Lesion on MRI, LP negative - thoughts? Neuro says no MS.

Hi all,

I had my appt yesterday with my neuro to go over my LP results, which came back negative for MS.

The only reason I even started the process of finding out if it could be MS is because I went to my GP, then to an endocrinologist, to try and figure out why I have had bouts of overwhelming fatigue. The endo ordered the MRI to check for a thyroid tumor. Well, there was no thyroid tumor, but surprisingly they did find a lesion so I was then referred to a neuro.

For years I've had numbness/tingling in my hands often - daily - and twitches and involuntary movements in my legs & arms. Then, of course, there have been bouts of the fatigue, one lasted over a month where I was pretty much useless to my family then just went away one day. I also have bouts of severe pain in my shoulders, neck and down my arms into my wrist. I get pain in my hands from doing anything even mildly strenuous, like opening a package, a jar, massaging anything, etc. I also have hyperactive reflexes as well as bouts of vertigo. All of this has been for at least a decade (I'm now 36.)

So my question is, if it's early enough in the onset of MS, could the LP come back negative and I still have MS? My MRI did show a lesion, just one, but the neuro said that could just be normal. She knows I have something going on, but with the negative LP, she's convinced it's not MS.

I'm now being referred to a rheumatologist to check for things like RA, lupus, etc.

I also have Hashimoto's, so I definitely have something auto-immune going on, but my endo keeps track of my thyroid very closely and checks it pretty often, so I don't think all of this could be just from the thyroid.

Thoughts?

Hi, it sounds like you are probably in the early stages of being diagnosed with MS. Even though you have had some symptoms now for over 10 years doesnt mean it is that easily diagnosed. You say you have a lesion (sounds like just 1), in order to give a definite diagnosis of MS you must have at least 2 lesions and quite a few symptoms (hence the name multiple). Hang in there, I think your on the right track, just go along to whoever they refer you to, all these things will be eventually ruled out and you will have a result, I'm pretty sure it will be definite MS in the end.
All the best, Lou.

Don't let that sway you from continuing to try to rule things out until you feel confident about where you are. What you don't want to happen is that you stop pursuing it and find out years from now that you in fact have MS.

Read below and I think you will understand why...

I started down this road almost a year ago. MRI with lesions on spine and brain, evoked potentials which support a dx, etc. I couldn't get a lumbar punch because I was am on blood thinner due to a heart attack I had last June. about 3 months ago my cardiologist let me stop taking the blood thinner long enough to have a lumbar punch. The test came back negative for oligloclonal banding. Also did another MRI which had no changed. At the time my neurologist told me the same thing that yours is telling you, he didn't think it was MS. about three weeks ago I started having a lot of spasticity in my legs along with some other symptoms. I did another set of MRI images this morning and the hospital gave me a cd with the images. I have new lesions on my spinal cord and brain and I fully expect a diagnosis in the next couple of weeks when I visit my neurologist.

Again, don't let the neurologist opinion deter you until you are comfortable. They are human and MS is a clinical diagnosis. I have read literature that says around 5% of people with MS do not have banding in their spinal fluid. I have seen post mortem studies though that show that number to be more like 20%. The last thing you want to do is disregard it and find out you have lost time that could have been spent treating it.

And I support getting a test for Lyme as well. This is just another step in ruling out diseases that mimic MS.

Good luck!!!