What should my next step be?

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

What should my next step be?

Postby cgalyean » Thu Jul 13, 2017 2:54 pm

I have been having odd symptom's for over a year now I am not sure what to think of all of the doctor's I have visited. I have seen the lung doctor thy for tiredness and fatigue they set me up on a CP machine even though I passed the test except for one so I use it nightly. I have been to the cardiology for my numbness in my arms passed their test. I went to the neurologist and had an MRI with and without contrast and it came back fine. I feel like I am going crazy!

My symptoms:
fatigue: most days I am extremely fatigue to where I am napping during the day just to get through the day
randomly I experience numbness in my left and right arms
My legs hurt every day some days are worse than than others. When I say hurt it ranges from stiffness to weakness to can not touch them at all and while laying down they are numb and feel lifeless.
Headache
Vision is randomly blurry
Stiffness in my neck as well as it pops and a heat sensation flows through the top of my brain
Both Arms are often in pain after doing just light work such as writing, using a can opener, etc....

My question is has anyone experienced these symptoms and passed all the test?
Any suggestions are welcomed I am at a loss to what my next step should be

Help
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Re: What should my next step be?

Postby Zyklon » Thu Jul 13, 2017 3:38 pm

Did you have only brain MRI? Neck and spine? Do you know your D3, B12, iron, magnesium levels?
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: What should my next step be?

Postby cgalyean » Thu Jul 13, 2017 4:03 pm

I do not know those levels. I do know that I have no vitamin D the others are easy enough to ask for. This will be my 2nd MRI
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Re: What should my next step be?

Postby Zyklon » Thu Jul 13, 2017 4:44 pm

Fatigue is an iron deficiency symptom
Muscle problems is a magnesium deficiency symptom
Numbness is a B12 deficiency symptom

Please get tested for vitamin D3, B12, magnesium, iron. All blood tests. If you rule out mineral/vitamin deficiencies, go for a neck and spine MRI.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: What should my next step be?

Postby jimmylegs » Thu Jul 13, 2017 5:29 pm

yes yes yes.
keeping in mind that for d3 test you're talking serum 25(OH)vitamin d3. (although it's much better known that it was a decade ago so perhaps at this stage d3 form recommendations not required).
serum cobalamin for basic b12 status.
serum magnesium.
serum ferritin for basic iron status.
and not forgetting serum zinc of course (can contribute to vision issues) :)

lastly, noting that for many essential nutrients, tests are frequently misinterpreted - deficiency occurs within normal (think stats/bell curve normal, as distinct from optimal) ranges. we can easily rule out 'deficiency' as currently defined. assessing for non-optimalcy (yes i am making up words now lol) is often more telling and can identify clear nutritional action items.
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: What should my next step be?

Postby ElliotB » Thu Jul 13, 2017 9:48 pm

"I am at a loss to what my next step should be"

Perhaps you should ask you doctor(s).
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Re: What should my next step be?

Postby jimmylegs » Fri Jul 14, 2017 4:26 am

for example, for a referral to a dietitian with a preventive orientation, in parallel with any disease diagnosis and management oriented types
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: What should my next step be?

Postby Zyklon » Fri Jul 14, 2017 7:36 am

One year of symptoms, lots of doctors, feeling lost and not even get tested for B12? Either you ignore your doctors or you go to really bad doctors.

Please listen jimmylegs for tests.
Pain! You made me a, you made me a believer, believer
Pain! You break me down, you build me up, believer, believer
Pain! Oh let the bullets fly, oh let them rain
My life, my love, my drive, it came from... Pain!
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Re: What should my next step be?

Postby NHE » Sat Jul 15, 2017 12:03 am

jimmylegs wrote:yes yes yes.
keeping in mind that for d3 test you're talking serum 25(OH)vitamin d3. (although it's much better known that it was a decade ago so perhaps at this stage d3 form recommendations not required).
serum cobalamin for basic b12 status.

A complete B12 analysis includes red blood cell folate, homocysteine and methylmalonic acid (MMA) in addition to B12. Measuring B12 alone is not that useful especially if you test in the lower range of the scale, usually 200-800 pg/mL, but are still labeled as "normal" by your doctor.

Background: Homocysteine and MMA are two biomarkers that indicate how well your body is using the B12 you do have. Homocysteine is a cardiotoxic amino acid that can build up when either B12, folate or B6 is low. MMA can also be elevated in cases of low B12 and is thought to be more specific to B12 than homocysteine. However, it is possible to be B12 deficient even if MMA is normal. For example, use of antibiotics at the time of your blood test can lead to a false negative MMA result.

The bottom line is, though, if you have neurological symptoms, then you'll want B12 to be 550-1000 pg/mL.

In addition, some people do better with shots using the hydroxocobalamin form of B12 than they do with sublingual tablets.
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