Medical Record Sent

[lovelily]

Hello Everyone!

I just spoke with my neurologist's office, and was told that all my medical records have been faxed over to the office of 'Doctor Jennifer Michaels' at 'UMDNJ' University Hospital in Newark, New Jersey.

Horray! I am hoping I will be accepted as a patient, and she will be able to sort things out for me, one way or another.

I don't know how long it take to review a patients history and set an appointment. Perhaps this will be the beginning of solving my mystery.

Take care, all!

lovelily

 

[bluebottle]

Lets hope so and fingers crossed that you get a call/letter real soon. Being in this period of flux is not a good place to be so praying for a quick one for you.

 

[lovelily]

Thanks bluebottle for your kind response!

take care
lovelily

 

[rose]

Lovelilly, that is really encouraging! Here's hoping it won't be all that long before they're able to schedule you. Very good news

 

[lovelily]

Hi Rose!

This University is different than the one I went to in Philadelphia. I just called with my referral and they scheduled an appointment. This one you need to meet a certain criteria before they let you in.

I have my prayers going. I am excited because maybe they will add the missing pieces to my puzzle.

I hope you are doing well!

take care
lovelily

 

[crystalkk]

lovelily,

I hope you get some kind of answers, hopefully it not ALS. In the other post you said you had a series of strokes, I read about a disease that you do have strokes or stroke like smyptoms. I will try and find it again.
In your other post you mentioned that you started with bone pain in your shins, this is something that I am experiencing now.

What University in Philadelphia did you go to....I am from Philly.
I will keep you in my prayers.....

 

[lovelily]

cystalkk,

It was 'Thomas Jefferson University'. I saw Dr. Enrica Arnaudo. She did not do an Emg because I was on 'coumadin' at the time. I was diagnosed with 'muscle weakness'.

She thought that I may have had a mitochondria disorder, but the 2nd biopsy did not show 'red ragged fibers' either.

take care
lovelily

 

[crystalkk]

Hi lovelily,

The disease that I was thinking about that has strokes or stroke like symtoms that i was refering to is a mitochondria disorder. I beleive it is MELEAS. But your biopsy ruled it out. I knew I read it somewhere about strokes being a symtom and researched it a little more last night.

The other thing that is part myopathy and part nuerogenic is Inclusion Body Myositis, did they rule that out as well.

Hang in there,

 

[lovelily]

Hi Crystal....They did consider MELAS and I thought I had the genetic testing for that, but when I looked at my records they checked me for some disorder that is linked to SIDS because hypoglycemia runs in my family, and I passed it to my children. I will ask about the 'MELAS' if I get to see this doctor.

As far as 'IBM' you can ask Wright because I private messaged my muscle biopsy to him. He would know better about some of the findings. He can disclose anything he likes....if he wants. I have nothing to hide.

Thank you for your concern

take care
lovelily

 

[lovelily]

Hi Crystal....I reread my post, and at the end I sounded a lit accusatory. It came out wrong. Sorry! I hope I didn't offend you.

take care
lovelily

 

[crystalkk]

Lovelily,

You didn't offend me. I am always trying to find other things than ALS. I am undiagnosed and it is very frustrating process.

 

[lovelily]

Hi Crystal....

Thanks.....MELAS is a nasty mitochondrial disorder. I think if I had to flip a coin it would get tossed in the garbage.

take care
lovelily

 

[crystalkk]

lovelily,

I would like to toss all of these diseases and disorders in the garbage.

 

[fiddleplayer51]

lovelily,
I finally read all your posts and see that you've been waiting quite a long time for a diagnosis. I just want you to know that I'm thinking of you and hoping that this week brings the call that says you have an appointment with Dr. Michaels so that hopefully you can begin to get some answers.
I think the medical knowledge you've gained through all of this is phenomenal, although it's a heck of a way to learn!
Good luck to you and best wishes for whatever lies ahead.
Jane

 

[lovelily]

Good Morning, fiddleplayer!

It's nice to meet you. Thank you for you kind words and concern for me! I don't know that I have but a thimble amount of information.

Yes, I am hoping for a phone call soon. I will post as soon as I know.

Are you diagnosed with this disease? I hope not. If so, I pray that it will be very slow moving.

The best to you, as well!

take care
lovelily