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How Long To Get A DIAGNOSIS
Hello,
I was just wondering how long it took for any of you with Multiple Sclerosis to get a diagnosis and did it show up on your first MRI? I am really thinking this is what I may have but the docs only gave me a MRI without contrast of the brain and it showed "normal" and that was over 6 months ago. Should I ask for a MRI with contrast? and do you think it would show up now after 6 months?
THanks
I was just wondering how long it took for any of you with Multiple Sclerosis to get a diagnosis and did it show up on your first MRI? I am really thinking this is what I may have but the docs only gave me a MRI without contrast of the brain and it showed "normal" and that was over 6 months ago. Should I ask for a MRI with contrast? and do you think it would show up now after 6 months?
THanks
Forgot to add he told me the MRI scan showed Infalmation in my brain and spinal cord he didnt say if they were leisons but just was quiet concerned..
He said that my Blood work came back clear for any other illnesses ie lupus limes etc and that's why he wants to do a LP but i'm guessing that he cuold tell alot from the MRI scan..
Regards
Kerry
He said that my Blood work came back clear for any other illnesses ie lupus limes etc and that's why he wants to do a LP but i'm guessing that he cuold tell alot from the MRI scan..
Regards
Kerry
Hi Guys
February this year i was told i had transverse myelitis and a chance of developing MS later on in life.
Saw a different Neurologist as the other neuro i saw went on maternity leave.
my new neuro was brilliant after doing various tests on me and asking loads of questions and after revewing my MRI brain thorac and cervical with ans with out contrast he told me i have MS but want to do a LP just to confirm..
If it is 100% i have MS it's RRMS and thinks i have had it for some time..
I was quiet surprised the diagnosise Can't spell sorry was quiet quick because i thought that i was going to be fobbed off and told nothing was wrong..
So i guess i've been quiet lucky and just hope you get answers soon to put your mind at ease..
Good luck and all the best
Kerry x
February this year i was told i had transverse myelitis and a chance of developing MS later on in life.
Saw a different Neurologist as the other neuro i saw went on maternity leave.
my new neuro was brilliant after doing various tests on me and asking loads of questions and after revewing my MRI brain thorac and cervical with ans with out contrast he told me i have MS but want to do a LP just to confirm..
If it is 100% i have MS it's RRMS and thinks i have had it for some time..
I was quiet surprised the diagnosise Can't spell sorry was quiet quick because i thought that i was going to be fobbed off and told nothing was wrong..
So i guess i've been quiet lucky and just hope you get answers soon to put your mind at ease..
Good luck and all the best
Kerry x
It took me 7 long years to get my diagnosis.
I had an initial diagnosis, but then, my former Neuro got cold feet, after a Neuromuscular Neuro at Cleveland Clinic, who saw me for 15 minutes, said she didn't see any signs of MS.
I was very fortunate to get my diagnosis, because I fall into the 2% category of people with MS without visible lesions.
Sheila
I had an initial diagnosis, but then, my former Neuro got cold feet, after a Neuromuscular Neuro at Cleveland Clinic, who saw me for 15 minutes, said she didn't see any signs of MS.
I was very fortunate to get my diagnosis, because I fall into the 2% category of people with MS without visible lesions.
Sheila
well gals I went to the doc Tuesday and he ordered a mri of my brain and thoracic, cervical, and lumbar with and without contrast and went yesterday for them and now I'm waiting on the results. I did get a cd copy yesterday and looked at them last night. I didn't see any thing like white spots or anything in my brain or spinal cord however there is a couple of white circles in my vertabraes??? not sure what that means but hopefully I will found out soon. I'm
I agree with jen673. You should have more than just an MRI of the brain--it the least an MRI of the brain, cervical spine, and mid-spine. MS can attack other areas besides the brain--the spinal cord and optic nerves.
To answer your question, it took years to get a diagnosis. My first MRI was completely bogus as it turned out because the machine wasn't strong enough (open MRI) and wasn't done with MS protocol which included thinner slices. The lesions in my brain didn't show up. My first neurologist said it couldn't be MS because I had no lesions on my brain MRI (from the bogus MRI).
I was going to stop at that point on going on to pursue anything else, until my sister, who was diagnosed with MS, insisted that I see another neurologist. I did, and to make a long story short, he said the first MRI was bogus and ordered another one with MS protocol and the lesions showed up. Since they didn't enhance, they were old lesions which would have showed up on the other MRI had the machine been strong enough with MS protocol. A subsequent MRI six months after that, showed new lesions and a diagnosis of RRMS was made.
There could be a number of reasons why there are no lesions: 1) MRI machine missed them because the machine isn't strong enough, 2) MRI machine missed them because MS protocol wasn't done and the slices were too thick; 3) MRI machine simply missed them because they were too small; 4) MRI machine missed them because you had new activity which may not have shown up yet; 5) MRI wasn't done of the right area when the lesions are (cervical spine, spine); 6) too early in the disease process; 7) you have a mimic disease--not MS; 8) radiologist misread film (yes, this does happen--probably not that frequently, though . . . get copies of MRI); 8) lesions can be invisible on MRI.
Here's two good links from the Health Pages to look at:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-MRIs-Show-Lesions-in-MS/show/23?cid=36
Good for you for changing your GP and standing your ground! I hope answers for your symptoms get here quickly!
Deb
To answer your question, it took years to get a diagnosis. My first MRI was completely bogus as it turned out because the machine wasn't strong enough (open MRI) and wasn't done with MS protocol which included thinner slices. The lesions in my brain didn't show up. My first neurologist said it couldn't be MS because I had no lesions on my brain MRI (from the bogus MRI).
I was going to stop at that point on going on to pursue anything else, until my sister, who was diagnosed with MS, insisted that I see another neurologist. I did, and to make a long story short, he said the first MRI was bogus and ordered another one with MS protocol and the lesions showed up. Since they didn't enhance, they were old lesions which would have showed up on the other MRI had the machine been strong enough with MS protocol. A subsequent MRI six months after that, showed new lesions and a diagnosis of RRMS was made.
There could be a number of reasons why there are no lesions: 1) MRI machine missed them because the machine isn't strong enough, 2) MRI machine missed them because MS protocol wasn't done and the slices were too thick; 3) MRI machine simply missed them because they were too small; 4) MRI machine missed them because you had new activity which may not have shown up yet; 5) MRI wasn't done of the right area when the lesions are (cervical spine, spine); 6) too early in the disease process; 7) you have a mimic disease--not MS; 8) radiologist misread film (yes, this does happen--probably not that frequently, though . . . get copies of MRI); 8) lesions can be invisible on MRI.
Here's two good links from the Health Pages to look at:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-MRIs-Show-Lesions-in-MS/show/23?cid=36
Good for you for changing your GP and standing your ground! I hope answers for your symptoms get here quickly!
Deb
Thank You Jen673, me too...Its been very frustrating. All I want is to figure what is the underlying cause of my symptoms that way I can possibly find some sort of treatment or diet or whatever...I will do whatever it takes b/c I would like to have some sort of quality of life.
Because of the shock feeling I would try to get the MRI of your cervical spine too. That's how I got diagnosed surprisingly quick. After that I had a brain MRI and lesions there too so with both showing lesions I was diagnosed by my MSNeuro.
Doctors are very frustrating. I feel your pain. I don't know why soo many don't dig deeper to find answers!
Hope you can get some answers and relief soon :)
Jeny
Doctors are very frustrating. I feel your pain. I don't know why soo many don't dig deeper to find answers!
Hope you can get some answers and relief soon :)
Jeny
Honestly, I just don't understand how I can have so many symptoms and nothing show up on the MRI. Then the doctors act like its no big deal but I am suffering and have no quality of life anymore with this constant rocking vertigo that never goes away. It obviously has something to do with my brain because I have a tremor in my left leg that I never had before all my symptoms started. It's so frustrating, time consuming and financially draining and not to mention to sit and suffer and not know why!
I just changed my GP due to the last one threatening to put me in the hospital for a psych evaluation. She knows there is something wrong and has the proof but this was answer to my problems....YEAH don't think so. This is absolutely not anxiety! I can feel there is something not working right in my body...anyways if it was anxiety then my blood pressure wouldn't always be so low. (Around 113/70)....Don't pass that bull on me just because you don't want to investigate or know what it is. Don't look at me and act like its my fault that you don't know. That is the most frustrating part of this whole thing ... Dealing with the DOCS. I bet if us patients were able to order all the testing that we thought we needed we would get some sort of answer....UGH! Sorry I just had to vent! Hopefully we will get some answers soon though... Keep me informed.
I just changed my GP due to the last one threatening to put me in the hospital for a psych evaluation. She knows there is something wrong and has the proof but this was answer to my problems....YEAH don't think so. This is absolutely not anxiety! I can feel there is something not working right in my body...anyways if it was anxiety then my blood pressure wouldn't always be so low. (Around 113/70)....Don't pass that bull on me just because you don't want to investigate or know what it is. Don't look at me and act like its my fault that you don't know. That is the most frustrating part of this whole thing ... Dealing with the DOCS. I bet if us patients were able to order all the testing that we thought we needed we would get some sort of answer....UGH! Sorry I just had to vent! Hopefully we will get some answers soon though... Keep me informed.
The road to diagnosis can take many shapes, many doctors, and sometimes many years. Or it can be completely straightforward and rapid. Or it can be anything in between! There's no real 'typical' when it comes to diagnosis, unfortunately.
As has been mentioned, contrast can help indicate the age of lesions and current disease activity, but I was diagnosed before I'd had one with contrast. Lesions will still show up.
On the right of your screen you'll see a section called Health Pages. These are filled with information that can be particularly helpful when running the pre-diagnosis gauntlet.
As has been mentioned, contrast can help indicate the age of lesions and current disease activity, but I was diagnosed before I'd had one with contrast. Lesions will still show up.
On the right of your screen you'll see a section called Health Pages. These are filled with information that can be particularly helpful when running the pre-diagnosis gauntlet.
Been at it a year and three months and still no diagnosis. I've had MRIs with and without contrast that show spots on my brain, but neuro says they're "nothing". Hoping to get a higher powered MRI of my cervical spine sometime soon. (I have screws in my neck that make it really hard to get a good shot of the area.)
I get what you're going through. It stinks to suffer and not know why. :(
I get what you're going through. It stinks to suffer and not know why. :(
I forgot to answer your first question :-)
From first GP visit to confirmation by second MS specialist was about 10 weeks, and yes my lesions showed up on my first MRI.
From first GP visit to confirmation by second MS specialist was about 10 weeks, and yes my lesions showed up on my first MRI.
Hi DP- sorry that your having a rough time of it. I know that having no answers can make matters worse.
An MRI done without contrast will show all lesions, old and new. The contrast agent, when administered, will cause the new lesions to enhance, or light up.
LP's are usually done to confirm clinical (physical exam) and MRI findings. They are generally used as a first line diagnostic test.
What did the neurologist say about your leg tremor? If it's possible you might want to see an MS specialist, to rule it in or out.
Kyle
An MRI done without contrast will show all lesions, old and new. The contrast agent, when administered, will cause the new lesions to enhance, or light up.
LP's are usually done to confirm clinical (physical exam) and MRI findings. They are generally used as a first line diagnostic test.
What did the neurologist say about your leg tremor? If it's possible you might want to see an MS specialist, to rule it in or out.
Kyle
I have all sorts of symptoms that I believe point to MS but no I am not seeing a Specialist for MS. I'm just seeing a regular neurologist. I have muscle twitches, tremors, rocking vertigo, I have had electric shock feelings go up my back and sometimes it feels like someone is pouring cold water down my back. I have even been to the Mayo Clinic in Florida to try to get answers but the only thing that shows up Neurolgically is a tremor in my left leg through a EMG. When I had my MRI back in November in the ER they told me if I had it, it would have shown up other lesions that were old but from what I have read about MS that is not necessarily true. I am getting ready to turn 30 and I know that this could be a possibility but I don't want to wait forever to get a diagnosis. Do you think it would show up if I had a lumbar puncture now if I had it? I have four beautiful children that are the joy of my life and it has been a very hard past 6-7 months since this started and I just want to put a name to what is going on and maybe some sort of treatment.
Thanks for responding so quickly....it means a lot!
Thanks for responding so quickly....it means a lot!
It took 2 years and 4 MRIs all with MS lesions to be diagnosed with MS. I had to have a positive LP as well for my MS Specialist to diagnose me with MS.
Are you being followed by a Neurologist who Specializes in MS? Yes you could have a MRI with contrast six months out. Also it needs to be MS protocol not just with contrast.
Alex
Are you being followed by a Neurologist who Specializes in MS? Yes you could have a MRI with contrast six months out. Also it needs to be MS protocol not just with contrast.
Alex
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