New unexpected development

[amalia66]

First of all, I want to thank jreagan70 for a very good explanation regarding steroids. Yesterday, I went to a neurologist about my thoracic spinal cord MRI, and my neurologist shocked me. The MRI results showed that I now have a big thoracic spinal cord lesion, T6-T9. I didn’t notice that there was a radiologist note “question MS.” I was diagnosed with MS in 2000. The neurologist, looking at my MRI at the time, told me I actually had MS probably since adolescence because of the presence of many lesions. Currently, I’m 51, which means that I must have had MS for at least 35 years, and all of my lesions were only in the brain, never in the spinal cord. All of my prior MRIs stated that the lesions were consistent with MS.

Yesterday, my neurologist told me that she no longer thinks it’s MS, but that it’s actually neuromyelitis optica, because I have a large lesion in my spine. But is that possible to have one type of MS for 35 years, and then have it turn into a different type? Interestingly, my neurologist told me that the drugs for relapsing/remitting MS don’t work for neuromyelitis optica. Now she wants to send me to a big MS center for further testing.

I’m confused about everything and don’t know what to do.

[Mamabug]

... Now she wants to send me to a big MS center for further testing.

I’m confused about everything and don’t know what to do.

Yup; that's what you should do -- go to a big MS center for further testing.

Sometimes, an accurate dx takes awhile. An MS Center could be helpful in either ruling in, or ruling out, MS. Some MS Specialists also see patients with other neurological illnesses that have similarities to MS, especially if those other illnesses are less likely to have their own specialists.

[jreagan70]

But is that possible to have one type of MS for 35 years, and then have it turn into a different type?

Neuromyelitis optica is NOT a different type of MS. It's a completely separate disease. It's a demyelinating disease and, as such, causes many of the the same symptoms as MS, but the antibodies and course of the disease are different.

NMO and MS are treated differently. The drugs for MS don't work for NMO, and the use of steroids is different. Unlike in MS where steroids are optional, high dose steroids are a foundation of treatment for NMO, even when the person is on immunosuppressant and/or chemotherapy treatment.

Based on that, if your neurologist thinks there's a chance you have NMO instead of MS, she should have prescribed high-dose steroids for you immediately. Because in NMO, steroid treatment does make a difference in outcome. Unlike in MS, steroid treatment in NMO can prevent permanent nerve damage and aid recovery.

There's no halfway on NMO. If NMO is suspected, it should be treated with steroids ASAP. A delay in treatment would have to indicate that your neuro isn't as up on NMO as she thinks she is, or she doesn't really think you have it but needs a justification for sending you for further evaluation of a large cord lesion.

Size isn't the only difference in cord lesions between MS and NMO. NMO lesions tend to be transverse, meaning that they affect both sides of the body at the same time. In addition, while MS tends to start relatively slowly and worsen over time, NMO tends to have its severest attacks early in the course of the disease. (It doesn't sit around for 35 years.) That's why people with NMO tend to be paralyzed or die early in the course of the disease, which isn't the case with MS.

Also, NMO and MS are not known to exist in the same person. But since you have a large cord lesion and there's a question about why, you absolutely need to be worked up by an expert in neuroimmunology who is familiar with both MS and NMO.

That doesn't get your neuro off the hook in deciding about how suspicious she is about NMO. If she's looking for another opinion about a large cord lesion and is considering NMO only in passing, just to cover all bases, an argument can be made for that. But if she really suspects NMO, the guidelines call for high-dose steroid treatment now.

It's understandable that you're confused -- your neuro should be giving you more definitive guidance.