Feels like Im losing my mind!

[mamaj]

Good morning everyone! Just wanted to give a quick update. Just checked, and some of my levels are back. Still waiting for a few.

B12 is 290 and homocysteine level is 14.6 (lab sheet says this is dangerously high??) All I know about homocysteine is that is a level they watch when dealing with blood clots?! Any input??

Appointment with PCP didnt go that great She wants me to see yet ANOTHER neuro, have a spinal tap, ANOTHER eye exam and a sleep study.

I certainly will do whatever it takes to feel better. I am definately, by no means WANTING this to be my diagnosis. Nothing else fits. Everything is "normal". Im just wondering when nothing else can be found, and all symptoms point to MS, at what point do they give the diagnosis. Im so afraid of being of these people that takes years for diagnosis. I want to feel better NOW.

[lyndacarol]

Good morning everyone! Just wanted to give a quick update. Just checked, and some of my levels are back. Still waiting for a few.

B12 is 290 and homocysteine level is 14.6 (lab sheet says this is dangerously high??) All I know about homocysteine is that is a level they watch when dealing with blood clots?! Any input??

Appointment with PCP didnt go that great She wants me to see yet ANOTHER neuro, have a spinal tap, ANOTHER eye exam and a sleep study.

I certainly will do whatever it takes to feel better. I am definately, by no means WANTING this to be my diagnosis. Nothing else fits. Everything is "normal". Im just wondering when nothing else can be found, and all symptoms point to MS, at what point do they give the diagnosis. Im so afraid of being of these people that takes years for diagnosis. I want to feel better NOW.

A low serum B12 test result (Your 290 does not reach the 550 pg/mL cutoff recommended by Pacholok and Stuart in their book, Could It Be B12? An Epidemic of Misdiagnoses.) and a high homocysteine level is the classic definition of B12 deficiency. (This is often confirmed by a low serum folic acid test result and a high methylmalonic acid level.)

I refer you to this post by NHE on June 5, 2014: http://www.thisisms.com/forum/natural-a ... ml#p225969

Vitamin B12 is used to convert homocysteine to methionine via methylation. As such, low vitamin B12 levels are associated with high homocysteine. Homocysteine is a toxic amino acid which has been widely reported to be associated with cardiovascular disease, e.g., high blood pressure, stroke, atherosclerosis, etc. The following paper discusses the association of high levels of homocysteine with lower cognitive scores and reduced cerebral white matter volume. So, if you're feeling a bit off and your MS doc tells you that you have white matter atrophy, then tell them to check your B12 and homocysteine levels. It's not always MS.


Associations between elevated homocysteine, cognitive impairment, and reduced white matter volume in healthy old adults. ttp://www.ncbi.nlm.nih.gov/pubmed/23343490

OBJECTIVES: Elevated homocysteine has emerged as a risk factor for cognitive impairment even in healthy elderly persons. Reduced brain volume and white matter hyperintensities also occur in healthy elderly as well, but the interrelationships between these have not been well studied. We report these interrelationships in non demented, relatively healthy, community-dwelling older adults from a single East Asian population.

METHODS: Two hundred twenty-eight right-handed participants age 55 years and above were evaluated. Persons with medical conditions or neurological diseases other than well-controlled diabetes mellitus and hypertension were excluded. Participants underwent quantitative magnetic resonance imaging of the brain using a standardized protocol and neuropsychological evaluation. Plasma homocysteine, folate, vitamin B(12), and markers for cardiovascular risk: blood pressure, body mass index, fasting blood glucose, and lipid profile were measured.

RESULTS: Elevated homocysteine was associated with reduced global cerebral volume, larger ventricles, reduced cerebral white matter volume, and lower cognitive performance in several domains. Elevated homocysteine was associated with reduced white matter volume (β = -20.80, t = -2.9, df = 223, p = 0.004) and lower speed of processing (β = -0.38, t = -2.1, df = 223, p = 0.03), even after controlling for age, gender, and education. However, the association between homocysteine and lower speed of processing disappeared after controlling for white matter volume. Elevated homocysteine was not associated with white matter hyperintensity volume or with hippocampal volume. Although homocysteine and folate levels were correlated, their effects on white matter volume were dissociated.

CONCLUSION: In non demented, relatively healthy adults, elevated homocysteine is associated with lower cognitive scores and reduced cerebral white matter volume. These effects can be dissociated from those related to white matter hyperintensities or reduced folate level.

I encourage you to get and read a copy of Could It Be B12? In the authors' opinion, it borders on malpractice to ignore a vitamin B12 deficiency and to allow symptoms to become irreversible. I don't understand your PCP's reluctance to pursue the B12 idea; if she feels unqualified in that area, let her refer you to THAT specialist.

The treatment for a B12 deficiency is non-toxic, has no side effects, and is inexpensive. Why not prescribe a therapeutic trial?

[mamaj]

Zinc just came back, level is 69. seems to be on the labs low end of "normal".

[jimmylegs]

eek you'd be red flagged deficient if you got that test done at my local hospital's lab!

[mamaj]

Still waiting to hear back from PCP about all of my results, but here are my numbers from the lab.

Chloride 100
C02 21
B12 290
Vit D 36 (time before this back in April was 21)
Homocysteine 14.6
methylmalonic acid 0.31
zinc 69
celiac screen 4
Ferritin 6.7
Iron 47
Iron binding gap 47

Obviously there are quite a few deficiencies there. I have been reading and working on changing my diet to bring some of these numbers up. My question is, are the deficiencies causing my symptoms? Or are the deficiencies a SYMPTOM of MS?

It seems like every couple of days, I notice something new. This morning, I woke up and the whole left side of my face was numb. As if I had some dental work done.

For those of you that went undiagnosed for a long period of time, what do/did you do to cope with your syptoms. I feel like everyone must think Im crazy, and there are no answers to be found. And to top the emotional wear and tear off, Im not getting any relief from these crazy symptoms!

[lyndacarol]

Still waiting to hear back from PCP about all of my results, but here are my numbers from the lab.

Chloride 100
C02 21
B12 290
Vit D 36 (time before this back in April was 21)
Homocysteine 14.6
methylmalonic acid 0.31
zinc 69
celiac screen 4
Ferritin 6.7
Iron 47
Iron binding gap 47

Obviously there are quite a few deficiencies there. I have been reading and working on changing my diet to bring some of these numbers up. My question is, are the deficiencies causing my symptoms? Or are the deficiencies a SYMPTOM of MS?

That is the "$64,000 Question" (as the 1950s TV show asked). You will find people espousing each position – MY feeling currently is that deficiencies are causing the symptoms, especially vitamin B12 deficiency. In my opinion, your preliminary testing for a possible B12 deficiency justifies further testing (as I said earlier, your B12 is low, your homocysteine is high; and according to my lab's Methylmalonic Acid test standard range: <= 0.40 nmol/mL, your 0.31 is also at the high-end) – if your PCP is unwilling to discuss or order a Schilling test or any further investigation, ask for a referral to a hematologist.

[mamaj]

I will ask her about the Schillings test! Likely she will refer me to a hematologist. This isn't a test Ive every heard of our Docs doing here in the office. Its weird becasue she doesnt seem concerned with any of the lab values. Her nurse actually told me that my labs came back fine. So it seems like, if I didnt work here, and have access to see the values myself, I wouldnt know that some of them are off. Is it really not that big of a deal? What happens if this kind of thing goes left untreated?

[lyndacarol]

I will ask her about the Schillings test! Likely she will refer me to a hematologist. This isn't a test Ive every heard of our Docs doing here in the office. Its weird becasue she doesnt seem concerned with any of the lab values. Her nurse actually told me that my labs came back fine. So it seems like, if I didnt work here, and have access to see the values myself, I wouldnt know that some of them are off. Is it really not that big of a deal? What happens if this kind of thing goes left untreated?

You may find information in the following video useful: "Everything You Want Your Doctor to Know about Vitamin B12"



I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

From the book, Could It Be B12?: (beginning on page 15)

Ironically, this misplaced concern over the expense of B12 testing costs the medical system far more than it saves, because B12 deficiency is remarkably simple to detect and even easier to treat. Patients treated in the early stages of the disease usually experience complete recovery, with even severe symptoms such as vision loss, agonizing leg pains, paralysis, multiple sclerosis-like symptoms, psychosis, and dementia often receding in months or even weeks. Moreover, unlike many medical problems, B12 deficiency is very inexpensive to treat. Treatment for one year involving bi-monthly injections and a series of six initial daily injections costs $36 per year when patients or family members administer the injections (which are similar to the insulin shots diabetics give themselves).… (Continuing on page 16:) There is no price one can place on the pain of individuals whose undiagnosed B12 deficiency leads to severe, irreversible physical and mental disability.

[want2bike]

Dr. Bergman gives you a program which could make a difference. He says you can recover in 30 to 60 days. Why not give it a try? When you start eating the raw fruits and vegetables your body will get the nutrients it needs.

[NHE]

Still waiting to hear back from PCP about all of my results, but here are my numbers from the lab.

Chloride 100
C02 21
B12 290
Vit D 36 (time before this back in April was 21)
Homocysteine 14.6
methylmalonic acid 0.31
zinc 69
celiac screen 4
Ferritin 6.7
Iron 47
Iron binding gap 47

I agree with LyndaCarol. MS is a diagnosis of exclusion. A B12 deficiency is a condition to be excluded before a diagnosis of MS can be made. The standard range of homocysteine is 4-12 µmol/L and B12 is around 247-925 pg/mL. Your B12 is near the bottom of the range and you would likely be considered deficient. Moreover, your homocysteine level is over the top of the range. Homocysteine is a cardio toxic amino acid that builds up when B12 is low. It is removed by B12 via conversion to methionine by methylation. Your high homocysteine suggests that B12 is unacceptably low. Low B12 can cause symptoms that mimic MS.

In addition, your ferritin is low. The standard range for serum ferritin for an adult female is 15-150 ng/mL. Serum iron is also near the low end. The standard range for serum iron for an adult female is 35-155 µg/dL.

Vitamin D3 is also a little low. Most PwMS will want their number up around 45 ng/mL. See... http://www.thisisms.com/forum/post226483.html#p226483

[mamaj]

Just wanted to put this out there... I had an appointment last week with opthamologist. He told me that he did see some scarring, and some new "sheathing" of the optic nerve in my left eye. I do have a little blurred vison, but nothing terrible. He wants me to see an neuroopthamolgist... there is only one in our city, and he pulled some strings to get me an appointment this week. He told me that this is/can be a "classic" sign of MS. Im thinking, this can't be good? He also suggested that I taper off of the cymbalta (that Ive been taking for nerve pain) as this can worsen the effects of the neuritis. Any thought/insight before I go to yet another specialist??