Rejected

[lovelily]

Hello good people.

Well my title says it all. I am not a candidate to be seen by this doctor. :? I have no clue yet, as to why. I called my neurologists office and he is suppose to call me today.

I told the receptionist since my last visit (2months) that the top of my right hand is beginning to atrophy.

I had a good cry and then tried to get on with my day. Thanks for reading.

take care
lovelily

 

[rose]

Nooooo! I don't understand. Who turned you down? I am so sorry. biggest ((hugs)) possible to you.

Here is Dr Charlotte Sumner's phone number again: 410 614 0093. (down at Hopkins) If you want to call her, you'll probably have to leave a message, that is pretty much standard. When her assistant returns your call, you can ask what you would need as a referral to get in to her. As this doctor's field of research includes inherited neuromuscular disease, I think you'd be a good candidate.

Here's sending you another ( ((hug)) ) !

 

[awieleba]

Hi lovelilly,

that is awful! You wait all this time and this? These people just dont understand what we go through!
I think you should call Rose's doctor asap!

april

 

[lovelily]

AAh....thank you Rose and April. The neurologist's office called to day, but I did not speak with the doctor. He just made an appointment to see me on September 11th.

I cannot understand 'any' of it. If someone has a biopsy of total 'denervation' and then one 'EMG' of any another body part, you think at least they would be curious.

Thanks Rose for the phone #. When I went into Philadelphia....I only needed a referral. No guards standing at the door. Next referral maybe I should take the trip.

I think I may request an 'EMG' while visiting the neuro. He is an expert. Thanks for your sympathy....It means a lot.

Goes to show all those waiting for some type of diagnoses. Even when you 'have' denervation and atrophy of body parts, ALS does not jump off the page for most doctors.

Take care
lovelily
ps....I am sure the other biopsy that showed myopathy is confusing everything.

 

[CindyM]

Hi Lily- I hope you get to the bottom of this soon! regards, Cindy

 

[lovelily]

Hi Cindy....Me too! Thanks so much for your concern!

take care
lovelily

 

[safari101]

Loviely

I just registered here. Hang in there and do not give up.

God Bless,

Safari101

 

[lovelily]

Hello Safari....I like your user name! Welcome to the forum. I really hope you don't have this disease, but like of lot of us here I guess you are having trouble and searching for an answer.

Thanks for lifting my spirits and giving me a kind word to carry on! You take care.

lovelily

 

[awieleba]

hey~ have went to a docter that does myopothy? maybe you should look into a specialist in that area?
they can rule it in or out maybe?

bless you, bless you, bless you!

april

 

[tmasters]

Lovelily,

I know how frustrating it can be to play the waiting game with doctors. Hang in there and try to be patient and not think about it. Try not to think of pink elephants.

Keep the faith,
-Tom

 

[crystalkk]

Lovelily,

What kind of specialist is he? I can't believe you waited all that time!

 

[lovelily]

Hello Tom, Crystal and April...

These people are affiliated with the muscular dystrophy association and neuromuscular disease. So I, my doctor, thought one way or another they would take a look.

Guess not. :? I have #'s from other kind people on the forum. And, I can always go back to the hospital in Philadelphia PA. They were very kind, but thought I was coming a far distance from my home, and to look to NYC.

Neurologist appointment on 9-11....I will take it from there.

take care
thank you all
lovelily

 

[elliekusa]

April,

I am so sorry you are dealing with so much bureaucracy. You are in my thoughts and I am sending hugs!

Ellie

 

[crystalkk]

Lovelily,

If you decide to come back to Philly, Maybe you should try the University of Penn instead of Jefferson
(I believe you said you went to Jeff). I started with Jefferson also they do not have an ALS specialist or work with the MDA.

I see Dr McCluskey he is the director of the ALS Clinic at Pennsylvania hosp. ( a division of university of Penn) He used to be at Penn but they opened the clinic at Pennsylvania Hosp which is only a short distance from me.

The University of Penn is also MDA affiliated. They have a have a very big nuero department.

 

[lovelily]

Dear Crystal....when I went to Thomas Jefferson University, You only needed a referral from your doctor. That was an easy way to go. Is U.P. that way or do they want the doctor to send ahead records?

I really felt like a pile of paperwork instead of a human being. Thanks for your kindness!

God be with you.
take care
lovelily