Please help with any insight or advice

[Certifiedsarah]

I was diagnosed with MS in 2010. Several people in my family have been diagnosed with Lyme. All of my test came back negative including lumber puncture. Below is my latest MRI result. EXAM:  MRI BRAIN WITHOUT AND WITH CONTRAST

HISTORY:  Multiple sclerosis diagnosed in 2010. Numbness in hands and his neuropathic pain on the left side of the body.

TECHNIQUE: Using a 1.5 Tesla magnet, multiple pulse sequences were obtained before and after intravenous contrast administration.

Contrast: The patient was injected with 13 mL Dotarem.  No reported adverse reactions.

COMPARISON:  Brain MRI 6/6/2014.

FINDINGS:  There is unchanged appearance of focal area of white matter T2 prolongation involving the right centrum semiovale extending to the posterior margins of the right internal and external capsule. Unchanged subtle linear FLAIR signal seen in the left parietal lobe extending to the atrium of the left lateral ventricle, which may represent neuronal migration tract. No new white matter lesions are seen. No evidence of diffusion restriction or abnormal enhancement to suggest active demyelination. No mass, swelling, hemorrhage, or extraaxial collection is seen. No acute or subacute infarct. The structures at the craniocervical junction are unremarkable. The pituitary fossa and the parasellar area have a normal appearance. There are normal flow voids in the major intracranial vascular structures.

There is no abnormal enhancement.

Stable polyp versus cyst in the right nasal cavity. Minimal fluid in the bilateral mastoid air cells unchanged.


IMPRESSION:  No significant change from prior study. Stable T2 hyperintense white matter focus in the right corona radiata. Unchanged linear signal in the left parietal lobe which could represent a neuronal migration track. No evidence of active demyelination.    

[JackieCalifornia]

Welcome to MedHelp Lyme -- and sorry you are going through all this.  I'm not medically trained, nor am I aware of anyone here who is, but many of us have been through the medical community's confusion and denial when it comes to Lyme disease and other infections often carried by the 'Lyme' ticks.

That said, the docs who did the testing on you sound like they are focused on MS, and since that is not an infectious disease like Lyme is, the doc who ordered the recent tests may not have considered Lyme as a possibility:  Lyme just isn't on that doc's radar screen of possibilities, or that of the doc who ordered the MRI.  

I'm NOT medically trained at all, but perhaps these recent tests were focused on MS, and that order may have come from the docs you saw recently.  If so, then perhaps Lyme was not even considered as a possibility.  Lyme gets overlooked a lot, because the standard medical approach to Lyme is that it is rare, hard to get, and easy to cure ... so there is not much attention to the possibility of Lyme.  Dunno.

Have you considered consulting an MD who is a specialist in Lyme disease?  There is a big split in the medical community about how serious Lyme is (or not), how common it is (or not), how to test for Lyme accurately (the older tests still used by many MDs are often not accurate), and even if diagnosed with Lyme, the MDs may use older and less effective treatments (if treated).

If I am reading your underlying question correctly, I would find a Lyme specialist for a new work up.  I personally went through *20* highly educated and experienced MDs when I was ill with Lyme, and it was only Dr #20 who said to me, "I would say you have Lyme disease, but you don't like sick enough to me" -- and as he said that, he was reading my *positive* test for Lyme.  

Bottom line:  I had Lyme, and the test said I had Lyme, but the doc ignored all the evidence.  Nice, huh.  Fortunately for me, I had an old friend who once had had Lyme, so I took the possibility seriously and took copies of all my test results to a Lyme specialist without delay.  If your recent doc(s) didn't give you full copies of all your tests, you are (so I understand) entitled to *full copies* of them, and not just summaries.  What a Lyme specialist might see in your previous tests could be quite different from what the previous doc perceived.

If you need help finding a Lyme specialist, try searching online for something like

                         maryland lyme disease support group

or even just

                         maryland lyme disease

and see what you get.  Some states don't believe much in Lyme, and in those areas, docs often don't want to be associated with being a Lyme specialist, so you may need to snoop around a bit online to find a Lyme specialist near you.  It really won't take long, tho, and it's definitely worth pursuing.  If you don't actually have Lyme, a Lyme specialist will likely be the first to say so, but may have other ideas and approaches to figure what you *do* have.

I would also take with me the test results etc. you posted above here, so it gives the Lyme doc you see a second look at the possibility of MS and put that into forming a whole picture of your situation.

There is a serious split between MDs who think Lyme = the sniffles and MDs who know Lyme is serious and needs careful diagnosis and treatment.  After my dance with 20 MDs, finding a Lyme doc was wonderful!  I finally knew what I had, was confirmed with Lyme and another infection the 'Lyme' ticks often carry, and got treated and got well!  It's now been almost ten years since I had Lyme and got rid of it, and it was absolutely well worth doing.  

Lyme won't go away by itself, so finding a Lyme-specialist MD (regardless of whether the doc is a general practitioner or a specialist in some field) is definitely worth doing ... and Lyme won't go away by itself.  

There is a voluntary group for MDs who *do* believe in the seriousness of Lyme and other infections the 'Lyme' ticks often carry:  the International Lyme and Associated Diseases Society (ILADS for short; pronounced 'EYE-lads').  As you are looking for an MD to diagnose and treat you, consider finding an MD who is a member of ILADS, since they are often the most up-to-date in the field.

If you search online for -- ILADS Lyme -- you will likely find the link to it quite easily.  If you need help, tho, let us know ... and let us know how you do!  Best wishes for your renewed health --