Hi Zel, and Welcome to the forum here. Yes, we do know that MRI imaging, although pretty darn good, is not perfect. Those lesions might not yet be visibile with the technology we have available but could increase in size and be seen further on. Or they may not be there at all.
Diagnosing MS is often a waiting game - wait for the evidence to appear on the MRI or episodes to happen that can be documented for a clinical diagnosis. I wish the process could be simpler so that people like you could be told "yes" or "no" to the question of whether you have MS.
In the meantime I hope the doctors will at least help you with the symptoms.
be well, Lulu
Depends. If you have a clinical diagnosis under the Revised McDonald Protocol, I guess that is where they get the statistic the 95% have lesions on MRI. So out of the 400,000 PwMS in the US, that means that 20,000 may not have lesions on their MRI. That's a big number.
The other question is "At what point in the disease?" After 20 years of "It all in your head." or "At first presentation of symptoms?"
I had a MRI done in July of last year that showed just one lesion. So my neurologist didn't diagnose me with anything. I went to a new primary doctor because in December my symptoms came back with vengeance!! They haven't gone away yet, so she ordered another MRI and a spinal tap (going to the Neurologist on 31st to get those scheduled). She also diagnosed me with MS...so I have a clinical diagnosis. But they aren't treating me with anything until I get another MRI and a LP (Spinal tap).
But I have heard of people who have been diagnosed and are receiving treatment for MS, even though they had a clear MRI.
Did they do a MRI on a 3T machine? With or without contrast? And was it just of your brain or your C-Spine and L-Spine as well? Sometimes you may not have any lesions in your brain, but some on your spine.
I am being treated for MS even with a clean MRI.....My clinical symptoms and abnormal VEP test got me diagnosed in just a few months.
Quix will point out that 95% means that 95 people out of a hundred are diagnosed with lesions. 5% are diagnosed with no lesions.
As Lulu says, you at least need to be treated for your symptoms, even if you have no visible signs of any disease process.
I forget what strength your MRI was at. And whether you've had a spinal MRI. Sorry!
Thanks to all who replied. Very interesting...
I think I had a 3T machine, spine and brain, two years ago.
There was a ****-up and the films were destroyed.(!) The radiologist's report said everything was normal. Have just booked in for another one.
I have recently had a MRI done which was negative, the neurologist said he thinks it might be bi-polar disease. The "problem" presented two weeks ago with tinnitis, vomiting and staggering around, extremely blurred vision with an ache in the back of my eye. I work in a pathology lab and after throwing up all over the ER waiting room, I had a CT scan done which was fine, the next day I went to an ENT doctor, had hearing tests which I was told were fine and that it might be Meniere's disease, an ear disorder. He did say I had nystagmus (eye jerking) and I was put on prednisone which caused me to have a manic response, but did help with the symptoms greatly. The next day I was due for an annual eye exam and once again was told everything was fine, no optic neuritis but I still am having aching in my right eye. Ok, so far so good, but what is causing these symptoms? I had some skin lesions which to me, a layman, looked like the malar rash that presents with Lupus. I also had what appeared at first to look like a ringworm or something, it grew about the size of a fifty cent piece and stayed red and ugly for a month, it is now subsiding. While looking up Lupus, I saw pictures that looked just like it, but the dermatologist said no to Lupus.
Then because of extreme shortness of breathe complicated by the fact I came down with a sore throat and a cold I was sent for a chest xray that came out ok. So, then I hit the Pulmonologist for the shortness of breathe, he put me back on prednisone even though I was so hyper on the first dose. He said I had thrush in my throat and so now I am taking a script for that too. I am utterly confounded by all of this and just happened in my searching to find this site and read some of the comments and I was struck by how kind you are to each other. I too had a long, long list of symptoms going back 25 years. The symptoms were pretty much blown off. I even got some books from amazon and was absolutely convinced that my symptoms were consistent with MS, but no one has really listened so far. To add insult to injury, I have been on meds for ADHD for the past 17 years when my son and I were both diagnosed with Attention Deficit Disorder. Any help or advise you could give me would be greatly appreciated. My job is extremely stressful and I have spent the better part of the past year dealing with an unbelievable fatique which I had thought was due to working conditions. I am now not so sure. I am having bad cognitive problems which make me fear for my job. Any help or advise you can share would be greatly appreciated. Thank you so much, Sharon
Would you mind cut and pasting your post into a new thread, that way you can be welcomed as a new member and everyone gets to say hi. The other thing is many people have sight problems and find large blocks of print very difficult to read and understand.
So if you break up your post with spaces similar to this, you will find you'll get many more responses than you would if you left it in one big block. It might also be helpful if you read the health pages, top right of your screen, the yellow icon.
Cheers and welcome..............JJ
PS what on earth lead the neuro to say bipolar, nothing you wrote indicates bipolar and did you end up getting your head space assessed to see if it was possible? BTW bipolar isn't one of the MS mimics so i'm not sure if its pertinant anyway lol cheers!
Thank you for answering my post and giving me the tips about the spacing, I was having trouble reading it myself.
I thought I had lost my posting, but found it and I will type it over in the proper place.
Think there is a correlation between stopping my ADHD meds and the flareup of bipolar, but you've got me.. Thanks again for the tips and the welcome. I still really think it might be MS.
I just thought i'd make a quick comment on the 'stopping ADHD meds and the flareup of bipolar' statement, ahhhhh if thats the dr's theory, run away! Stopping ADHD meds will NORMALLY cause hyperactivity, sheeesh thats the main reason for taking them, to stop or decompress the abnormal level of (hyper) activity.
My son was on meds for anxiety but its also used sometimes for hyperactivity, lol when we took him off them, he was on perminent fast forward. Its only now, a year off them that i can say he's calm and in control of himself, though he still has his moments lol. Sheesh even an incorrect doesage will cause daily bouts of hyper, which can easily be miss construde as mania. Its not uncommon for people to need to take the meds twice a day because of the hyper effect when the meds wear off.
Dont get me started, I could go on and on and on lol