It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 09-17-2012, 01:09 PM   #1
Senior Member
(female)
 
Join Date: Jul 2012
Location: Somerville, AL, United States
Posts: 129
raden HB Userraden HB User
Being your own advocate or just a brat?

OK- vent to follow! Advice please! I hate that most of the time the squeaky wheel gets the attention! With that said, and going thru this limbo-land crappy place has made me realize you have to be that way... how do you know the line between advocating for your health, because God knows whats going on is not normal and 3 drs have said I need to see a neuro... and being a brat? I just hate that!

Its been more than a week since my MRI and I found today that my GP did not send my file over to the neurologist because he didn't have the MRI report (which I offered to bring to him last week and called the radiologist to fax it again). But the radiology dept is at the neuro office I will be seeing is the one who wrote the report so they don't need it to come with the file... although I do understand my GP wanted to see it before sending my file and referrel-anyway after talking to both drs offices, its amazing... they wrapped up my file and it was just faxed to the neuro, within an hour.

I have no clue so I am not trying to be bratty... I just wonder how long it would've sat there without that report when 1) it was suppose to be faxed 2x (from the neuro office to my GP) and 2) my GP thinks this is serious? I know my brain is not their upmost concern, however, it is to ME! and 3) the neuro won't look at the MRI or set up an appointment without the file...

This lag just seemed so unnecessary, thats why its aggrevating... in the overall picture a week doesn't seem long... but this has been one awful week where whatever this is has had me in bed asleep everyday for a nap, and extremely numb hand/foot making it difficult to function normally and now even my mother-n-law has reallized somethings wrong with me

 
Reply With Quote
Sponsors Lightbulb
   
Old 09-17-2012, 02:14 PM   #2
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,136
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Being your own advocate or just a brat?

No matter how pleasant the doctor, you must still advocate for yourself. I would temper this with a manner befitting your doctor. There are some excellent doctors out there and there are some who never played nice in kindergarten and carry a big chip on their shoulders. Such is a fact of life.

Even after exiting limbo land, you must still strengthen a relationship because MS is a life long walk and the doctor you see will be along for most of your walk. I am on my second neuro at the same clinic I began my journey. I was fortunate to have experienced two wonderful doctors who care enough to advocate for ME! Still, I try to be part of the team. Studying the research and reading the news make for interesting visits.

While you are in limbo land, you may need to be that squeaky wheel. If you are not being heard, "SQUEAK" as often as needed. Let your doctors know that you are looking for an exit ramp out of limbo land and you do not need more detours! IF it takes a squeaky wheel to get out of limbo land, go for it. You need not apologize!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 09-17-2012, 02:41 PM   #3
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,547
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Being your own advocate or just a brat?

Please dont be offended when I say this, its meant to be a lesson to everyone- not specific to you.....
EVERYONE should keep a file of everything they have done at home. Blood work? MRI films/ Cds? Reports? doctors notes? Any other tests....it is your legal right to have copies of everything. They can charge you an admnistrative fee to make copies...but legally, cannot refuse to give you anything. I do not leave any doctors office now without a copy of what took place THAT day, an updated med list, any updated test results...etc. When I go to the lab, I ask that they send me copies of the results (they always do) when I have an MRI, I stick around and pay the 10$ for CD of my brain/ spine- I always get it. When I have a mamogram, I get copies of the films (no, Im not crazy, they have been watching a "thing" for three years now in my breast). I keep everything in a HUGE file under my bed......and take what I need, everytime I see a specialist. My eye doctor wants to see my Brain MRIs- my optha-neurologist wants to see EVERYTHING. My breast doctor, wants to see what meds Im on, in writing....everyone wants to know everything..if I waited until it was "sent" to everyone, Id never get anything done!

This is part of advocating for yourself. Keeping your health records close at hand, and not relying on anyone to send them. You said it yourself, no one cares about your brain as much as YOU do - and why should they? ITs not their health...

Do yourself a favor. Get mad and get even! Start forcing them to make you copies of everything- start being a pest- yes, the squeaky wheel gets noticed, BUT you shouldnt have to squeak that loudly to prove that you mean business....and if they want yours- they need to cooperate. Right? Afterall, doctors these days are losing money hands over fist due to reimbursement levels dropping, they do not want to lose patients....(remember to tell them that!)

YOU GO!! You have every right to be venting....but do yourself a favor and learn from this experience, that only YOU can take responsiblity for yourself...and this is a sure fire way to make sure it doesnt happen again.

Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Old 09-17-2012, 03:41 PM   #4
Inactive
(female)
 
Join Date: Apr 2010
Posts: 103
MS22 HB UserMS22 HB UserMS22 HB UserMS22 HB User
Re: Being your own advocate or just a brat?

spharden: I don't want to upset you any more than you already are, but if your MRI showed MS outright, you would have been called by now most likely.

The center faxes the MRI to the neurologist because they are the ones who read it. I agree that you should stick around and get a copy for yourself. A CD too. Maybe a couple. One for your PCP and one for a second opinion.

It is really good to be your own advocate, but you can wait a week, get the results now from your neurologist (a copy), and if you don't like what he/she says, then move on to a second opinion with your results in tow.

Good luck and let us know what it shows.

We all feel for you, but don't let it work you up too much...so not worth it.

 
Reply With Quote
Old 09-17-2012, 06:24 PM   #5
Senior Member
(female)
 
Join Date: Jul 2012
Location: Somerville, AL, United States
Posts: 129
raden HB Userraden HB User
Re: Being your own advocate or just a brat?

I appreciate all of your feedback. I actually have read you saying to get copies of everything- which I HAVE. I HAVE all of it that has been done outside the actual GP dr office (which is all but the evaluation or his opinion I guess from my office visits). The problem was that the report wasn't sent to my GP, who was waiting on it before he sent my entire file to the neuro. I could have got copies of stuff that my GP has tested for, correct, at a price (not bad) and sent the records, but it wouldn't have had the referrel which is suppose to cut the wait time on the neuro appt down significantly.

When I called the neuro this morning (when i found they had received NOTHING) they stated they do have the MRI, but the neuro will not look at it til he has the file to represent the whole picture. This was also told to me when I called their office before the MRI was done.

To address the comment made about the neuro already having looked at it: The report is signed by an MD, not sure if a neuro has other initials, but its not the neuros name I will be seeing, if they wrote the report (which they do for all MRI's done by the facility where I had mine) why would the neuro have already looked at it? I am not his patient... have never been to his office, and its normal practice for the office to fill out MRI reports for patients of other drs. Not sure there...my GP has ordered all the test done til this point (which may be a little different) and when I called to get an appt with the neuro my MRI was already scheduled the next week. I was told by that office to wait til that was complete and send it all over together and they will call with an appt.

My frustration came from the fact time is lost... I pray I don't have MS too, but that seems to be where the eye dr first pointed and then everyone followed suit. I have not known anything about this til I came on this board and became serious about finding out whats going on with me.

To be honest, I just don't want to sit still or even stand in limbo-land for one day longer than necessary... I appreciate all of your feedback sincerely, and I don't get offended easily if ever, especially when you all have made this seem like its going to be alright, whatever happens. That means alot! Keeps me at peace knowing people have been here before, and they are fine! And I keep it in perspective that its already been 8+ months since this started... but man this past week has just seemed to get so much worse I am a little impatient at the moment

 
Reply With Quote
Old 09-17-2012, 06:46 PM   #6
Inactive
(female)
 
Join Date: Apr 2010
Posts: 103
MS22 HB UserMS22 HB UserMS22 HB UserMS22 HB User
Re: Being your own advocate or just a brat?

I so understand you. We all do. My point was that the radiologist, who is an MD, who reads the films, and would decide if the MRI looked like MS, would have called your doc if it looked like a definite MS picture. You would have gotten a call that night.

I am just saying this from a medical perspective and personal perspective. I have gotten the call.

Now, this does not mean that you do not have MS, or that you do not have inconclusive results. It just means that so far, no news is good news!

When you see your neurologist, you will go through the MRI together, or at least you will get a report about it. At that point, if he says it is not MS and wants no further tests, get a second opinion.

If he says, "hey, this looks like it could be MS, but we need an LP or a VEP", then you will be on your way.

I know patience can be hard to come by, but come here and vent and complain. That is what we are here for. Leave the docs be...its only a week. Yell at us instead!

At least we understand you!

 
Reply With Quote
Old 09-17-2012, 07:21 PM   #7
Senior Member
(female)
 
Join Date: Jul 2012
Location: Somerville, AL, United States
Posts: 129
raden HB Userraden HB User
Re: Being your own advocate or just a brat?

I understand. Gotcha, I had not heard it put that way cause I just thought the radiologist did the report then whatever dr you go to will "finalize the report by interpretation" (or however thats worded on the report). And matter of fact, the reading said there are no white matter lesions, and doesn't show demyelination. When i told my GP nurse I had the report and could give it to them, I told her it says its negative, she said, what does that mean? I have no clue! except there is nothing glaring- yea! (I do have the CD of the images, and I also do not see the glaring white circles which MRIs of MS patients have) but it doesn't say anything about gray matter which is what the eye dr stated on his report when I flunked the VEP. I also only had the brain with/without contrast but my GP is not going to order anymore tests cause he said I am over his head and need to see a specialist... so here we go...

I shouldn't have got on here so quickly to vent. I am just all-together frustrated! Its just been a bad week so I thought I would spew on you all? Whoops! I do appreciate that you understand because NO ONE else in my life does and WEIRD is kinda like word of the day.. well it certainly is for these symptoms and problems for sure! Thanks again to you all!!!

 
Reply With Quote
Old 09-17-2012, 07:30 PM   #8
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,136
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Being your own advocate or just a brat?

No worries. Venting here is often done and rarely judged! Most MSers have walked in limbo land and we understand your position and your desire to get answers. The process can require the patience of Job!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
The Following User Says Thank You to MSJayhawk For This Useful Post:
raden (09-17-2012)
Old 09-18-2012, 02:57 AM   #9
Inactive
(female)
 
Join Date: Apr 2010
Posts: 103
MS22 HB UserMS22 HB UserMS22 HB UserMS22 HB User
Re: Being your own advocate or just a brat?

So, your MRI is negative. That is good. Your VEP was positive from what you say. Was it in one eye or both?

The MRI looks at the health of the optic nerves behind the eyes so I am happy they seem healthy.

Do you still have problems with you eye? Perhaps the test was wrong. No matter, you will take it again around 6 months to make sure.

You may also get an LP although it will not diagnose you as you will not meet the criteria for McDonald criteria.

On another note, you could look into NMO. Especially if it turns out you have spinal lesions.

For now, let it just play out. It is just a process. No matter how horrible it seems, it is to protect you from getting an inaccurate diagnosis and starting a DMD that could hurt you.

Best wishes. Keep us informed!

 
Reply With Quote
Old 09-18-2012, 06:35 AM   #10
Senior Member
(female)
 
Join Date: Jul 2012
Location: Somerville, AL, United States
Posts: 129
raden HB Userraden HB User
Re: Being your own advocate or just a brat?

"So, your MRI is negative. That is good. Your VEP was positive from what you say. Was it in one eye or both?"

The right eye showed 1 normal wave and 2 abnormal, the left, where I have had pain now for months, 1 was abnormal and 2 were "unobtainable". He did the test and said the results were "unreliable", so we went back 15 minutes after the first one and repeated the test and it showed the same thing. He then went into great detail about what the results meant, that it also ligns up with my symptoms and complaints and wrote I need to follow up with an MRI (which was already scheduled when I did the VEP).

I have only had one day last fall where my rt eye felt like there was so much pressure it would pop. Immediately went to the eye dr who said pressure was fine. And he threw in the comment that this could be the first sign of MS symptoms. The pressure only lasted about 1-1.5 days. That stayed with me until I started having other symptoms, then my GP, etc have went along that same path... The left eye and vision issues started months ago, around June or July and yes I still have a nagging ache behind that eye. Like its being pushed from behind or squeezed with decrease visual fields and vision.

That is confusing tho because the pictures of my optic nerve show normal and no swelling so I do not have optic neuritis.

My GP (nor I) know where to go from here exept to the neuro so I will update when I have that appt...

Last edited by raden; 09-18-2012 at 06:39 AM.

 
Reply With Quote
Old 09-18-2012, 04:48 PM   #11
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,136
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Being your own advocate or just a brat?

I have severe pain in my arm and today was my appointment. My neuro told me that it is difficult to know the origin of the pain. She told me that it takes just enough inflammation- slight- which can cause pain such as I am experiencing.

Your VEP showed that there were problems. While your Optic Nerve might "look" normal, the origin of the pain might be elsewhere and the pain is simply transferred to your eye via the optic nerve. Confused? It is difficult for the doctor to find the source; therefore, you have every right to feel confused- welcome to the wonderful world of MS!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 09-18-2012, 05:28 PM   #12
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,547
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Being your own advocate or just a brat?

Wow. I just caught up on all I missed. Im glad you feel supported here, thats really important.

Your VEP- an opthamologist isnt really qualified to read this test. A neuro-opthamologist would be. That is a doctor who is crossed trained in diseases of the eye, caused by neurological disorders. If your opthamologist uses this test alot and didnt refer you to a Neuro-Opthamologist, you might want to find out if you should be seeing one. The pressure/ pain you described sounds alot like optical Neuritis, inflammation of the optical nerve. Ive had it, its terrible. My brother, who does NOT have MS, gets ON (optical neuritis) a few times a year...he is watched carefully, but has never shown any signs of MS. No lesions, no Obands, no symptoms. Just the eye pain/ pressure and problems on both his VEP and VFT (visual field test, which measures peripheral vision). You stated that you thought for sure you didnt have ON because your optical nerve wasnt inflammed, that doesnt mean that it hadnt been previously....

There are plenty of diseases which mimic MS which do not require brain lesions or even Cspine lesions- things like NMO and Chiari Malformation come to mind based on your symptoms.

Now, I have to ask...why the GP managing all this? Hes admitted it is out of his realm of specialty - so why does he have to manage all of this? Is it a HMO rule where you NEED to go through the primary? Im just questioning why everything has depended on him getting results, sending charts, etc. Ive NEVER heard of a neurologist who wants things from a GP before...

And, to agree with MS22, the MD who read your MRI was a radiologist; hopefully a good one. 99% of hospitals have radiologists who specialize in brain disorders or neurological disorders, as opposed to the radiologists who primarily read things like abdominal issues......these radiologists sign off on the bottom of the MRI report and send it to your doctor. (you can also request they send it to you). When something supspicious comes up- OR if something life threatening appears, the doctor gets a call immediately - however, in many cases, doctors who are specialists read their own MRI films. My MS Specialist wont read the radiologists report until he makes his own impression- fortunately for me, to date, they have always seen the exact same thing and come to the same conclusion. But my MS doc, likes to play a game which in his mind is "Ill bet I see something the radiologist didnt see". Its never happened yet.....but Im sure eventually one of the two will see something the other doesnt see. That should make for an interesting appointment...

Nevertheless. You really do have good news. No demylination suggests that this isnt MS- no lesions is also a huge thing. Grey matter? The brain is 75% grey matter....if YOU or I look at our films, we cant tell what is supposed to be there or not supposed to be there...but then you and I didnt go to school for ten years to figure it out, right? Im just happy when I see my brain scan to know the brain is still where its supposed to be. In my world, the little things make me happy.

Try not to stress. You are on your way to getting answers, and it appears that your answers might actually be very good news...hang tight. By all means, know that you are not alone and we ALL understand and care...and please keep us posted.

Hugs,
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Old 09-19-2012, 07:05 AM   #13
Senior Member
(female)
 
Join Date: Jul 2012
Location: Somerville, AL, United States
Posts: 129
raden HB Userraden HB User
Re: Being your own advocate or just a brat?

Nikki (and everyone else),
I don't think its too normal, from what I gather, that a GP would order and do testing like mine- I don't know. I left a job last year and currently do not have insurance. He tested for things like thyroid, sugar, B12,etc. thru blood testing. He also had me take the antiinflammatory to see if it would help. The nerve conduction study to rule out carpal tunnel- and that makes sense if its a local issue why not rule it out before going to a neuro thinking its something worse (at the same time he stated he knew that did not say anything to the numb foot/ankle). All that was done pretty quickly and would seem to be a correct route to go.

The eye problems and those dr appt I have done on my own. I didn't know there was a test past what an eye dr normally performed (the VEP) until learning about it thru this board, then researching it so I got it done myself because you don't have to have a referrel. I want the neuro to have as much info as possible before even getting there is where I am coming from. My GP ordered the MRI, again, knowing that needed to be done. (He was also willing to and did fill out the application thru MSAA that resulted in that brain MRI being paid for). Would the neuro have done that? I don't know but it saved me a little over $2000 and obviosly it was done WAY sooner that if I had waited on the neuro to order it! And that does ease my mind a little because at this point I still do not even have the appointment scheduled with the neurologist -so i realize I am not dealing with a life threatening something in my brain.

I am not sure what the eye dr credentials are for who did the VEP testing. If I remember right, there are only 3 locations in Alabama who have the testing so I chose the closest. He is very familiar as well because two of his staff persons (past or present?) have MS. I don't know if he is qualified, seemed to be and wrote it down and signed it, so I would think he udnerstands the test and how to read it (and the graphs I have a copy of with the report, the lines are certainly not what they are suppose to be).

As far as who reads the MRI- no clue. I am glad it doesn't show anything major if anything and just like most have stated, whoever writes that report, the neuro is going to read it himself anyway so thats where I am... waiting on that appt to see where to go from here And I agree that the radiologist who wrote that report may not be specialized, etc. but even you and I can see those white cirlcles on the scans that represent MS at a certain point, and those are not present on mine. so I am hanging tight! I just got riled up about the file sitting there that started this whole conversation... everything takes way too long! Ha - patience of Job-right?

 
Reply With Quote
Old 09-19-2012, 08:56 AM   #14
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,136
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Being your own advocate or just a brat?

I think that given your situation, you are doing pretty well and you are slowly hacking through the kudzu! You will get answers soon. The patience of Job is difficult and we gain a little empathy for Job through our limbo land journey!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
The Following User Says Thank You to MSJayhawk For This Useful Post:
raden (09-20-2012)
Old 09-19-2012, 04:50 PM   #15
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,547
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Being your own advocate or just a brat?

I actually agree. You are doing amazingly well. I would be just as scared and overwhelmed as you are, but not handling it as well as you are to be honest.

I understand your situation better now, thanks for taking the time to explain. I wouldnt be worried about the order things are happening in- or who is reading what- you are keeping records of everything and when the time comes that you see that Neuro, youll be in good shape to go over everything and figure out what comes next. Just remember, if you do NOT like the answers you get from the Neuro, TELL HIM and ask him to refer you to someone else who might be better able to answer your questions. DO not worry about hurt feelings at this point- youve waiting long enough, You deserve to get the answers you seek. If by any chance, he cant give them to you, dont leave without finding out who can!

We are all rooting for you....i hope you know that!

Hugs
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
The following user gives a hug of support to MSNik:
raden (09-20-2012)
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (938), MSNik (497), Snoopy61 (55), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), Canadian gal (10)

Site Wide Totals

teteri66 (1137), MSJayhawk (942), Apollo123 (859), janewhite1 (823), Titchou (773), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 12:00 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!