Misdiagnosis possibility???

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ga1lrs52
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Misdiagnosis possibility???

Post by ga1lrs52 »

Hi, I'm new here and I have no idea what I have. I had an EMG and nerve conductive(?) test and was told I have PN. That was six months ago and since then I am experiencing slight numbness in my forehead and on my scalp. I told my neurologist and she told me that wasn't caused by PN. She had me go and get labs done on about 12 different things such as cryoglobulins, Sed Rate, CRP, Hemoglobin, and some heavy metal labs. All of them came back negative. I also now have muscle twitches in my lower legs on both legs and on my upper leg on my right leg. I'm not sure what my next step should be. I have been looking at PN and MS sites and My question is...can you have a misdiagnosis of PN and actually have MS? If so, how do you go about convincing your neurologist that you're not happy with the mystery in all of this? Please help me with any information you think of. Thanks for letting me vent. :-)
THX1138
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Re: Misdiagnosis possibility???

Post by THX1138 »

I also now have muscle twitches in my lower legs on both legs and on my upper leg on my right leg.
I have these also and magnesium is what has consistently helped a lot. Muscle twitches, cramping tightness, etc. are all classic signs of having insufficient magnesium.
Various types of Mg vary widely in their effectiveness.
Conventional doctors have very little training regarding nutrients. They are into drugs and not nutrients.
Their is much info on Mg here at TiMS.
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jimmylegs
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Re: Misdiagnosis possibility???

Post by jimmylegs »

hi g and welcome :)

did the doc test serum ferritin, serum magnesium, serum zinc, any other nutrients at all? if not, you can assess your own diet to see if you are meeting basic daily requirements for essential nutrients. often, people aren't.

here are some potentially encouraging forum discussions for your review:

preliminary diet analysis work
http://www.thisisms.com/forum/undiagnos ... 25652.html

successful dietary symptom management
http://www.thisisms.com/forum/general-d ... ml#p230894

successful supplemental symptom management
http://www.thisisms.com/forum/general-d ... ml#p189325
active members shape site content. if there is a problem, speak up!
use the report button to flag problematic post content to volunteer moderators' attention.
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lyndacarol
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Re: Misdiagnosis possibility???

Post by lyndacarol »

ga1lrs52 wrote:Hi, I'm new here and I have no idea what I have. I had an EMG and nerve conductive(?) test and was told I have PN. That was six months ago and since then I am experiencing slight numbness in my forehead and on my scalp. I told my neurologist and she told me that wasn't caused by PN. She had me go and get labs done on about 12 different things such as cryoglobulins, Sed Rate, CRP, Hemoglobin, and some heavy metal labs. All of them came back negative. I also now have muscle twitches in my lower legs on both legs and on my upper leg on my right leg. I'm not sure what my next step should be. I have been looking at PN and MS sites and My question is...can you have a misdiagnosis of PN and actually have MS? If so, how do you go about convincing your neurologist that you're not happy with the mystery in all of this? Please help me with any information you think of. Thanks for letting me vent. :-)
Hi and welcome to ThisIsMS, ga1lrs52.

PN? You were told you have Peripheral Neuropathy?

Numbness/tingling in the legs and arms is the textbook definition of "peripheral neuropathy." This is a common symptom in many conditions. In investigating the cause of peripheral neuropathy, your neurologist ordered the "12 different things" to be tested which, no doubt, included the following (?), as the University of Chicago suggests:

http://peripheralneuropathycenter.uchic ... #bloodtest\
Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
MS is a diagnosis of exclusion, made after other more likely possibilities have been ruled out. Please note that the first blood test the U of Chicago suggests is for vitamin B12.

Please request your own copy of any test results (memory often fails us and a simple "normal" from the doctor's office is not adequate – you need to have the actual numbers). By the way, the cutoff for a possible B12 deficiency is set too low in US labs (some sources say anything below 550 pg/mL is suboptimal); in fact, the serum B12 test alone is inadequate at detecting a deficiency. The HoloTranscobalamin (HoloTc) test is considered by many to be much more accurate and useful in detecting a deficiency in both the blood and the tissue.

There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.
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