Hello and want suggestions

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Hello and want suggestions

Postby Pepco » Fri Jul 21, 2017 11:24 am

Hi! I don't have a MS diagnosis. I have a lot of numbness. My face was first, but now my face, stomach, arms, hands, legs, and feet are all numb. My body has now been numb for 10 days. I have been to the neurologist. I had a CT and MRI of my head, which all came beck ok. Blood work was ok as well. Next week I'm getting MRI of my spine. The doctor seems baffled. She asked if I had any family members with Ms, and when I said no, she basically ruled that out. All her tests (strength) in her office ch checked out fine.

My question is: could MS be present when all tests are clear? If the MRI of spine comes back ok, what should I do next? The neuro doctor says it may be a situation that I have to wait it out. I am a teacher and go back to work in about 4 weeks. I don't know if I could make it through a day of work because of exhaustion. Does anyone have any suggestions?

Thanks!
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Re: Hello and want suggestions

Postby jimmylegs » Fri Jul 21, 2017 11:50 am

hi pepco :)
here are my 2c. 'normal' bloodwork results can be deceptive to the point of negligence.
effort and energy should focus on pursuit of health and not just the quest for diagnosis.
ask for a referral to a preventative health maintenance pro, vs to a diagnostician / disease maintenance pro. a dietitian could be a useful first step.
in prep for any future visit to a dietitian, track any and all intake of food fluids meds and supplements for several days. with that info they'll be able to provide specific recommendations.
in the meantime if you are comfortable sharing some characteristics of your diet and lifestyle we will probably find some actionable clues, ways to ensure you are setting yourself apart from the nutritional profile of a typical ms patient.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
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: Hello and want suggestions

Postby NHE » Fri Jul 21, 2017 4:49 pm

jimmylegs wrote:here are my 2c. 'normal' bloodwork results can be deceptive to the point of negligence.


Agreed! Vitamin B12 deficiency is a key differential diagnosis for MS, yet the standard laboratory range used to classify someone as "normal" is much too broad and is better described as criminally negligent in some cases. You really need to know your actual test results. For anyone experiencing neurological symptoms, you'll want B12 to be between 550-1000 pg/mL.
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Re: Hello and want suggestions

Postby jimmylegs » Sat Jul 22, 2017 3:01 am

and of course if you do identify a low b12 level, it's also negligent to stop there.

personally i considered b12 to be my own smoking gun but if it had been b12 and b12 alone, my desperate attempts to boost my level prior to dx should have made a difference. they did not.

the only regimen that helped after b12 stopped working and after dx included a wide variety of supplements. chronic disease is multifactorial and occurs within a very complex system. when people hone in on single magic pills it's just as bad as being comforted by normal bloodwork results.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
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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jimmylegs
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Posts: 10770
Joined: Sat Mar 11, 2006 3:00 pm


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