Old 09-14-2015, 09:28 AM #1 (permalink)
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Default Newly diagnosed

Hi all! My name is Paula. I was recently diagnosed with MND and Dr's say all test point toward ALS. He said he can't give me a definitive answer right now because I can't get an MRI due to a titanium plate in my neck. I have other symptoms such as numb hands and arms that doesn't necessarily go with ALS. SOOO, I have to wait until November to see how far the disease has progressed. GAAAHH! So frustrating.
I was very active before I got this. Now I have to rely on a cane and walker. I worked in law enforcement for 20 years. Had to put in my resignation because I no longer can do the job! I'm going to aquatic physical therapy 3x a week and make someone take me walking the other days. I have already gotten my 2nd opinion now just waiting on results from the first.
Thanks for listening er reading my rambling.
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Old 09-14-2015, 03:00 PM #2 (permalink)
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Hoping for the best for you
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Old 09-14-2015, 03:05 PM #3 (permalink)
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Welcome, PFAYE. Let us know how it goes.
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Old 09-14-2015, 05:43 PM #4 (permalink)
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Hi Paula,

Hoping for the best for you!

Take care,
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Old 09-14-2015, 09:10 PM #5 (permalink)
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Paula, I have two titanium plates in my neck and have safely had MRIs. You might want to check that. Hoping for the best for you too!
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Old 09-14-2015, 09:59 PM #6 (permalink)
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Hold out hope it is not MND. But if it is you will receive great help and support here.
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Old 09-15-2015, 11:48 AM #7 (permalink)
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Welcome to the group
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Old 09-16-2015, 02:02 AM #8 (permalink)
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Default Re: Newly diagnosed

Paula, are you seeing someone at the Baylor or Methodist neurology clinics? Where you are, those would be my two stops. Larry had chest MRIs with a titanium valve, very common. Titanium is not magnetic. This is an indication you might not be seeing the best people?

Best,
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Old 09-17-2015, 12:52 PM #9 (permalink)
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Default Re: Newly diagnosed

Good information from Laurie. An MRI is an important piece of diagnosis. I hope with all my heart you do not have ALS. This time of limbo can be particularly tough. I'm sorry you're going through this and I hope you get answers soon.
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Old 09-17-2015, 06:07 PM #10 (permalink)
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Hi Paula,

Sad to hear of all these changes impacting you, your work and mobility. My heart goes out to you. I hope it will not be ALS but something possibly more treatable. In any case, I hope to keep in touch on here- I am also newly diagnosed. Wishing you strength of your journey.

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Old 09-21-2015, 12:56 PM #11 (permalink)
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Thank you all for the welcome. My plate is located at c4,c5,c6. I've had 3 Dr's tell me that due to the plate in my neck it produces a glare and the findings are not sufficient. I am going to the neurosurgeon that put the plate in place along with my mylegrams and hope that maybe my plate shifted. Fingers crossed. I've had two Drs say MND and one of them said possible ALS.
I have atrophy in both arms, shoulders, chest, shoulder blades are doing the wing thing. I am getting atrophy in my knees, legs and feet. I have muscle cramps and the muscles fluttering (which wakes me up). I was very active before all of this started. I will keep y'all informed.
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Old 09-21-2015, 01:27 PM #12 (permalink)
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Hello Paula,

I am sorry for all that you have been going through. Waiting, and more waiting, is so difficult. I will be thinking of you, and sending you all my best wishes. I am glad that you've come here to the Forum. The people here are so compassionate and caring...and so very knowledgeable. Know that we are thinking of you, and please be sure to get back to us as you learn more.

Sincerely,
Laura
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Old 09-21-2015, 06:31 PM #13 (permalink)
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big welcome paula, post often there's plenty of support here. love ya chally
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Old 09-29-2015, 09:27 AM #14 (permalink)
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Paula, all the best for the November appointment.
God bless, Janelle x
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Old 09-29-2015, 07:05 PM #15 (permalink)
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Hi Paula,
> I've had two Drs say MND and one of them said possible ALS.

ALS is one form of MND. In Europe they simply say MND.
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