Can someone help me understand this?

[kkandori]

I got this news at the doctor yesterday. I'm not looking for a diagnosis, just someone to explain what this means in simpler terms.

My doctor explained it to me, but I must have spaced out.

I don't have lesions, but how is what I have different than lesions?

I went to the doctor because I can barely walk. And when I walk, I look like I'm drunk. I have foot drop. I had optic neuritis twice. My blood work is fine and I was tested for like anything. The only thing I had was high ANA levels.

Here's a link to a photo hosting site with an anonymous bit of my MRI report.

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Thank you for reading.

[Mamabug]

kkandori

Welcome to MSWorld. Even if I saw your photo, I'm not knowledgeable enough to answer your question about the difference between lesions and what you are exhibiting.

If you'd like to try again, you may post the URL link to your photo in your profile, rather than in your post. Then, maybe someone with more knowledge than I have, will come along and provide some feedback for you.

[SNOOPY]

Hello kkandori and welcome to MSWorld.

Even my own MRIs are confusing to me, you really need to be a medical professional to even understand what your looking at.

There is usually a MRI report which can be more helpful. The "impression" section gives more information with the possible findings and possible reasons for those findings. But, it is not a diagnosis.

[hunterd]

WELCOME TO MS WORLD!!
the only way I was even remotely able to understand was to read the impression letter. I had no idea what I was looking at, nor did I know what I was looking for. I did exactly what Snoopy said.

[jreagan70]

Hi kkandori:

I don't have lesions, but how is what I have different than lesions?

Where did you get the impression that you don't have lesions? The bit of the MRI report you posted says, in tech speak, that you do have lesions. "Abnormal signal" means that there are abnormalities in your brain (lesions, which just means "something that isn't supposed to be there") that are causing the electromagnetic representation of those areas (the signal) to be abnormal.

Regardless of the technical description, the Impression section of the report is what you should be guided by:
"These findings are nonspecific, however, the perpendicular orientation of the periventricular abnormal signal suggests possible multiple sclerosis. Clinical correlation and follow up are recommended."

Your radiologist appears to be conservative. For many radiologists and doctors and people in the know, the perpendicular orientation of the abnormal signal takes it out of the range of nonspecific (nonspecific usually refers to just little round spots that can't be correlated with anything specific) and puts it into the range of more specific, because lesions perpendicular to the ventricles tend to be characteristic of MS. Nonspecific lesions associated with migraine and ischemia (lack of oxygen due to vascular changes) tend to be roundish, which means they can't take on a perpendicular, directional orientation.

Two episodes of optic neuritis, foot drop, and lesions (represented by MRI signal abnormalities) that are perpendicular to the ventricles are very suspicious for MS.

What you should do next depends on what your doctor said during that time you spaced out.

Is the doctor you're referring to a neurologist? If not, you absolutely need to see a neurologist, preferably an MS specialist.

Did the neurologist say what the next steps are? There are other tests that can be done that can help confirm a diagnosis of MS -- evoked potentials and a lumbar puncture to test your cerebrospinal fluid. Have you had those tests or are you scheduled for them?

If your neurologist is a general neurologist and not one who has extensive experience with MS, then your next step would be to be evaluated by an MS specialist, or at least a neurologist who has extensive experience with MS.

Your local chapter of the National Multiple Sclerosis Society (you can search for it at www.nmss.org) can provide you with a list of names of neurologists in your area who have extra experience with MS. The NMSS doesn't recommend doctors -- they only provide contact information -- so it's no guarantee that the neurologist won't be a dud. But it does increase your chances of finding a neurologist who knows enough about MS to diagnose and treat you properly if you have MS.

You can also go to the website of the Consortium of Multiple Sclerosis Centers (www.mscare.org) and use the search feature to see if there's an MS center near you. In the menu on the left side of the home page, select Directories > MS Centers, then enter United States and your state on the next page.

ANA isn't associated with MS, but could indicate an additional condition that might be causing symptoms. Regarding your elevated ANA, it depends on how high "high" is. A little elevated can and does occur in normal, healthy people and doesn't mean anything. So depending on how high "high" is, an evaluation by a rheumatologist might be in order. As a matter of fact, a full rheumatology panel should be part of a workup for MS to rule out, or give proper attention to, other inflammatory conditions. I've had a full rheumatology workup at least twice.

It's also important to know the actual values of your tests for vitamins D and B12. "Fine" isn't specific enough, and a low level that might be acceptable for a person who has no symptoms and a normal brain MRI is too low for someone with your history. So, it's a good idea to refer to your lab results and find out what those actual levels are. For sake of argument, IF you have MS, research shows that those levels shouldn't be any lower than the middle of the normal range.

So, is your neurologist one who you believe has enough experience with MS to follow up with, or are you ready to see an MS specialist? If you're sure that your neurologist actually said that you don't have lesions, then you should start looking for an MS specialist NOW. If you're not sure what your doctor said, then you really should get a clarification and the plan for what to do next.

[kkandori]

Thank you for the replies everyone! Sorry about not knowing how to show a photo.

Jreagan70, I want to reply to a few things you said.

I went to a family doctor, because I'm currently on Medicaid. Seeing a neurologist is something that has been so difficult for me. I have been to many emergency rooms only to leave with nothing. No referrals and no tests. The last doctor was at the ER of the best trauma hospital in my state. He told me I was likely psychosomatic. He didn't even check my blood. He referred me to a neurologist but ended up not actually setting the appointment and I was turned away.

So I'm dealing with a family doctor who probably hasn't seen much MS. But she believes that I am telling the truth. Which is awesome. She is trying her hardest to get me into a neurologist. I don't think she herself knows what the next step will be.

I had a rheumatoid factor test and sed rate and they were both normal. I had my vitamin d level tested and it was 30.6 which is normal supposedly. I have actually been taking 400 mg of vitamin d per day in the last 6 months or so. I did think maybe that would make it higher. I'm thinking of going up to a higher dose since winter is coming.

Thank you so much for the awesome reply. I guess I just need to sit tight and hope a neurologist sees me soon.

[kkandori]

Are my lesions or spots or whatever you want to call them lol...are they what as known as Dawson Fingers? I keep seeing that term when I try to Google this.

[jreagan70]

Hi kkandori:

Yes, being on Medicaid makes everything more complicated.

Now that you have medical evidence that you need to see a neurologist, there a a couple of things you might try.

Medicaid is overseen by the same federal agency that runs Medicare. But because Medicaid is run by individual states, patients have to work through their state Medicaid agency. The recommendation of the federal agency is for you to contact your state (or local) Medicaid office, case worker and/or medical group and tell them directly and proactively that you need a medical appointment and haven't been able to get one. That might or might not work easily.

You might also contact your local chapter of the NMSS to ask them if they have any experience with helping local people with MS get appointments with neurologists in your area who take Medicaid. If they do, they might be able to direct you to who to contact. The possible advantage is that they can steer you toward an MS specialist and not just a general neurologist who might not know what to do about your case. As you've found, the more specialized a specialist is, the less likely they are to take Medicaid, or even Medicare and some other insurance plans. Some specialists don't take Medicaid or Medicare at all, and the elite specialists in many fields don't accept any kind of insurance.

You might also try to set up a neurology appointment at a university medical center. Large medical centers associated with medical schools are often referral centers and have agreed to be Medicaid providers. This is something you might have to do on your own, but your Medicaid case worker might be able to expedite it and/or you might get tips from the NMSS office. Again, this might help to get you in with a neurologist who know about MS and neuroimmunology, not just a general neurologist who doesn't.

Another option is to go the medical center's community care or charity care office and see if you can be seen under their charity program even though you're on Medicaid (sometimes Medicaid rules forbid that or the Medicaid rules are so restrictive that hospitals don't want to get involved in trying to bend the rules).

Your experience with ER doctors actually isn't unusual. ER docs specialize in handling emergencies, not in working up patients for chronic diseases, so it's hit or miss about finding an ER doc who has the time or knowledge to do that.

And it sounds like your family doctor is doing the best she can with a GP's limited knowledge of specialty diseases and the constraints of Medicaid. Is it possible for her to refer you for physical therapy and possibly get you an orthotic for your foot drop? Or maybe I should say, is there a chance that Medicaid will cover those?

Your vitamin D level is OK for a person of average health. But for MS, it's recommended that the level be at least 50. It might take a supplement of 1000 IU per day or more to get you there. Even if you don't have MS, there are still good reasons for you to be closer to 50. So while you're waiting to get an appointment with a neurologist, tending to your vitamin D level is a proactive thing you can do on your own.

I wish you all the best in getting the specialty care you need. It might be a long road, so hang tough!