Update

[Guest guest]

Hi everyone, I missed Monday's chat cause I was not up

to par. Right now I am having more bad days than good.

But I am still thankful for what I am able to still do

and realize that it could be worse. I see alot has

happened with you all. Laurie, Kristie, etc. So

to all of you, I hope you all better times. I went to

my neuro doc on Thurs. He said he sees the disease

progressing in me. He want's me to go and get a

consultation and be seen at Columbia Pres. Hospital.

He suggested Dr. S. DiMauro, but I found out he is not

accepting new patients. Then I tried Dr. Cohen, no

good either. I tried general info. at Columbian Presp.

They couldn't help me with a mito doc. They didn't

have any listed on their referral list. I went on line

and found a Dr. Hirano or somthing like that. Only he

is not there alot. So I have to try and call in June

and see if he has a schedule. Can anyone suggest a

good mito doc to look me over. I have mito as you all

know. Just that my neuro wants me to at least have one

or two visits with a specialist. I live on Long Island

in N.Y. Also I found out that I too am having a

problem with my blood pressure. It is jumping way to

much, from high to low all in the same day. He also

recommends that I go for a scooter to take stress of

the energy I am using trying to not use the wheel

chair. My breathing has gotten worse, and there is

nothing he said he could do for that. Also that since

I am having head issues like brain fog or similar to

TIA's he wants me to go to hospital and try to get him

while it is happening. He feels my body is

intoxicating itself. He needs to look into it further.

Also he has scheduled some other tests again. The

recent test's he did on the biopsy I had in Jan. only

show that I have a mitochondrial disorder and probably

Melas. It was a very disappointing visit. Back to

testing further etc. because of my down ward trend

again. So if any one can suggest what I can do about a

mito doc. let me no. Other wise I will continue with

my neuro. Thanks to you all, and hopefully see you on

the chat group Monday.

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