Now, where do I turn?
 

I went to the MS specialist today. My neuro sent me to him to rule out MS. Well, because I have O-bands in my serum (though they are more prominent in the CSF) and there are no lesions on spinal cord. He says this is all indicative of it not being MS. His recommendation to my neuro is going to be: repeat brain MRI every year for the next 5 years and if there are no changes then the subject is dead in the water.

So, I guess I am back at square one. I want to thank all of you for your wonderful support and humor.

Sounds like it may be MS but just not ready to commit to that,
so we waitttttttttttt.:rolleyes: . You can wait with us if you wish..:hug:

I thought you had earlier brain MRIs that showed lesions? Add that to the o-bands and it certainly sounds like MS, I never heard of needing lesions in the spinal cord to be diagnosed. O-bands, igg/albumin ratio and lesions in the CNS, brain, spine or both. Tricky to diagnose I'll grant you, but I got my dx without lesions present in the spine.

Even got compliments on how pretty, straight and open my spine is, other than the spots with bulging disks. My spine is clear, my brain isn't. But then we both live in the south where they'd much rather dx diabetes for everything than MS.

In 2007, my brain MRI had 2 "spots", the most current brain MRI (3/2014) shows 20+"spots". The CT the ER did a year ago showed no signs of any "bleeds", so I just don't know...I do know my symptoms are not my imagination. They both seem to dismiss so much. Each of them seemed to focus their exam on different areas, like there is no uniformity. And yes, there seems to be a focus on my blood sugar. My fasting blood sugar has been running about 114-116, but my a1c is 5.3, not diabetes.

Time for me to pull up my boot straps and steel my determination and press on until I get some kind of diagnosis.

Y'all are wonderful! Thanks for being here!

To my knowledge, all they've ever done for MRIs in my case has been brain and neck, no lower. I had a positive lumbar puncture (o-bands). My symptoms for the most part were very non-specific, except for having L'Hermittes Sign and girdle-band sensation - those 2 symptoms sealed the deal, so to speak, on it being MS.

I've since had Optic Neuritis, but considering my neuro guesses I had MS at least 5 years prior to being diagnosed in 2008, I have done pretty well as far as avoiding massive progression. Though, there is most definitely progression (some symptoms now never resolve and are permanently there - mild, moderate, or severe, depending on the day).

Long story short, hearing "you have no lesions on your spine, therefore it's not MS" is maddening. :mad: I'd get a second (or even third) opinion.

don't give up. keep a watchful eye on your sx's (symptoms) and write them down. keep a sx journal which may be helpful for your dr in the future.

get copies of your test results and copies of the mri's etc. and copies of your dr's notes. start a file on yourself. this will come in handy in case something else comes up or you see any new drs.

good luck. don't be a stranger.

bddouglas, you really aren't back to square one. Square one is when the doctor tells you that your symptoms are all in your head. I think you've got their attention. Be persistent. Keep records of your symptoms. And I'd either get another doctor, or get that MRI for the next five years.

I was diagnosed with MS without any lesions on my spine, but that might have been because my brain lesions were "too numerous to count." On my MRI written diagnosis, somebody had hand written at the bottom, "Is pt at all verbal?" That makes me chuckle. Yes, I am quite verbal, and there's nothing wrong with my VOLUME DIAL EITHER.

Why are doctors reluctant to give a diagnosis of MS? I think it is an ego thing, because they HATE being wrong. It is no skin off their nose if you twist in the wind for five years for a diagnosis. But no diagnosis means no treatment. If I were you I'd go to another MS doctor for a second opinion.

If you do have MS, you need treatment as early as possible. Nearly all of us here have had to be persistent to get a diagnosis. So batten down the hatches, keep a stiff upper lip, and come to this board for all the encouragement you'll need.

bddouglas,

With me too, just like you, they are rechecking MRI yearly, no diagnosis of MS yet.
I had multiple lesions in white matter on MRI in 2011, suggestive of MS.

I was sent to a MS specialist. I have seen him twice now, he has been recommending repeat MRIs every year, just like you. I have since had MRI of spine as well. The neurologists say they are checking for "new lesions" I am now in year 3.

Like the other posters said, keep recording your symptoms.

You know this really makes me question how bad it would be to administer treatment if it's not really MS. I understand some of the medications can have severe side-effects. But we all know early treatment is best, and yet good luck getting an early dx.

It makes me wish doctors were a bit more open to possibly making the wrong call, over trying to be absolutely positive when the only way is to pretty much rule out EVERYTHING else! If it's looking like a duck and quacking like one to, why not call it a duck for now and continue testing.

How often are those ducks going to species-confused chickens? Once those nerves start demyelinizing there's pretty much nothing that can be done to correct the damage. It's like leaving a rot spot on a tree because you don't know if it's from fungus or damage, are you really going to wait till the tree dies before doing anything?

Hi Brenda,
You're probably at an important fork in the road. Many neuros will start someone on an MS therapy even if there's only been one episode that indicates MS nowadays ("clinically isolated syndrome," I think it's called, or CIS) just because the MS drugs are so much more effective if started soon after MS onset.

I wonder if anything more definite was said about the "white spots" that turned up on your MRI. If you could get hold of the radiologist's report on the MRIs you had, there's probably more information there.

If anything is said about MS or demyelinating disease, I'd think about looking for a different doctor. Or you could consult with your neuro and sound him out--see how inclined he is to go along with what the MS specialist said. He might not agree at all.

My MS was diagnosed in 1980, before MRIs, but it showed up definitely on 3 MRIs since then. All of the MRIs were of my brain only. Nothing was ever said about the spine.