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 10-13-2012, 07:32 PM   #1
Newbie
(female)
 
Join Date: Oct 2012
Posts: 3
Sorrose HB User
Question Frustrated and confused...

I'm new to this board and I may or may not belong here, but I can't seem to find answers anywhere else. I began having trouble with my left eye at the end of June, beginning of July, 2012. I had tremendous pressure, photophobia and had to start wearing sunglasses because the pain was so intense. I went to an FNP who said it was a sinus infection. She put me on Cipro for 10 days. I know what a sinus headache and infection feels like and this was nothing like it. The pain continued so I had an xray done. She said it showed a massive infection behind my left eye and prescribed more Cipro, this time for 21 days. Still no change and when I would call her office for results or to say there was no change, the receptionist and nurse seemed very annoyed with me, so I made an appointment to see another doctor. She insisted it was migraines and put me on different medications, but the pain was still there. She finally decided to do an MRI without contrast. The week before the MRI, I ended up in the emergency room in tremendous pain. The diagnosis was kidney stones which took several days to pass. Then, I went for the MRI. The results came back that I had "multiple foci of increased signal throughout the deep white matter of both hemispheres measuring a few millimeters in diameter up to approximately 9 mm in diameter each. The findings are nonspecific and could be related to any type of demyelinating process. However, in this age patient multiple sclerosis is the primary consideration. These involve frontal, parietal and occipital regions bilaterally. There is no extra-axial fluid collection or hemorrhage identified. Impression: Findings are highly suggestive of multiple sclerosis as described."
My doctor then referred me to a neurologist who felt that because other symptoms were so vague, other than the visual problem with my eye, that I was having one long silent migraine that wouldn't quit, however, he decided to send me for 2 more MRI's; one of the brain and one of the cervical spine, both with and without contrast. There was no change in that 2 week period, but the same report came back on the MRI (brain) the cervical showed no abnormalities. The neurologist then sent me for an LP which was fine... it was the headache after that resulted in having to have a blood patch that was the doozy. The results of the LP came back negative for lyme, lupus, brain cancer, etc. and he said since the LP came back negative with no bands, he was ruling out MS. Thus, he went back to the migraine issue. I know what a migraine is and this is nothing like what I have going on in my eye. He decided to send me for an echo, 2 ultrasounds, and more bloodwork done to see if I was having strokes. My mom said no to those tests until I am referred to an opthalmologist for the eye problem, which has gotten worse, so he referred me to an eye specialist and I will be going November 8th. I felt really stupid the first and last time I went to the neuro. The 2nd time I saw him, he seemed more compassionate and concerned that it was MS, but when the LP came back negative for it, he brushed me off. I am frustrated, sad and would like to know if an MRI as described above, but a normal LP is conclusive to rule out MS. I'm sure others have voiced this same concern somewhere on the message board, but I can't find anything as of yet.
Any response would be so very appreciated. Thank you.

><> Sorrose

 
Reply With Quote
Sponsors Lightbulb
   
Old 10-13-2012, 07:52 PM   #2
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,447
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Frustrated and confused...

Welcome. A negative LP is not a reason to dismiss a patient for the possibility of MS. I have had 2 LPs 20 years apart and neither has been positive. 15% of MSers do not have a positive LP.

I would say that you were not seen by an MS Specialist, rather, you saw a general neurologist or one who had little if any experience with MS. Take your records and images and go to see an MS Specialist.

I have been wearing sunglasses since 2002. I do not have photophobia, but I do have light sensitivity which varies with light frequency. Without my sunglasses I would develop severe pain behind my right eye.

Again, welcome!
__________________
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 gives a hug of support to MSJayhawk:
Sorrose (10-13-2012)
Old 10-13-2012, 08:36 PM   #3
Newbie
(female)
 
Join Date: Oct 2012
Posts: 3
Sorrose HB User
Re: Frustrated and confused...

Thank you for responding so quickly. The neurologist was originally going to send me for the evoked potential testing and pending those results, an MS specialist (which is 3 hours away) However, since the LP came back normal, he cancelled everything. I will ask for a referral to an MS Specialist, pending the opthamologist appointment. Again, Thank you so much!

 
Reply With Quote
Old 10-13-2012, 09:43 PM   #4
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,447
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Frustrated and confused...

No worries. You should have had a VEP before he dismissed you. I travel almost 2 hours each way to see my neuro. If you give us a region in which you reside, you might find some help here. The local MS Society or MS Association office nearest to you can also lend you help in getting a referral. Do let us know without giving your private info.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Old 10-13-2012, 10:46 PM   #5
Facilitator
(female)
 
Join Date: Sep 2006
Location: USA
Posts: 8,752
MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
Re: Frustrated and confused...

Your opthamologist may or may not be qualified to help you. He or she may refer you to a Neuro-Opthamologist, which would be a good thing. Also, he or she can order the tests which you need. As Jayhawk pointed out a normal LP means absolutely nothing...and a Lupus test, cancer test and most other serious diseases cannot be determined by a LP. The only thing that test did was rule out brain infections, meningitis, bacterial and viral infections.

You really need to see a MS specialist....but many a case of MS have been picked up by a good opthamologist....seeing a neuro opthamologist ( an eye specialist who deals with diseases of the eye caused by neurological disorders) would be even more helpful.

At least you are headed the right direction.

Feel better...and remember, that who you see is very important- seeing the wrong doctor, as in a general neurologist, is costing you time and energy- not to mention anxiety! The good news is that other than that, a delay in treatment is going to make the disease any worse...if it is MS, it will still be there in a few weeks or months!
Hang tough and please keep us posted..
Nikki
__________________
RRMS- dx 05

 
Reply With Quote
Old 10-14-2012, 03:30 PM   #6
Newbie
(female)
 
Join Date: Oct 2012
Posts: 3
Sorrose HB User
Re: Frustrated and confused...

Hello again.

I have had a lot of misgivings about having the LP done because of the complications that came after it, especially since the neuro and his FNP said, "LP Normal. No MS" not because they ruled out MS, but because they made me feel like I wasn't really having the symptoms I'm having.
I live in Northern MS, near Tupelo. I'm not real familiar with the area yet, because I'm fairly new, but I'm glad I found this board.
Thanks for the encouragement!

 
Reply With Quote
Old 10-14-2012, 03:57 PM   #7
Facilitator
(male)
 
Join Date: Sep 2007
Location: Kansas, USA
Posts: 8,447
MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Frustrated and confused...

Not to worry. Double down and move forward. Check with the MSAA or the MS Society in your area. I know there are several MS Specialists in your area or within driving distance. Do your best and please come back here as often as you need.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
Frustrated by MS Symptoms arijj Multiple Sclerosis 8 09-08-2011 10:25 PM
frustrated msuracer Multiple Sclerosis 12 06-02-2010 07:25 AM
Frustrated with my symptoms Delilah008 Multiple Sclerosis 17 09-09-2008 11:04 AM
In Need Of Rest & Feeling Frustrated!! cindys601 Multiple Sclerosis 2 06-26-2008 05:39 PM
Frustrated! No more copaxone... injection site reactions ShelleyTab Multiple Sclerosis 9 03-02-2008 06:44 PM




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 (998), MSNik (525), Snoopy61 (58), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), LasVegasgirl (8)

Site Wide Totals

teteri66 (1180), MSJayhawk (1004), Apollo123 (904), Titchou (847), janewhite1 (823), Gabriel (759), ladybud (754), sammy64 (668), midwest1 (668), BlueSkies14 (610)



All times are GMT -7. The time now is 11:08 AM.



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