still no answers

[coll1331]

After three trips to my local neuro with no answers, I was referred to an ms specialist in Boston. Though I felt much more comfortable with her, I still have no answers. I am normally a very active mother of four..and I can't even chase the dog. She said that though there were white spots on my brain, that my brain scan was "unremarkable" (kinda funny :)  I have a thorasic??? mri on Monday...Does anyone know what this is for? I probably should've asked..but was a little nervous. She said that she is not convinced either way about MS. Her advice to me was that though I am frustrated that I do not have a diagnosis, I should be careful what I wish for...I may not like it. And I do agree, and obviously do not want there to be anything seriously wrong with me, I want the pain, numbness and fatigue to go away! Thanks for letting me vent!

[coll1331]

thank you so much to everyone...so helpful!

[biowham]

What a dumb thing to say..."Be careful what you wish for, you may not like it." As though "wishing" or not has anything to do with it. Either you have MS or you don't. Whether you wish for it or like it or not doesn't enter into it. Her saying that makes it sound like she thinks you're just there seeking a diagnosis, rather than seeking help. And it was supercilious, at best. Your change in quality of life is significant and relevant, and she ought to be paying attention to that. Also, you are presenting with symptoms AND have "white spots" on your brain, and she ought to be paying attention to that.

These neuros who behave like this ought to be lined up, injected with something that causes vague, life-changing neurological symptoms, and then treated high-handedly and dismissively for a few years before someone deigns to take them seriously. It's the only valid punishment I can think of for people like this.

Bio

[fortywhat2]

Welcome... I just wanted to stop by and introduce myself.  My name is Debbie I have PPMS and I live in Wareham.  We are neighbors!  I have a great Neuro in Boston.  If I can help you threw your frustration just let me know.
Debbie
~live as if all your dreams came true~

[doublevision1]

Also, there is a Health Page entitled: Common blood tests you'll see during the diagnostic process."  
Thought you might find that info helpful as well.
The link to the Health Pages is located on the top right hand corner of your screen, right under "Discussions"

[doublevision1]

Did your previous MRI inlcude a scan of your cervical spine?   If not, I would suggest you ask to have this included when you go for the thoracic MRI; also, if they are checking for MS, they should perform the MRI as per established MS protocol; the scan should be done without and then with gadolinium as this may show areas of active inflammation and provide a better overall picture.

Someone else mentioned bloodwork; you should have had the numerous standard tests to rule out MS mimics and other conditions that could be the cause of such symptoms (pain, numbness, fatigue), which are non-specific and could be the result of any number of issues.

There is info on the Health Pages about MRI protocol for MS.

Good luck and let us know how you make out.

Peace

~doublevison~

[uk2]

hi

And welcome to the forum.

I understand the frustration of wanting to know what is wrong with you and you have the right to as well. They like to MRI all the spine to see if their are lesions or any problems with the back further down, they did that with with first brain and cspine, then throsic then even pelvis with me but nothing but that was all 2 yrs ago now and i am registered disabled now and getting worse every flare they said i had fibro but my GP and a A&E dr think there is more going on now but sometimes it takes to your really bad that they stand up and take notice again.

If you feel unwell still, hopefully she will keep you on and keep checking you ever 6 mth or yearly and get to the bottom of this.

If fatigue and numbness is the only sx you have at the moment its hard for her to tell whats going on if the tests are coming back clear.

No one wants MS but we all want an answer. I see you have pain too, where is the pain? have you thought about fibromyalgia alot of people have this as well as MS and it has very close sx to MS.

sam

[coll1331]

Thank You!

[Fluffysmom]

Hello, and welcome.  

I'm also a person without answers, with lots of white spots on my brain; my neurologists didn't think they were caused by MS, despite my symptoms (dizziness, fatigue, tremors, pain, parasthesias, etc).

Has your ms specialist sent you for a lot of bloodwork?  Has she done a thorough neurological exam?

If she doesn't think you have MS, she is probably ordering the thoracic MRI to make sure that there isn't a lesion (shows up as a white spot) on your spinal cord.  

If you haven't already, please check out our Health Pages (upper right hand corner of this page).  There is alot of great information there.

I totally understand your frustration with your lack of diagnosis.  My ms specialist is my third neurologist; I've also seen a neuro-ophthalmologist, a uro-gynecologist, and have an appointment next month with a rheumatologist.

I don't want to have anything seriously wrong with me either; I want my life back!  If that's not totally possible, then I want to know what I'm working with and adjust things to improve my quality of life.  I found a medication to help with my fatigue, but it is very expensive and my insurance won't cover it because I don't have a diagnosis.

Oops, I vented, too.  It's nice to let off a little steam now and then, and this is a great place to do it.

Take care,

Kathy