Desert Woman
08-07-2007, 01:20 PM
Hi friends,
I'm so glad this forum is still here!
I haven't been here for ages, but I did want those who remember me to know that I definitely do NOT have ALS or Lou Gerhig's disease. Thank God above!
What started out in 2000 as a L5-S1 fusion and then in 2003 the hardware removal turned into a nightmare that couldn't be diagnosed.
It started in 2002 with a feeling in my hand when I would write - it felt like the information in my brain didn't go to my hand. It was a strange feeling. Then in 2003 I started to have a weird feeling in my throat. It was like a mucous ball was always in the back of my throat and I had a shallow cough along with it. Then I started to notice that my legs were acting weird. It seemed that my muscles were really tight and I just attributed that to my back surgery and the fact that pain had decreased my walking, and therefore the side effect of having my muscles not as strong.
Well, long story short is that I went to an ENT who looked down my throat with a camera and he said there was NO way that I had a neurological disease affecting my voice - that it was ACID REFLUX that had almost burned my vocal chords.
Then, my PCP did a blood test that showed that I had a severe problem BINDING vitamin B12..........hmmmm, why didn't the Mayo Clinic pick up on that instead of telling me that I had ALS????!!!!!
So, I get 1 ml of B12 injections twice a week now and I am almost walking NORMALLY!!! Isn't that a FREAKING MIRACLE?????!!!!!!!!!!
I'm seeing an endocrinologist soon to have a total blood workup done and then to be put on a schedule to give myself the b12 shots daily.
This entire neurological disease that was affecting my walking due to muscle tightness (spasticity) may have turned out to be caused by two things: acid reflux (stress) and the lack of binding of B12 in my stomach. Maybe the two things are related.
I'll find out - that is for sure! I have been through so much these last few years and I've really lived in health-hell, and found that you have to be your own advocate! It is exhausting.
But, every time I feel sorry for myself I give myself a swift kick in the *** so to speak and give thanks to my dearest God that I do not have ALS.
Hope this post finds you all well. Maybe my story will help someone else.
Lots of love and strength to you!
Karen
I'm so glad this forum is still here!
I haven't been here for ages, but I did want those who remember me to know that I definitely do NOT have ALS or Lou Gerhig's disease. Thank God above!
What started out in 2000 as a L5-S1 fusion and then in 2003 the hardware removal turned into a nightmare that couldn't be diagnosed.
It started in 2002 with a feeling in my hand when I would write - it felt like the information in my brain didn't go to my hand. It was a strange feeling. Then in 2003 I started to have a weird feeling in my throat. It was like a mucous ball was always in the back of my throat and I had a shallow cough along with it. Then I started to notice that my legs were acting weird. It seemed that my muscles were really tight and I just attributed that to my back surgery and the fact that pain had decreased my walking, and therefore the side effect of having my muscles not as strong.
Well, long story short is that I went to an ENT who looked down my throat with a camera and he said there was NO way that I had a neurological disease affecting my voice - that it was ACID REFLUX that had almost burned my vocal chords.
Then, my PCP did a blood test that showed that I had a severe problem BINDING vitamin B12..........hmmmm, why didn't the Mayo Clinic pick up on that instead of telling me that I had ALS????!!!!!
So, I get 1 ml of B12 injections twice a week now and I am almost walking NORMALLY!!! Isn't that a FREAKING MIRACLE?????!!!!!!!!!!
I'm seeing an endocrinologist soon to have a total blood workup done and then to be put on a schedule to give myself the b12 shots daily.
This entire neurological disease that was affecting my walking due to muscle tightness (spasticity) may have turned out to be caused by two things: acid reflux (stress) and the lack of binding of B12 in my stomach. Maybe the two things are related.
I'll find out - that is for sure! I have been through so much these last few years and I've really lived in health-hell, and found that you have to be your own advocate! It is exhausting.
But, every time I feel sorry for myself I give myself a swift kick in the *** so to speak and give thanks to my dearest God that I do not have ALS.
Hope this post finds you all well. Maybe my story will help someone else.
Lots of love and strength to you!
Karen