Medical Record Received from St. Louis MS Specialist

[deborah0904]

I finally received a copy of the clinicals and notes from the St. Louis, MS Specialist.

I noticed a couple of things that were incorrect.  #1: The Dr. listed me as a social drinker.  I don't drink and find it offensive that she has made this statement.
#2: My reflexes on the lower extremities are very brisk however; she has stated they are normal.
I have called that clinic back to see what can be done about the incorrect statment that is listed.  For some people, that may not be anything to be concerned about however; it makes me wonder if she is mixing me up with someone else.  Next, I don't want someone else thinking that alcohol could be causing me problems when I don't even drink.

Another thing I found out is that she found two additional juxtacortical WM abnormalities in the superior paramedial left frontoparietal lobes.  Does this mean two other lesions or something else wrong in the white matter?

Her comment in the assesment states patient has 20 year history of scattered neurologic complaints including parasthesias, urinary incontinence and fatigue with brain and spinal cord WM changes atypical for but potentially consistent with a demyelinating process.  She then goes on to say "Her MRI abnormalities are of concern however and given her sequelae of complaints it is possible that the patient has a benign form or variant of MS.  Nonetheless, in the absence of additional evidence it is not clear that starting DMT at this time is necessary.

She suggests repeating MRI in a 1.5 or- 3T closed magnet.  Because I'm overweight, she wants me to have a lap-band procedure.

In her notes, she says"It is not at all clear to me why she requires a cane".  Obviously, this Dr. never heard or understood anything I told her.  It makes me so angry.

2 Dr.'s say I definitely have MS and she says maybe, maybe not.  I do gather from her and one of the other Neuro's that there is a concern with the white matter of my brain but, how do I find a Dr. who can tell me what that problem is?  

Thanks for letting me vent!

[Wobbly]

yes I would get the correction made and this sure sounds confusing... it's like there, but she isn't going to see it... unless you get a lapband thingy... which is ridiculous to me..
sorry your going through all this... I know how you feel..

take care
wobbly
undx

[ChunkyMonkeysMommy]

Ugh! I don't even want to get started on the inaccuracies of medical records. (Btw, thank you for responding to my post yesterday.) After going through what they sent, I can now PROVE that there are A LOT (two years worth, PLUS some here and there for three years after that) of records missing from my file. I KNOW there were more records because they sent copies of some of the tests to my endocrinologist, who had copies of these tests in the file he sent to me. Yet, they aren't in the file from them. So, I supposed I'm going to have to go through my EOBs or call the insurance company to see if they can send me a listing of all the times I was there, so I can prove it to them and demand to know where the remainder of my file is... based on me receiving records of other patients in my file, I'm guessing that's where my records are, in someone else's file. And the things that put down that just aren't true, GRRR! I'm not a violent person, but I could sure (metaphorically) rip someone's head off at that office! Working for an insurance company, I'm sure you know you have the right to make them fix the inaccuracies - through HIPAA. Good luck!

[cz1970]

Hi there,

Yes you should get her to correct your records. That little statement can definetly affect your future care. Sorry about the insults she riddled upon you too. Have you created yourself a detailed time line? My scans are all negative however I was dx w/ MS and am on Copaxone. The timeline made the difference for me. Good luck!

cz