Lehigh Valley (PA) MDA Clinic

[Guest guest]

Dear Listmates,

Yesterday I received a call from the MDA coordinator at the above

location. She asked if there was anything they could do.

I said that there is a pressing need for a local neuro to staff that

clinic. I said that I do not go there anymore, one of the reasons being

an eight-month wait for an appointment. Also, it is almost impossible to

get the neuro if one has an urgent question or problem.

I said that those with mito face a particularly difficult situation

because so many doctors know little or nothing about the disease.

I also suggested that the MDA fund post-doctoral fellowshps for

clinicians. They fund research now, of course, but we need expert

clinicians badly. She said she had not thought of that, and that she

would present the idea.

She also said that the MDA Clinic in town, PA, has many problems,

and that they are trying to get some local neurologists to staff it..

Maybe things will improve.

Take care.

S.

Pennsylvania .

[Guest guest]

Branda

The national MDA ran a conference on mito and another on the uses of CoQ10

for their clinic directors last year. Hopefully the ones who know nothing

went.

laurie

> From: BDS31@...

> Reply-To:

> Date: Thu, 2 Sep 2004 13:05:11 -0400

> To: , adultmito

> Subject: Lehigh Valley (PA) MDA Clinic

>

> Dear Listmates,

> Yesterday I received a call from the MDA coordinator at the above

> location. She asked if there was anything they could do.

> I said that there is a pressing need for a local neuro to staff that

> clinic. I said that I do not go there anymore, one of the reasons being

> an eight-month wait for an appointment. Also, it is almost impossible to

> get the neuro if one has an urgent question or problem.

> I said that those with mito face a particularly difficult situation

> because so many doctors know little or nothing about the disease.

> I also suggested that the MDA fund post-doctoral fellowshps for

> clinicians. They fund research now, of course, but we need expert

> clinicians badly. She said she had not thought of that, and that she

> would present the idea.

> She also said that the MDA Clinic in town, PA, has many problems,

> and that they are trying to get some local neurologists to staff it..

> Maybe things will improve.

> Take care.

> S.

> Pennsylvania .

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Hi

I go to the Lehigh Valley MDA in Pa. and there is only ONE Neurologist there in

the MDA Clinic. This is why it is taking so long to get appts. there. They are

definitely understaffed. And forget about getting in touch with the Dr. if you

have a problem, b/c it won't happen.

There was a group of us talking at the conference late one night and I suggested

that maybe MDA could possibly pay for some of a future doctors schooling if they

would specialise in Metabolic Medicine. And then corrected me and said

the MDA would have to fund post-doctoral fellowships for the clinicians. MDA

puts so much money into research( and yes, we all want a cure) but there are no

doctors to specialise in the disease. We have too many people suffereing b/c

they can't find a Metabolic doctor to care for them. It seems that there are

more Peds. Docs than there are Docs for Adults.

That night we all had our thinking caps on.!! I am so glad that suggested

this to the MDA Coordinator when she called. Thank You !!

I also got a phone call from the coordinator of the Lehigh Valley MDA. I was

alseep(what's new?) when they called but my husband gave me the message. I am

sorry that I missed their call. They call every so often to see if there is

anything we need or if they can help in any way. At least they are calling for

suggestions and to help, now lets hope they can change a few things to make it

better. I first went to this MDA Clinic when I was first dx'd in 1995, but

stopped going after 2 or 3 visits b/c of the residents. I wasn't treated very

nicely( and that is sugar coating it)

I have since returned to the Clinic b/c of no where else to go for treatment.

The doctor there at the town MDA Clinic is a very nice competent Neuro but

she has her hands full. She also see Mito patients in Philly, and also sees ALS

patients in the Philly Clinic. She really needs help.!!

Ann-Marie

Lehigh Valley (PA) MDA Clinic

>

> Dear Listmates,

> Yesterday I received a call from the MDA coordinator at the above

> location. She asked if there was anything they could do.

> I said that there is a pressing need for a local neuro to staff that

> clinic. I said that I do not go there anymore, one of the reasons being

> an eight-month wait for an appointment. Also, it is almost impossible to

> get the neuro if one has an urgent question or problem.

> I said that those with mito face a particularly difficult situation

> because so many doctors know little or nothing about the disease.

> I also suggested that the MDA fund post-doctoral fellowshps for

> clinicians. They fund research now, of course, but we need expert

> clinicians badly. She said she had not thought of that, and that she

> would present the idea.

> She also said that the MDA Clinic in town, PA, has many problems,

> and that they are trying to get some local neurologists to staff it..

> Maybe things will improve.

> Take care.

> S.

> Pennsylvania .

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>