I was diagnosed with Clinically Isolated Syndrome about 2 weeks ago. I currently reside in Florida but grew up on Long Island. About a year ago I went for a jog. I came home and my left hand was numb. I went for a MRI and they saw 2 lesions on my spine. They referred me to get a MRI of my brain. Meanwhile I got pregnant so I put it off. After I had my daughter I went for the brain scan. It came back with inactive lesions on my brain. Since I had my daughter my numbness went away and I have no symptoms of MS. Of course I feel tired and I have depression/aniexty issues, but alway blamed post pardom, since she's my 4th child. I've been reaching and came across some articles about Lymes Disease. My neuro never sent me for a spinal tap or any other testing. I have an appointment with him tomorrow and he wants to start me on meds right away. Am I crazy to think that I don't have MS? I did live on Long Island most my life and there is a chance I couldve been bitten without knowing. I'm not in deniel about MS, I think Ive accepted it at this point, but I want to make sure that I don't have something else before I start treating it with meds. Any advice or imput would be so helpful and appreciated!!
Lyme disease is one of the differential diagnoses that should be ruled out early while testing for Multiple Sclerosis, it was one of the first tests I underwent during my initial flare. The two diseases can have very similar clinical presentations.
Ask your neuro if indeed you were tested for Lyme. And it is certainly your right to express your doubts about the diagnosis, in fact, it's a good idea to have your neuro explain how he came to make the diagnosis (and why without doing a lumbar puncture). Though an LP is part of the MS diagnostic criteria, a number of neuros don't bother with it. If you wish to have an LP, it is a reasonable request to make; only 5-10% of MS cases have a negative LP result, so it's likely the test would confirm the dx.
Ask lots of questions tomorrow until you're satisfied that your doc did what was necessary. Hope you'll let us know how that appointment goes.
I had a similar experience over the last few years. Diagnosed with MS, but not really fitting into that diagnosis for a number of reasons. I searched for answers, eventually learning of Lyme after several others in my family were diagnosed (we live in Lyme-endemic upstate NY. I found a specialist who treats Lyme people almost exclusively. Extremely knowledgable doc. I've been doing well on antibiotics, and have steered away from the MS drugs. At his suggestion, I followed up with a Neuro just to be on the safe side. I had opted out of treatment for a few months to give my body a break. At the Neuros recommendation, I had an MRI which showed new lesions on my spine. According to my Lyme doc, this doesn't happen with Lyme disease. His belief is I have Lyme induced MS. And while this will be my lot in life, I know in my gut the antibiotics are helping to keep me on the right track.
If you have Lyme as an underlying condition, and have had it for a long time, I think the body gets to a point when it simply can't distinguish between good and bad and starts to launch the attacks. That's where the antibiotics come in handy. After 3 years, I'm no worse for wear than I was when I was first diagnosed. I've radically changed everything I do though, just to make sure I'm as healthy as a person can be. I would strongly encourage you to join a Lyme group to find a Lyme-literate MD in your area. You may have to travel (most do), but it may prove to be beneficial in the long run.
There is also a group at Vanderbilt University who have some compelling research that lends to another infection (CPN) as a causative factor in many MS diagnosed patients. There protocol is similar to the Lyme treatments.
I also want to point out that this is a confusing disease. There are so many issues that are yet to be explained. I never bought into my body attacking itself for no reason. I believe there's an underlying issue causing the MS. I'm not alone in is thought either; there's a large subset that believe the same.
wow thank you so much! If I do in fact have Lyme, then maybe I do have Lyme induced MS. I have been in florida for 4 years now, so if I did get bite then it was several years ago. I'm going for a spinal. Hopefully that will give me some more answers. My is spinning, because I feel like Lyme is very difficult to diagnois and the test might now come back as accuate for either MS or Lyme. Should I suggest to the doctor to start on anitbotics to see how my body reacts? That should at least rule it out right? So confused!! Wish there were ways to test for these diseases that were more accuate. I hate taking drugs for any reason. But I will if it's going to help me.
Unfortunately, Lyne isn't that easy to catch. That's one of the reasons I believe I'm in this boat. The testing is inaccurate and the controversy over the disease has gotten very politicized. I tested negative 7 times over the years. I believe I was bitten 2007 of earlier, but it's hard to say.
Unfortunately, the spinal tap may not be definitive either. I've had two... Neither led to my diagnosis of Lyme. I found a savvy infectious disease doc who knew how inaccurate the tests are, and started me on antibiotics. It wasn't until then that I knew I was on the right track.
And honestly, I'm not big on putting stuff in my body either. To me, antibiotics were a better choice than the current choices for MS. I strongly suggest joining a few other groups online if you have the time, Yahoo offers some great Lyme forums and MS have a great site called This is MS. There are a bunch of supportive folks out there who can help guide you throu this process. Finding a doc to give you antibiotics will be a challenge. According to the CDC, late stage Lyme is rare. Docs follow that, and will dismiss you quicker than not. I had to find my specialist through one of the Lyme support groups on Yahoo.
I do caution you in this regard though.. Trust your gut. People on both sides of the Lyme/MS club tend to sway you in one direction or another. These past three years have been nothing short of a roller coaster ride for me between these two diagnosises. But you'll make it through.. The beginning is the scariest, so make sure you have a good support system. And if you don't, try to find one online.
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