MS and connection to other infections

[mathgirl24]

I have not been diagnosed with MS but currently have a diagnosis of CIS (clinically isolated syndrome). I have one non-specific lesion and a normal LP.

I also suspected Lyme so I went to a doctor that specializes in alternative medicine and tests/treats lyme. The Lyme test came back negative even though I showed 2 bands (they look for 5 bands to be positive). So it's not ruled out but not as likely.

I did have high IgG for Epstein Barr virus, Chlamydia pneumonia, and Mycoplasma pneumonia. All of these have been associated to MS. Does anyone have any knowledge or further information on this?

They want me to start a regimen of supplements and herbs but these are really expensive and all out of pocket. I'm really not sure where to go or what to think from here. Does anyone else find any relief with supplements/herbs?

[Poolwatcher]

I would find an MS specialist neurologist. They will follow you over time. There has been recent talk of treating CIS with MS drugs.

[Temagami]

They just changed the diagnostic criteria for MS- did you get the CIS dx before or after this change? I was initially diagnosed with CIS but with the new standards would have received an MS dx from the get go.

[pennstater]

Before starting on herbs/supplements, review with your neurologist. Some may be harmless, some can cause symptoms themselves, and others, can be dangerous for an individual.

Also, as pointed out, it is recommended that CIS be treated with medication that is designed to prevent/minimize disability. You will see these referenced as a DMT or DMD (disease modifying treatment/disease modifying drug).

[mathgirl24]

I don't think I fit the new criteria either. My LP came back normal.

[KoKo]

Hi mathgirl24

In a previous post (on January 4) you posted:

"There was nothing found from my LP to indicate anything. Everything came back normal. So I'm still in limbo which is frustrating. He did say he would classify it as a clinically isolated syndrome and use a watch and wait approach. I'll go back in 3 months for follow up and repeat MRI in 6 months."

I realize that it's frustrating for you, and not easy to do, but why not wait for your follow up appointment in 3 months? It really isn't that far away.

If things look different, or have changed clinically, your neuro may get the repeat MRI scheduled for sooner than 6 months.

Take Care

[mathgirl24]

They aren't really sure if it could be MS or Lyme. The neuro doesn't specialize in Lyme disease so that's why I went to the other place that does to get their opinion on that possibility. Then I was told that I have these other infections but they want to treat me with supplements and herbs that are most likely out of pocket expenses that I can't afford.

They are integrative medicine. They said that it still could be Lyme or MS or these other infections causing the issues.

I would really like to at least not feel so tired and fatigued most of the time. I still work full time and have 3 kids. I'm really struggling. I was just really hoping to get some kind of answers so hopefully I could find a treatment that helps. But I feel more confused than ever.

The PA at the neuro didn't want to give me and meds unless they were sure of the MS diagnosis. I guess maybe because Lyme is still a possibility that he didn't want to start any meds?

It just seems like there is so much conflicting evidence, opinions, and advice that I don't know what to believe.

[SNOOPY]

Hi mathgirl24,

I have one non-specific lesion and a normal LP.

From a previous post you wrote:

MRI report says findings are abnormal but nonspecific, typically attributed to prior trauma/inflammation/infection, or chronic ischemia associated with migraine/atherosclerosis. Also consider demyelinating disease, although the findings are not pathognomic for multiple sclerosis.

The MRI report doesn't indicate MS for your non-specific lesion and all testing as been negative. It's always good when a Neurologist follows a patient as yours is. Did you Neurologist say you have CIS of Multiple Sclerosis or just that what you currently have is CIS?

As others have already said, if you have CIS of MS you have the right to the medications used in treating MS. However, CIS not specified could be you have had a CIS of some unidentified cause and doesn't necessarily mean CIS of MS.

As an example; quite some years ago my sister had Optic Neuritis. I told her to let the Ophthalmologist know her sister (me) has MS. As soon as her Dr. found out she was immediately sent to a Neurologist for testing, specifically for MS. Thankfully all of her testing came back normal. She was given a diagnosis of CIS of Optic Neuritis which is different from CIS of Multiple Sclerosis.

[mathgirl24]

As far as I know it is not specified to anything. I didn't know that was even an option. The neuro did look at the MRI as well as the radiology report. He did say that the CIS event could become clinically definite MS and it may never happen again. And since I have a normal LP the odds are less likely that it becomes clinically definite MS but not there is still about a 5-10% chance.

[Poolwatcher]

If I was in your situation, I would get another opinion. If you get another opinion, be sure it is with a neurologist who is an MS specialist. My lumbar puncture was also normal. I have multiple sclerosis.