SUNNY1414
Member
- Joined
- May 22, 2016
- Messages
- 22
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- MO
- City
- St Louis
Hello! I have been incredibly grateful for the wealth of information I have been able to obtain from this forum. I want to say THANK YOU to all who moderate and participate here.
I am a 43 yr old female that started with some buzzing and twitching back on February. I didn't think anything of it.
By April, it had become so pronounced that I made my first ever visit to an ER. They dismissed it and I decided to get a neurology appointment.
The only significant finding at that time was damage to my peroneal nerve which was thought to be due to some scoliosis.
I was elated and left being told it was benign fasciculation syndrome - although I did have highly elevated b6 levels.
Fast forward to three weeks ago when I started having terrible cramping in my right dominant hand. I had also been having some cramping in my lower front right leg where the peroneal nerve is. I had also had some ankle weakness in recent months on the same side.
It was when the cramping started that I noticed the atrophy of my right bicep which has always been my dominant arm. The right hand that is cramping also now has a smaller Palm muscle. I actually saw the first tiny fasciculations in that palm last night.
I am still able to grip but it is weakening and painful.
I tried lifting a weight yesterday and cannot lift without struggling. Today I am sore on the right side where all the cramping has been as a result of trying to lift a simple dumbbell.
I have an appointment with the neuro Tuesday to have a new NCV and myelogram.
I am actually eerily calm as I have already gone through enormous anxiety to this point. I am sure I am in a pre shock phase. I have the greatest husband I could have ever asked for and two sweet 6 year old twin girls.
I sat down with my husband this morning who has been so over the top positive and in denial. I asked him to accept that this may very well be ALS and he fell apart and cried for two hours.
He is much older than I am and probably scared beyond recognition of how he will raise our girls without me if it is what it seems.
I have resolved myself to stay strong for my family. I want to show my girls how to face life in all its ups and downs. It isn't going to be easy if I start to lose functions to maintain my motherhood and that, above all, scares me. I don't know how to teach my girls to accept this. I feel like life has just been put on Mach three overdrive to get it all in if we face this terrible diagnosis.
On a side note, I had a non contrast MRI which came back negative for MS.
I welcome any support or feedback you can give and deeply appreciate anyone's valuable time who posts in reply.
Blessings and peace.
I am a 43 yr old female that started with some buzzing and twitching back on February. I didn't think anything of it.
By April, it had become so pronounced that I made my first ever visit to an ER. They dismissed it and I decided to get a neurology appointment.
The only significant finding at that time was damage to my peroneal nerve which was thought to be due to some scoliosis.
I was elated and left being told it was benign fasciculation syndrome - although I did have highly elevated b6 levels.
Fast forward to three weeks ago when I started having terrible cramping in my right dominant hand. I had also been having some cramping in my lower front right leg where the peroneal nerve is. I had also had some ankle weakness in recent months on the same side.
It was when the cramping started that I noticed the atrophy of my right bicep which has always been my dominant arm. The right hand that is cramping also now has a smaller Palm muscle. I actually saw the first tiny fasciculations in that palm last night.
I am still able to grip but it is weakening and painful.
I tried lifting a weight yesterday and cannot lift without struggling. Today I am sore on the right side where all the cramping has been as a result of trying to lift a simple dumbbell.
I have an appointment with the neuro Tuesday to have a new NCV and myelogram.
I am actually eerily calm as I have already gone through enormous anxiety to this point. I am sure I am in a pre shock phase. I have the greatest husband I could have ever asked for and two sweet 6 year old twin girls.
I sat down with my husband this morning who has been so over the top positive and in denial. I asked him to accept that this may very well be ALS and he fell apart and cried for two hours.
He is much older than I am and probably scared beyond recognition of how he will raise our girls without me if it is what it seems.
I have resolved myself to stay strong for my family. I want to show my girls how to face life in all its ups and downs. It isn't going to be easy if I start to lose functions to maintain my motherhood and that, above all, scares me. I don't know how to teach my girls to accept this. I feel like life has just been put on Mach three overdrive to get it all in if we face this terrible diagnosis.
On a side note, I had a non contrast MRI which came back negative for MS.
I welcome any support or feedback you can give and deeply appreciate anyone's valuable time who posts in reply.
Blessings and peace.