Worried about MS. Neuro says let's "wait and see"

[minnesotamom]

Hi there. I'm hoping to get some advice from those who have some experience with MS. I was referred to a neurologist, but he seemed very uninterested in my case and said that I don't look like I feel that bad. He ordered a lumbar spine MRI and then did an EMG. Both were negative, so he said we should just wait and see if my symptoms come back. I'm confused about where to go from here.

Here's an overview of my history/symptoms:
-6 months ago: Started feeling pain/skin sensitivity in right upper arm. Tingling/strange feeling last for about 5 weeks. Felt extra tired, like I was fighting something. Doc. thought maybe it was Shingles and treated me for that, though I never got a rash.

-10+ weeks ago: Started w/same types symptoms on left hip, lower back/stomach and upper thigh area (left side only--can radiate to part of the right stomach/back). I feel  very tired and more shooting pains/deep aches/skin sensitivity in p.m. and need daily nap. Overall, I feel like I'm fighting something--systemically and w/pain. Feels like whole leg more "tired" and achy--like I went on a 50-mile bike ride on that side. Symptoms/severity vary daily. Symptoms finally seem to be improving this week, though I'm getting a number left toe, foot tingling, and it feels like my lower leg is "falling asleep" at night sometimes. (left side--new symptom).

Doc. referred me to a neurologist 3 wks ago. He ordered LUMBAR MRI (normal). Last week, EMG (normal). A few blood tests (Lyme: negative). Only test not "normal" was slightly elevated gamma immunoglobulin. W/normal EMG, doc said further testing wouldn't "yield much value" now. Said could be "post-infectious neuritis" and we should "wait and see." Offered Neurontin, but I'm sticking w/Advil for now.

I'm so frustrated because I've never had anything like this before, and I feel like the neuro thinks I'm just a hypochondriac Could this be MS? I know it's hard to pinpoint this kind of thing. Does it make sense to wait or should we ask for further testing/2nd opinion—even though symptoms are finally improving? Health ins. may not be good next year, so if anything can be done now... THANKS in advance for your advice!

PS Only other medical issue: Dx w/Menieres w/32% caloric weakness/vestibular loss on right side and hearing loss. Could MS be related to hearing loss?

[Rachelinpain]

just wanted to say i totally understand what you are going through.  i have seen about 8 doctors and have no diagnosis.  i have many symptoms that point to MS (of course the symptoms overlap with many illnesses) and have had no positive tests for MS, or any other disease at this point.  i have been in and out of the ER, seen neurologists, opthamologists, and others.  i have been diagnosed with recurrent encephalitis, migraines (which i have had for 15 years), RLS, possible autoimmune disease, sensory disturbances, anxiety, stress, and whatever else people get diagnosed with when no one wants to igure out what is wrong with you.  i am in the "wait and see" stage as well.  right now i am just treating my symptoms...i am taking neurontin, feldine and percocet.  i have tried others as well.  all i know is that soon after i had my twins 2 1/2 years ago i went from being a very active, fit medical student to a shadow of myself.  no matter what anyone tells me, i know there is something wrong.  i have given up trying to find a diagnosis at this time due to my frustration with doctors.  it is awful to hope for a worsening condition but sometimes i just wish something would get really bad that would force a doctor to diagnose me with something so at least i would know what i i am treating.  good luck and stay positive.  listen to your body and keep track of your medical records.

[minnesotamom]

Thanks so much for your response. I really appreciate hearing from someone who has first-hand experience. My primary care doc. referred me to this neurologist, and he said he defers to the neuro's opinion and that only the neuro can give me a referral "outside the care network." My neuro said that my symptoms don't "strongly point to MS," so that's why he thinks we should just "wait and see." He said that if I had another "episode" in the future, I should give him a call, but that he doesn't feel a brain MRI and/or lumbar puncture would "yield much value" at this point. I just don't know how hard to push at this point. All I know is that I don't feel normal, and I'm really frustrated. I don't want to be sick, and I just want to get on with my life. However, I also want to know what I'm dealing with. Does that make sense? Thanks again.

[doublevision1]

Your symptoms, the tingling, pain and fatigue , sound like they could be indicative of any number of conditions, including neurological diseases incl. MS.  

Did this neuro tell you that the negative EMG and lumbar MRI "ruled out" MS specifically?  I ask, because neither of these tests are used to diagnose MS.  Rather, they would rule out other conditions, ie: EMG rules out peripheral nerve disease (MS is a disease of the central nervous system); lumber MRI could rule out degenerative disease, tumours, so-called "slipped disc", etc. of the lower spine.  No information gleaned from either of these tests can confirm MS.  At least that is my understanding, hopefully others will chime in here.

If there is any suspicion of MS, then MRI of brain, c- and t-spine, evoked potentials and lumbar puncture in addition to a thorough neurological exam and detailed clinical history should be undertaken.  MS can be very difficult to diagnose given there are so many mimics.  What does your referring physician think you should do next?  Does s/he agree with the neuro's advice?  I know how stressful it is, having these disturbing symptoms.  I can understand your frustration in being told to simply wait and see.