New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

StacieC
New Member


Date Joined Mar 2007
Total Posts : 10
   Posted 5/31/2007 3:57 PM (GMT -6)   
So - the search for answers continues - I really truly am beginning to believe this is all in my head (sigh). 
 
My MRI of the brain was normal according to the radiologist - "No space occupying lesions" which I assume covers MS lesions.  I would have bet a million there'd be something, especially with my headache history - don't migraines cause lesions too?  Anyway, I suppose I'm happy, but MS was oddly enough something I would have been ok with - it's manageable for the most part - there are meds to help with all this stuff - certainly I'm not saying I'd be excited to have this diagnosis, but I guess, it would have ended the wondering and the fear and mostly it's a non-fatal disease - instead, I continue to feel awful, have all these things wrong, with no answers, thus no meds to help.  The headaches continue, the dizziness, poor balance, numbness to my face and arms, the pains in my legs, the muscle twitches, pain when I move my eyes, occassionally blurring vision - all of it - still here.  Why?  According to the MRI - there is *nothing* wrong with me.
 
And to make it worse?  Two days ago, when my follow-up neuro appt. was, my power went off, and I overslept - missed my appt.  I Never oversleep - ever - but I did.  They are down two neurologists, and it takes up to three months to get in, so now, I might have more input (not that there is anything to add, I guess) come about September.  I was so depressed I didn't even call - I guess I'll get to it tomorrow.
 
Sorry - don't mean to sound like a downer - I'm truly happy, I just hate not knowing and feeling like I'm imagining the fact that I can't walk across the house without falling over two or three times.
 
Stacie

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 5/31/2007 7:14 PM (GMT -6)   
StacieC said...
So - the search for answers continues - I really truly am beginning to believe this is all in my head (sigh). 
 
My MRI of the brain was normal according to the radiologist - "No space occupying lesions" which I assume covers MS lesions.  I would have bet a million there'd be something, especially with my headache history - don't migraines cause lesions too?  Anyway, I suppose I'm happy, but MS was oddly enough something I would have been ok with - it's manageable for the most part - there are meds to help with all this stuff - certainly I'm not saying I'd be excited to have this diagnosis, but I guess, it would have ended the wondering and the fear and mostly it's a non-fatal disease - instead, I continue to feel awful, have all these things wrong, with no answers, thus no meds to help.  The headaches continue, the dizziness, poor balance, numbness to my face and arms, the pains in my legs, the muscle twitches, pain when I move my eyes, occassionally blurring vision - all of it - still here.  Why?  According to the MRI - there is *nothing* wrong with me.
 
And to make it worse?  Two days ago, when my follow-up neuro appt. was, my power went off, and I overslept - missed my appt.  I Never oversleep - ever - but I did.  They are down two neurologists, and it takes up to three months to get in, so now, I might have more input (not that there is anything to add, I guess) come about September.  I was so depressed I didn't even call - I guess I'll get to it tomorrow.
 
Sorry - don't mean to sound like a downer - I'm truly happy, I just hate not knowing and feeling like I'm imagining the fact that I can't walk across the house without falling over two or three times.
 
Stacie
Yes, migraines can cause lesions...but not necessarily.  But the question I'd have for you is this: what other doctors...specialists..have you seen, other than a neurologist?  It's quite possible that what is wrong with you is not neurological in nature....but rather something metabolic.  If you haven't seen a rheumatologist, that might be a good next step.  The results of the MRI don't really say "there is nothing wrong with you". What it DOES say is that maybe what is wrong with you isn't neurological in nature, or maybe it just isn't showing up on the MRI (there are folks here with a diagnosis of MS but lesions have not ever appeared on their MRI.)
 
As for what the radiologist saw..or said he saw ...I'd really want you to wait to talk to the doctor.  It's happened many times before -- what one person sees in an MRI, the next person does NOT see...or sees something entirely differently, even though both are trained in interpreting MRI results.  So the radiologist may not have "seen" something, but the neuro might.  And if indeed there is nothing on the MRI, the neuro should be able to then help you decide where to go next. That certainly is the question to ask him.."OK, if not neurological, what do you suggest my next steps be??"
 
 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


cocoa11
Regular Member


Date Joined Jul 2006
Total Posts : 95
   Posted 6/1/2007 5:09 PM (GMT -6)   
Hi there Stacie,
I know exactly how you feel. I have been in "Limbo Land" for almost 2 years now. The frustration you feel is just awful, I think most of us here have been through this over and over again. I have been waiting for results of an MRI scan since April you may have read some of my other posts in here. You will see my frustration in these.
I have only just received a letter from the Neurologist after waiting almost two months for the results. I really had my fingers crossed THIS TIME he would be able to give me an answer as to WHAT the problem is or tell me what to do next.........she lets out a deep.....long......sigh!
Nope, all he said was, and I quote his words here:

" I am glad to report that the MRI shows no changes since your previous scan 1 year ago. In particular there was no evidence of gadolinium enhancing lesions and no T2 lesions which would suggest that your disease is not currently active. I hope this is of some reassurance.
My reaction.........
YOU'VE GOT TO BE KIDDING, RIGHT? I AM READY TO RUN SCREAMING DOWN THE STREET AT THE TOP OF MY VOICE, STAMP MY FEET AND GO CRAZY........aaahhhhh#####!!! WHAT DISEASE DO I HAVE? What do you mean by "INACTIVE?" Is it MS? Is it my high BP? Come on you wizz bang professor, who is SUPPOSED to be the guru of Neurology, have a stab at it for goodness sake. So, now he has bestowed his wisdom upon my condition, what am I supposed to do about all these life altering symptoms? It looks like back to square one! Oh, well here we go again.........back to the GP and plead for some help and then gather up my MRI scans and take them next week to my appointment at the hospital for a second opinion and hopefully some insight into what my problem is.
MORE FRUSTRATION, MORE TESTS, MORE SPECIALISTS, Is it any wonder we feel this way. I know they all take the wait and see approach and I understand that but could they please treat these awful symptoms in the meantime? I could very well end up in a mental institution if they can't sort this out. I am keen to go to a psychologist to help me manage all of this as I am not sure how much longer I can cope without some sort of support.
Stacie, try and get your hands on the MRI scans and the radiologists report and take it to another Neurologist for a second opinion. Uppity very wisely is correct in telling you that they all see something different. Also another type of specialist would not be out of the question, it may well be something else. Pester the heck out of your GP and get referred to every Specialist you can. It appears you need to rule out everything possible first then they might give you some sort of answer.
When I had my first MRI, this was done because I have severe chronic neuralgia in the left side of my face. I had noticed some other symptoms which I told him about. Dropping things, pins and needles amongst other things. I didn't for a minute think the test would come back with lots of scattered T2 lesions all over my brain and a 12mm lesion in my right frontal cortex.
When he wrote to me after that was done with the results, he went into great detail about what they had found and then stated : It would appear that these lesions would be most unlikely to be the cause of the pain in the "RIGHT SIDE OF YOUR FACE" This is a Professor of Neurology for goodness sake, wouldn't you think he would take a bit more notice of what I told him? He couldn't even get that right! "LEFT" side of my face you dope not the right!
Good luck and keep us posted on how you get on I know how frustrated you must be.
Cocoa
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, October 20, 2017 8:40 AM (GMT -6)
There are a total of 2,884,690 posts in 316,514 threads.
View Active Threads


Who's Online
This forum has 157631 registered members. Please welcome our newest member, KSara.
390 Guest(s), 11 Registered Member(s) are currently online.  Details
DBwithUC, PeteZa, LymeBug21, LotsOfFun, Lapis_29, Tsak11, tennisplayer, samster, Olehorsegal, lovefishing, k07


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer