Dr. Sims MGH

[Guest guest]

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