pee because you don't feel like walking to the bathroom and taking your pants down tired. Its the how dirty is my hair because I am not sure I have the strength to raise my arms to wash it.... but then when you do... you are short of breath and laying across the bed just to get the strength to put clothes on.
My walk has this lovely drag to it and my husband and kids hold onto me so I don't fall. Plus I have my oxygen tank that i use as a walker for my right side. I no longer drive because to get out and walk wears me out that I cant drive home.
My husband sees changes in me over the past year and is scared.. I try to hide the changes so he does'nt worry but they are too big now. I was excited when I thought I would be able to get a portable concentrator however that lasted for about 2 weeks of trying but the alarm continue to go off because my muscles where not strong enough to trigger the pulse. So back to the tanks... which is fine its my walker too so I guess it was meant to be.
I guess after all that blah blah blah.... I just would like to know it there anything I can be doing to make any of this easier and also I have not thought anything about ALS because I felt like it normally doesn't start with the muscles around your diaphragm. Both of my pulmonary doctors have mentioned ALS and I am currently waiting on my appointment to either MUSC or Duke (whoever can see me the soonest).
I just want to do anything I can to be proactive and positive and this waiting game of not knowing what comes next will drive you crazy!
Any advice is treasured and appreciated.
Thank you!!
Smiling Anyway!!
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