Has anyone here had normal MRI for years with symptoms and then finally a diagnosis?

[Udkas]

I was wondering if anyone on this forum who has had neurological symptoms have had a "normal MRI" on a T3 machine and then maybe much later down the track have had an MRI which has confirmed the MS diagnosis.

I have just had tons of MRI without anything showing and I am wondering if it is worth having another one or should I just give up.

I noticed on the forum that there was someone who got a diagnosis after 12 years of symptoms but I wondered if in that time they actually had an MRI.

Cheers,
Udkas.

[jumpinjiminy]

I want to believe this was just another bump in the road, a very long one, but will eventually clear up and go away like they have been doing since my 20s. Like you, I've been lucky to have a very mild course of mystery illness. That being said, it was severe enough to put big limits on my productivity in the professional world. I was even fired from a job because of the fatigue.

It was devastating, and the doc I had tried antidepressants. When I got irritated that they were making the sleep and fatigue issues worse and insisted I wasn't depressed, he said he hadn't ruled out bipolar disorder yet. What he didn't know, and didn't ask, was that I was having trouble with my vision as well, had developed a head tremor that he never noticed, and I'd lost some color vision.

That was over 15 years ago, and was the last time I ever complained to a doctor about the fatigue. It was also the last time I tried working a full-time job with set regular hours. And I went on to buy a blue car that everyone else to this day swears was purple. LOL

It was BLUE!!!

I'm tired of feeling like a nutcase, PITA, whining, weak woman. I'm ready to don the old armor and head off to war with the world like I've always done.

After all this time, what are the chances that this is anything other than an accumulation of minor environmental insults?

All of my MRIs were done on 3Ts with contrast. I just think they waited too long from the presentation of symptoms in ordering them. But even so, they tell me the likelihood of this being MS, after 20 years of symptoms with no lesions on MRI, not even old ones, is very, very low.

[nikki861]

I have had so many MRI's I've quit counting! The last one being 5 weeks ago. This one showed large lesion. This has been ongoing for 10 years. Tomorrow I get the dx. As most, I dont want MS, but I need answers and treatment!

I am thinking that there would be something from the LP. Shall see tomorrow. I just hate that it takes this long to be dx. Not just for me but for all of us going through this. Especially, when everyone around you thinks you are crazy or just complaining........so what do we do we stop saying anything and push our bodies to the limit! I know that is what i have been doing..........

Beth

[Udkas]

Hi There,
there is many reasons for why "YOU SHOULD BOTHER", apart from the fact that if you know something is wrong you should keep getting tested.

Spinal lesions are more difficult to detect on MRI, imaging of the cord is still not perfect.  Lesions can heal and disappear.  They have proven on routine MRI that some people will show new lesions that they have not even had symptoms for, so MRI does not always account for what a patient might be feeling or correspond I should say.

I think routine MRI should be done for any one that they suspect MS with, like a routine follow up in 12mths or 6mths or even 2 years and of cause again if there has been another attack.  It can also depend on the MRI machine too, was your MRI done on a T3 with and without gadolinium.

These days they have disease modifying drugs that can certainly alter the course of MS and in this case the SOONER you are on them the better.  I am sorry you have to pay for your MRI, this would make it difficult.

I have had 7 MRIs and although I feel it's way too many I know something is wrong, so if I get the option I will make it one more to my collection as it has been over 2 years since my last spinal and over 1 year since my last brain.

Cheers,
Udkas.

[jumpinjiminy]

Your MRIs didn't show lesions either?

My first one had a maybe in the c-spine, but it was a brain MRI and only showed up in one view. It wasn't until two months later after seeing an MS specialist who insisted that needed MRI'd from the c-spine, that my GP ordered it because the neuro refused. Nothing showed up. This was 3 months after the onslaught, which was pretty widespread. By that time, most everything was clearing up.

I'm getting to where I don't want any more tests, neuro exams, or anything else. But then when things get stirred up for a few days ( like this last with the flu and some big diaphragm spams that scared the crap out of hubby), I get to where I want to know - what the heck is this? And can we do something to kick it's pants off already? :-P

What are the chances they'll dx anything before a major functional loss occurs? Any at all? I have this little glimmer of hope that still can happen. But at the same time, I'm sort of done spending money and wasting time on what essentially seems to be an impossibility without MRI evidence.

Things are much more stable now than at any time in the past year, so it's easy to slink back and let it roll without follow-ups, etc., until the SHTF. Why bother?

[Udkas]

As weird as this might sound I actually want a diagnosis!!  I really do want to have a name and a reason for my neurological symptoms. I feel that it would help me if I could have some conclusive answers and reasons for why my body lets me down.
Time for new MRI I think.

Udkas.

[Quixotic1]

Yes, you are right.  That situation of being diagnosed with not MRI lesions doesn't happen frequently, but it does happen and we have seen it here on the forum.  It is not at all an impossiblility.  My own story shows that.

Quix

[Quixotic1]

WE had a member for a long time named T-Lynn (also youngatheart) who had Optic Neuritis as a young adult, was told she might have MS and iffnored them.  Then in her forties begain having ever-increasing problems, but her MRI was negative (1.5T)  Finally at the Mayo (I think) and MRI showed significant brain atrophy and they made the diagnosis.  So her first brain lesion was atrophy (shrinking of the brain).  A few months later she had an MRI on a 3T and she was loaded with small lesions.

I think the time course of this was diagnosis in about 2006.

Quix

[jumpinjiminy]

I wanted to thank you for asking this question. It's also been on my mind if there is anyone out there who goes without positive MRIs for years and then all of a sudden they show up or get diagnosed some other way. The lack of responses to this thread is a bit of a comfort that way.

I hope this means that possibility is slim to none, in which case having those clean MRIs despite the symptoms really is a good thing.

[Udkas]

Both you and I have had a long haul.  I do like my neurologist, but I know many on here seem to think I should get another opinion, I figure it wouldn't hurt, but I think my neuro has done all the testing he can do.  If I do have MS after all this time it has to have been a fairly benign course.  I do have a very suspicious area on MRI in my cervical (this is what the neuro told me) ..

MS would answer my hearing issues better than TM too.  I am guessing science doesn't know it all yet and I do believe I have more than one issue but seriously after all these years would there be much possibility of MS.

I just really want to know about my spasms/cramps at the moment as this is new and confusing.  A while back I had really bad lhemittes and I will mention that, if I go thru the lot I will need half a day with him and our health system is going to the pack, so I don't think that's an option..lol.

I will post after my visit and let everyone know what he has to say.
Udkas.
(thanks Nancy) Oh and I am obtaining a copies of my notes from the ENT Specialist.

[Nancy T]

Poor Udkas, you have had such a long haul! So confusing and frustrating. I hope you will be closer to answers at the end of the month. They are just SO focused on that MRI picture... but at least you have a good neuro to follow you.

[Udkas]

I have had MRI of both my brain and my spinal cord, but when  I had my initial attack they only did my brain, which my current neuro said was stupid as my neuro exam points to spinal lesions.

My last spinal MRI was normal but apparently the spinal cord is more difficult to image and my neuro says I have spinal lesions  and he says they are there but can't be detected, I know they can heal up.  I think I will push for a cervical and thoracic MRI again (undecided as I don't want to be disappointed) I have had 7 MRIs over the years, I don't want MS, but I do want an answer.

Cheers,
Udkas

[jujuminx]

Welcome!

MRI of what?  For decades I had MRI's of my head/brain on a 1.5T with competely normal findings. Still have compeletly normal findings in my head/brain.

Neuro finally ordered MRI of my spine last year, on same MRI machine and found lesions. Probably been there all along had they imaged my spine instead of my brain decades ago.

Julie