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sdsyd

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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
 

PDaddy

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WOW!


That's the best thing I've read here on this forum! Congrats, and get better!

 

brendapals

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That is MARVELOUS news!

Best wishes for a speedy recovery-

Keep the faith always!
brenda
 

jskierz

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It is heartwarming to see some good news posted. Best wishes for a speedy recovery! Keep the rest of us in your prayers.
 

trying to stay positive

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So glad to hear good news! Thank you for sharing your story. You never know, it may just prompt someone to be tested and get great news like you.

Linda
 

elliekusa

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I am so happy for you! Hang in there!

Ellie
 

lovelily

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Cindy...This is wonderful news! :-D

take care of yourself!
lovelily
 

awieleba

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I am soooo happy for you. I know how you must of felt and how you feel now!

Take care of yourself and when you are healed, dont forget about als. God led you here for a reason and it may be to bring awareness and help to those that do have it. There is no better cause to work on or for than this diagnosed, in my opinion. ALmost every other disease has the hope of fighting it, not so in this case. I feel that we should do anything and everything for the disease and the people that have it

first things first, take care of yourself and feel soooooo blessed!

Take care,

april
 

crystalkk

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Cindy,
That is great news! I guess you are really happy that you decided to take that appointment.
 

rose

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Cindy, WHOO HOOO! that is wonderful news! Like PDaddy said, its the best I've read on this forum. I'm very happy for you and your family, please stay in touch and let us know how treatment goes for you :)
 

CindyM

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Hello my friend. This is the best possible thing that could happen! I hope the treatment works quickly so you can bet back to your life! Wonderful news! Cindy
 

swi71

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Cindy--
That's great news. Best wishes that all goes well with your treatment, and God bless you.
Sharon
 

Icanmanz

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So happy for you Cindy, and God bless you! Such good news! What can I say? All I can say is I am happy for you, and wish the same thing had happened to our departed loved ones. May God bless you, am praying that He keeps you healthy forever. Thanks for sharing this with us! Als is such a mysterious disease, and there is so much behind it. My late son and I we faced this damn monster, and lost. Maybe there was something that was misdiagnosed........."we'll never know!" The symptoms were there, and according to these docs it all led back to Als. My son was praying for it to be MG (Myasthenia Gravis), but these docs came up with this monster. Sometimes it keeps me wondering after reading some of these posts.. May God bless you, and keep us posted!

Irma
 

sdsyd

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Thanks guys! You all are so supportive and friendly! I wish I could hang around the boards just for the sense of community I experienced here, but I'm afraid if I did that I'd start thinking I had a misdiagnosis! I am so excited to start feeling better.

I wish you all the best. If I were to be an advocate for ALS in the future would you suggest that the money go to ALSA? Is there anywhere I can donate to keep this forum up and running>? If anyone has any OT questions that aren't answered here ( you guys help each other so well anyhow) please feel free to contact me at
[email protected]. For all the folks who are undiagnosed- PLEASE hang in there and don't give up hope. LISTEN to the people on this forum who actually have been diagnosed and keep searching for answers. It is so awful to have a mystery disorder that no-one can figure out.

Thanks again and again-
Love,
Cindy
 

CindyM

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Enjoy yourself, Cindy!
 
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