sdsyd
07-23-2008, 10:51 PM
Hi guys!!
We unbeilievably BACK from Mayo already. Drove through the night and pulled into the Mayo parking building and stayed for an entire day of testing- we got several of our appointments bumped up by waiting for others to be no shows, so cut a whole day off our stay.
GOOD NEWS!!!!!!! I do NOT - I REPEAT DO NOT have ALS. Haleluijah!! I do however have a very rare type of anemia that is highly treatable!! it is what my regular neuro suggested it was, but didn't do the appropriate tests to confirm it. Its called Megaloblastic Anemia. And it can cause a SLEW of neuro problems- even permanent damage, but luckliy mine was caught in time and the only problems with the EMG were in my thumb and toe. Anyhow, I lack an intrinsic factor that absorbs and stores B-12. Normaly your body can store about a 5 year supply of it. I had borderline low levels-for a 60 year old! LOL I am 35. And with the large RBC's- enough oxygen is not being circulated to my body.
So--- I will take ridicously high amounts of B-12, magnesium,folic acid and potassium and then in 6 weeks begin injections 1x a month. I should see improvement in 2-3 weeks and then in about 3 months I should be able to start rehabing my hand, forearm and triceps and spasticity and weakness should resolve.
Please add this to your lists of ALS mimics disorders. Our neuro there told us it is rare for a young person to have it. But it is a simple blood test to diagnose it. Could save someone a TON of worry- and left untreated gets worse and worse- sometimes can even lead to paralysis.
THANK YOU GUYS SO VERY MUCH FOR EVERYTHING> YOU ARE A BUNCH OF ANGELS HERE. I WILL CONTINUE TO PRAY FOR ALL YOU TO HAVE COURAGE<STRENGTH<PEACE <AND SLOWING OF PROGRESSION OF YOUR SYMPTOMS.
You have no clue how very helpful and supportive you have all been. I am going to stay on the forum for a week or so, and then I'm afraid I might not be back- I've got a lot of living to do- I might check every once in awhile to see how you good people are doing, but do consider myself a FALS. (friend of people with ALS) and a PWPALS. (prayer warrior for people with ALS)
Dan says thank you,too.
LOVE,
Cindy
We unbeilievably BACK from Mayo already. Drove through the night and pulled into the Mayo parking building and stayed for an entire day of testing- we got several of our appointments bumped up by waiting for others to be no shows, so cut a whole day off our stay.
GOOD NEWS!!!!!!! I do NOT - I REPEAT DO NOT have ALS. Haleluijah!! I do however have a very rare type of anemia that is highly treatable!! it is what my regular neuro suggested it was, but didn't do the appropriate tests to confirm it. Its called Megaloblastic Anemia. And it can cause a SLEW of neuro problems- even permanent damage, but luckliy mine was caught in time and the only problems with the EMG were in my thumb and toe. Anyhow, I lack an intrinsic factor that absorbs and stores B-12. Normaly your body can store about a 5 year supply of it. I had borderline low levels-for a 60 year old! LOL I am 35. And with the large RBC's- enough oxygen is not being circulated to my body.
So--- I will take ridicously high amounts of B-12, magnesium,folic acid and potassium and then in 6 weeks begin injections 1x a month. I should see improvement in 2-3 weeks and then in about 3 months I should be able to start rehabing my hand, forearm and triceps and spasticity and weakness should resolve.
Please add this to your lists of ALS mimics disorders. Our neuro there told us it is rare for a young person to have it. But it is a simple blood test to diagnose it. Could save someone a TON of worry- and left untreated gets worse and worse- sometimes can even lead to paralysis.
THANK YOU GUYS SO VERY MUCH FOR EVERYTHING> YOU ARE A BUNCH OF ANGELS HERE. I WILL CONTINUE TO PRAY FOR ALL YOU TO HAVE COURAGE<STRENGTH<PEACE <AND SLOWING OF PROGRESSION OF YOUR SYMPTOMS.
You have no clue how very helpful and supportive you have all been. I am going to stay on the forum for a week or so, and then I'm afraid I might not be back- I've got a lot of living to do- I might check every once in awhile to see how you good people are doing, but do consider myself a FALS. (friend of people with ALS) and a PWPALS. (prayer warrior for people with ALS)
Dan says thank you,too.
LOVE,
Cindy
