Is there a true-blue Doctor in the US???

[Malinut65]

For 4 long, long, years, I have been suffering all of the symptoms of Multiple Sclerosis; (vertigo, visual disturbances, double vision, blurred vision, loss of balance, clumsiness, slurred speech, incontinence, both urinary and fecal, severe fatigue, manic depression, spasm, burning, weakness o flimbs, muscle spasticity, numbness of limbs, and unsteady gait)..Have had MRI's of both the brain and spinal cord; blood tests, 2 spinal taps, EVP; EMG; SFEMG; Opthomolgy visit (which suspected optic neuritis); Tibial Nerve Conduction test; Visual tests.....first of all, the first MRI I had was in 2005 and it showed an abnormality that was dismissed as nothing but migraine syndrome. Meds were prescribed (Maxalt, Topomax)...2006/07; the physical symptoms were getting worse, blood work was the next step...EBV was found. Symptoms got more noticeable....2008, enlarged supraclavicular lymphnode extraction (benign)...continued suffering with every symptom! 2009, 2 more MRI's blood work (striational antibodies showed positive, maybe Myasthenia Gravis???) CT of Thymus gland (negative); more blood work was (normal) outpatient for spinal myelogram (normal); Pending follow up with an Myasthenia Gravis Dr. in Massachusetts next month!! My current Neurologist ordered all of these tests since March of '09; he is STILL not convinced with a diagnosis of MS. My latest brain MRI report states "a significant abnormality within the brainstem at the centre of the pons was located..." What the HELL?" My "follow-up" appointment with him is in freaking December! What am I supposed to do? Every day I am suffering so badly...I am seeking help from a Behavioral Therapist...If I don't have MS, than maybe a hidden tumor?? Myasthenia Gravis?? Is there a REAL, HONEST TO GOODNESS DOCTOR IN THE COUNTRY THAT CAN HELP ME GET DIAGNOSED????

[wadeheather]

Count me in....I've been two three neuros and one simply told me to "suck it up" (yep, still bitter). Currently being treated for "silent" migraine, which I think is a crock of c r a p. If you find your true blue, please send him or her here to the forum to help the rest of us.

[MsWobbles]

Malinut,

I notice you are in the "wrong" age group for MS (according to most neuros I have encountered in this country).  To answer the question you asked, it may actually be necessary for you and the rest of us older patients to actually get diagnosed OUTSIDE the US.  I say this because there seems to be a real suppression of MS diagnosing of older patients among many neuros in this country today.

You said you had spinal MRIs - but did they show any lesions?  If they did - what was made of them????

Also, did you have brain mass loss visible on your brain MRI?

I have the same symptoms as you and feel like I'm dying - yet can't get any neuro's honest attention.  I'm considering going outside this country for an answer to a neuro who doesn't have to answer to the US govt.

WAF  

[Tahiri_Veila]

I am in your same boat.  It is not a fun one to be in.  I have gone through many doctors and still no answer.  But let me tell you there are some good ones out there.

My PCP has been a lifesaver, while he cannot make a for sure diagnosis he is helping all he can in pushing for the answers by tests and sending me to the right doctors.  I really will have him to thank when we find out what this is.  

I hope that you can find a doctor like that.  But until then feel free to come to this us here and vent.  We will listen.
Tahiri

[PastorDan]

UF2, sad commentary indeed, but oh, so true.

[Ufrustrated2]

of course not, that is why someone started this forum and we drop in here to seek understanding, knowledge and coping skills regarding this.

you don't see any neuro's offering knowledge exchange here do you?

[PastorDan]

Your symptoms sound quite a bit like mine.  Let me know if you find something I haven't already. :(

I would get on the horn immediately to the radiologist who wrote the MRI report.  What kind of abnormality?  How signifcant, and significant how?

[HVAC]

I feel your frustration. Is this Dr. an MS Specialist? It took me 4 Neurologist to get my diagnosis. The last was an MS Specialist.

Alex