Re: Dr. Sims MGH

[Guest guest]

Heidi,

I hope you and both get the rest you need. I am glad

is out of the hospital. I am glad your appointment with Dr. Sims

went relatively well. It sounds like she knows her stuff. It is nice to

get your opinion of her, as I am seeing her in June. It sounds like she

had some good advice, even if some of it came off a little " different " .

It is good to know ahead of time that she can be like that. I tend to

take some doctor visits to personally unless I know that they will be a

certain way!

Take care and I hope you can get your rest and get other things

done that you need to.

Smiles,

a K.

On Mon, 25 Apr 2005 06:23:44 EDT mom2colemankidz3@... writes:

Hi All

I had my appt with Dr. Sims, neurogeneticist at MGH. I had heard mixed

reviews about her. I just wanted to offer my observations for anyone

who was

wondering...

Her office staff is excellent. Her NP, McQueen, is wonderful to

work

with, calls right back, gets paperwork where it needs to go, etc. Her

secretary is also wonderful and really tries to schedule around whatever

you need.

Dr. Sims is a very smart doctor who clearly knows her pathophysiology and

doesn't mind giving technical explanations (which is actually what I

prefer).

Personality wise, she is a bit different. Seems to be a bit off

socially.

Made some comments that were a bit abrasive but she truly didn't seem to

be

aware that she was coming off that way. Personally, it didn't bother me

because

I was there for a neuro exam and diagnosis and I can get warm fuzzies

elsewhere. She did seem to be impressed by abnormal findings and I'm

not sure that

she'd be the one to go to with more vague or intermittent problems. She

seems like she'd imply that you should " suck it up " unless there were

some clear

neuro symptoms. Of course, that's just a guess.

She did the exam and said " you have real neurological problems. " (As

opposed to what???) She said that my reflexes were very brisk, with

clonus, and

she was surprised that there wasn't any damage seen on the MRI. (Just

like

that, gee you should have some brain damage, lol) Her (I guess)

compliment of

the day was that I'm functioning well with the deficits that I have.

The

tremors are not true tremors and are pretty characteristic of OXPHOS

defects.

The neuro signs could be stroke damage. Or some other process, we'll

have to

wait and see. She recommended a muscle bx, which I've decided to have.

She

recommended massive doses of antioxidants and maxing out the carnitor.

And

she was #4 to tell me I can't drive. Bummer. She talked about getting

a

scooter, using a cane, and probably other things but by then my brain was

full so

I saw her lips move but nothing made sense. I'm planning on applying

for

social security. Eventually. I downloaded the packet and I'll let it

hang

around for a little while

So that's the latest. Miss has been keeping me busy and we just

got

back from another inpatient stay. Hopefully she'll behave for a while

so I

can get more of my stuff done.

Take care

Heidi

[Guest guest]

Heidi

It sounds like a stressful, but fruitful appointment.

laurie

>

> Heidi,

> I hope you and both get the rest you need. I am glad

> is out of the hospital. I am glad your appointment with Dr. Sims

> went relatively well. It sounds like she knows her stuff. It is nice to

> get your opinion of her, as I am seeing her in June. It sounds like she

> had some good advice, even if some of it came off a little " different " .

> It is good to know ahead of time that she can be like that. I tend to

> take some doctor visits to personally unless I know that they will be a

> certain way!

> Take care and I hope you can get your rest and get other things

> done that you need to.

> Smiles,

> a K.

>

> On Mon, 25 Apr 2005 06:23:44 EDT mom2colemankidz3@... writes:

> Hi All

> I had my appt with Dr. Sims, neurogeneticist at MGH. I had heard mixed

> reviews about her. I just wanted to offer my observations for anyone

> who was

> wondering...

>

> Her office staff is excellent. Her NP, McQueen, is wonderful to

> work

> with, calls right back, gets paperwork where it needs to go, etc. Her

> secretary is also wonderful and really tries to schedule around whatever

> you need.

>

> Dr. Sims is a very smart doctor who clearly knows her pathophysiology and

>

> doesn't mind giving technical explanations (which is actually what I

> prefer).

> Personality wise, she is a bit different. Seems to be a bit off

> socially.

> Made some comments that were a bit abrasive but she truly didn't seem to

> be

> aware that she was coming off that way. Personally, it didn't bother me

> because

> I was there for a neuro exam and diagnosis and I can get warm fuzzies

> elsewhere. She did seem to be impressed by abnormal findings and I'm

> not sure that

> she'd be the one to go to with more vague or intermittent problems. She

>

> seems like she'd imply that you should " suck it up " unless there were

> some clear

> neuro symptoms. Of course, that's just a guess.

>

> She did the exam and said " you have real neurological problems. " (As

> opposed to what???) She said that my reflexes were very brisk, with

> clonus, and

> she was surprised that there wasn't any damage seen on the MRI. (Just

> like

> that, gee you should have some brain damage, lol) Her (I guess)

> compliment of

> the day was that I'm functioning well with the deficits that I have.

> The

> tremors are not true tremors and are pretty characteristic of OXPHOS

> defects.

> The neuro signs could be stroke damage. Or some other process, we'll

> have to

> wait and see. She recommended a muscle bx, which I've decided to have.

> She

> recommended massive doses of antioxidants and maxing out the carnitor.

> And

> she was #4 to tell me I can't drive. Bummer. She talked about getting

> a

> scooter, using a cane, and probably other things but by then my brain was

> full so

> I saw her lips move but nothing made sense. I'm planning on applying

> for

> social security. Eventually. I downloaded the packet and I'll let it

> hang

> around for a little while

>

> So that's the latest. Miss has been keeping me busy and we just

> got

> back from another inpatient stay. Hopefully she'll behave for a while

> so I

> can get more of my stuff done.

>

> Take care

> Heidi

>

>

[Guest guest]

Hi Heidi,

I'm glad to hear you had a fruitful visit with Dr. Sim's.... you have

described her to a " T " ... Unfortunately I am a warm, fuzzy & sensitive patient,

so

I'm really thankful for McQueen, she's a godsend for me... Dr. Sim's is

definitely a " suck it up " type of doctor.. I often wonder if she actually

realizes what it is like to have mito as an adult... But that's between you,

me & McQueen LOL....

Anyhow, I'm glad it went well...

Chris

In a message dated 4/26/2005 5:43:15 A.M. Eastern Daylight Time,

writes:

Subject: Dr. Sims MGH

Hi All

I had my appt with Dr. Sims, neurogeneticist at MGH. I had heard mixed

reviews about her. I just wanted to offer my observations for anyone who

was

wondering...

Her office staff is excellent. Her NP, McQueen, is wonderful to work

with, calls right back, gets paperwork where it needs to go, etc. Her

secretary is also wonderful and really tries to schedule around whatever you

need.

Dr. Sims is a very smart doctor who clearly knows her pathophysiology and

doesn't mind giving technical explanations (which is actually what I

prefer).

Personality wise, she is a bit different. Seems to be a bit off socially.

Made some comments that were a bit abrasive but she truly didn't seem to be

aware that she was coming off that way. Personally, it didn't bother me

because

I was there for a neuro exam and diagnosis and I can get warm fuzzies

elsewhere. She did seem to be impressed by abnormal findings and I'm not

sure that

she'd be the one to go to with more vague or intermittent problems. She

seems like she'd imply that you should " suck it up " unless there were some

clear

neuro symptoms. Of course, that's just a guess.

She did the exam and said " you have real neurological problems. " (As

opposed to what???) She said that my reflexes were very brisk, with

clonus, and

she was surprised that there wasn't any damage seen on the MRI. (Just like

that, gee you should have some brain damage, lol) Her (I guess)

compliment of

the day was that I'm functioning well with the deficits that I have. The

tremors are not true tremors and are pretty characteristic of OXPHOS

defects.

The neuro signs could be stroke damage. Or some other process, we'll have

to

wait and see. She recommended a muscle bx, which I've decided to have.

She

recommended massive doses of antioxidants and maxing out the carnitor. And

she was #4 to tell me I can't drive. Bummer. She talked about getting a

scooter, using a cane, and probably other things but by then my brain was

full so

I saw her lips move but nothing made sense. I'm planning on applying for

social security. Eventually. I downloaded the packet and I'll let it hang

around for a little while

So that's the latest. Miss has been keeping me busy and we just

got

back from another inpatient stay. Hopefully she'll behave for a while so I

can get more of my stuff done.

Take care

Heidi

[Guest guest]

It sounds like your visit was highly productive. I would recommend

however, that you apply for SS now. Do not wait ! It takes well over

a year for it to be approved - IF you can get it, and it's retro-

active. I'm waiting for my appeal and the appeals process alone has

taken almost 2 years without a court date.

As for the doc, I had to laugh a couple of times while I was reading

your post. Sounds so familiar. I work with two 1st yr med students

in a program for chronically ill patients like myself and they got to

hang out with me for a neurology visit one day. I think it was a real

eye-opener about being on the other side, plus, one of them said " what

is it about neurologists that they're all geeks ! " I cracked up. My

neuromuscular doc is exactly how you described Dr. Sims. She is

highly intelligent but doesn't always use the best tact when making

statements and forgets that she is talking with a patient (living and

breathing ), not the microscope. I think some docs have a lot of

trouble separating the people part of medicine with the lab part.

They're fantastic scientists and mediocre conversationalists. You

seem to have the right attitude about dealing with her. Use her for

knowlege and not for the " warm and fuzzies. "

Best of luck and I hope you get the answers you seek from your biopsy !

Bug

[Guest guest]

I have a conclusive diagnosis (by fresh muscle biopsy) of a Complex I

defect mitochondrial disease, but I think they still haven't " figured

me out " . I think it is a continuous journey to the best health we

can have, taking into account current and future health.

Take care,

RH

> >

> > It sounds like your visit was highly productive. I would

recommend

> > however, that you apply for SS now. Do not wait ! It takes well

over

> > a year for it to be approved - IF you can get it, and it's retro-

> > active. I'm waiting for my appeal and the appeals process alone

has

> > taken almost 2 years without a court date.

> >

> > As for the doc, I had to laugh a couple of times while I was

reading

> > your post. Sounds so familiar. I work with two 1st yr med

students

> > in a program for chronically ill patients like myself and they

got to

> > hang out with me for a neurology visit one day. I think it was a

real

> > eye-opener about being on the other side, plus, one of them

said " what

> > is it about neurologists that they're all geeks ! " I cracked

up. My

> > neuromuscular doc is exactly how you described Dr. Sims. She is

> > highly intelligent but doesn't always use the best tact when

making

> > statements and forgets that she is talking with a patient (living

and

> > breathing ), not the microscope. I think some docs have a lot of

> > trouble separating the people part of medicine with the lab

part.

> > They're fantastic scientists and mediocre conversationalists.

You

> > seem to have the right attitude about dealing with her. Use her

for

> > knowlege and not for the " warm and fuzzies. "

> >

> > Best of luck and I hope you get the answers you seek from your

biopsy !

> >

> > Bug

> >

> >

> >

> >

> >

> >

> > 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.

> >

> >

> >

> >

> > ---------------------------------

> >