What would Mayo Clinic do for me? Need more info about it.

[Guest guest]

Would you to be able to help me out what would the Mayo Clinic do for me? I live

in Port ST , Fl . I just think that I might have CMT but don't know what

type of CMT do I have. I am waiting for my turn to go to MDA office since one

year but I haven't heard from MDA so far. So , that is why, I decided to get

more information about Mayo Clinic. Is Mayo Clinic the same as MDA?

Thanks,

Zenaida Astone

[Guest guest]

Zenaida,

I saw Dr. Klein at Mayo Clinic in Rochester, MN. As Gretchen says,

the doctors there are top notch, and Dr. Klein is the CMT expert. That is why

my doctor referred me to him. They will keep searching until they get to the

real problem. Following is an e-mail I sent to several days ago when he

was questioning his diagnosis. I hope this will help you understand why the

doctors at Mayo are so amazing. I wouldn't know what I was dealing with today

if I hadn't gone there 4 years

ago.

, I don't have CMT either, even though that was my original diagnosis10

years ago. My primary neurologist after having me for a patient for 5 years,

began to see progression that wasn't consistent with that diagnosis. He referred

me to Mayo Clinic to the CMT " guru " who, after a 20 minute exam, knew I didn't

have CMT. In his quest to get to the bottom of my illness and after 6 days of

grueling tests, blood work, and finally a nerve and a muscle biopsy, a diagnosis

of Distal Predominant Motor Neuronopathy (a motor neuron disease) was made. It

is a close cousin to Lou Gherig's Disease, but not

fatal. I wear AFOs, walk with a cane or a rolling walker and sometimes need a

wheelchair. I am 48 years old and of normal weight. My worst symptoms are the

extreme weakness in my hands and in my legs below the knees. My balance is

awful. Overall, I am very healthy and am managing my illness. I have been on

disability for 5 years. I like to be a part of this forum because of the

commonalities that I share with so many, even with others here who do not have

CMT. I wish you the best with your quest to find the truth.

[Guest guest]

,

Thank for the information! So, I am having these feelings that I should go there

also. I will let you know what will happen next.

Thanks for your sharing about your symptoms but surprised me that you didn't

have CMT. I found it odd. It could happen to me that I don't know if I have CMT

or not but the foot doctors said that I might have one because of my symptoms

are similar to CMT patients. The EMG and muscles biopsy came out negative. Just

that I had a very slight abnormal of EMG test on my right leg about 5 years ago.

My symptoms are getting worser each year but I didn't give up my

faith with GOD. No matter what's happening to my health. Longsuffering is good

till the end. The Victory will be mine and yours and others if you guys live for

God!

So anyway, thanks again. I will starting to call Mayo Clinic very sooner at

ville, Florida since I live in that state though.

God bless,

Zenaida Astone

[Guest guest]

Zenaida,

I went to the Mayo in Arizona and had tests - all repeats - they could not

suggest anything new but their Neuro Dept was very in depth. Hope you have the

same experience.

Joyce