Trying to get answers

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Trying to get answers

Postby NextEngland » Fri Dec 21, 2012 3:00 pm

:confused: :confused: :confused: :confused: :confused: :confused:

That about sums it up!

My story is probably like many of yours. Fatigue, chronic pain, more fatigue, weird sensations, deep muscle pain in legs, numbness in feet, tightness and numbness/pain in left arm, moodiness, panic attacks, pain, debilitating fatigue, Epstein Barr titer off the charts, dx'd with fibromyalgia / CFS, referred to Rheumatologist where I was run through the ringer and dx'd with seronegative RA and spinal stenosis in thoracic region and a variety of other bone and joint pains and names. 6 months ago, all I THOUGHT I had was a thyroid issue that has been well under control since 2004.

In November, I then took it upon myself to go see a neurologist who agreed to brain and cspine MRI. Neck is clear minus a few tiny disc bulges but brain has at least 4 small grayish white lesions. I assumed next step would be thoracic MRI and spinal tap but neurologist stopped there. I was hospitalized the day of my MRI with uncontrollable high blood pressure and given a stress test and CT scan of lungs. All was clear and I was put on BP meds and discharged. I asked neuro why he wouldn't do thoracic MRI and he said he saw no reason to. He told me to come back for a follow up in 6 months if I was really that concerned.

Is it time for a second opinion???? Do I push for thoracic MRI since I have the spinal stenosis and back pain/leg issues? Oh... and I forgot... memory and comprehension have all but left. I had to request a reasonable accommodation at work just to make it through the days. That was like pulling teeth, but we are at least making progress.

I don't want to be stuck on a diagnosis if its not true, but I want someone to actually be THOROUGH! I know how hard it is and how long it takes to dx MS. If I do have it, I'd like to catch it early so I can hopefully maintain my current lifestyle with medication and lifestyle changes.

I live in DFW (Texas). Thoughts, recommendations?

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Re: Trying to get answers

Postby jimmylegs » Fri Dec 21, 2012 3:39 pm

here's some info you may find useful:


plenty of it applies to fibro as well as ms.

i have used this approach to beat ebv too.
lab tested results. from nov 2: "good news is the mono is no longer showing up"
this was a multi-yr seriously chronic case too.
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: Trying to get answers

Postby MarkLavelle » Fri Dec 21, 2012 7:11 pm

NextEngland wrote:Is it time for a second opinion???? Do I push for thoracic MRI since I have the spinal stenosis and back pain/leg issues? Oh... and I forgot... memory and comprehension have all but left.

IMHO, it's almost *always* time for a second opinion. But that doesn't mean the neuro is shirking...

You haven't mentioned any symptoms that would be most likely to be caused by thoracic spine lesions, so it's not at all surprising that the neuro doesn't think an MRI is in order. And a spinal tap is not definitive one way or the other.

It kind of sucks, but in a case like yours (previous dx and no "must be MS" indicators) most neuros will take the wait and see approach...

RRMS dx 3/3/11; Copaxone since 12/1/11
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