New here, not yet diagnosed

[NHE]

Hi Cherry,
Thanks for sharing your test results. It makes sense to consider B12 deficiency in your case as B12 deficiency can mimic MS in nearly every way and the only way to distinguish the two is test B12 and it's related biomarkers.

As others have noted, a B12 value of 181 pmol/L converts to 245 pg/mL. The standard range for B12 in the US is around 200-850 pg/mL (148-627 pmol/L). A value of 181 pmol/L puts you at the low end of the "normal" range. However, the authors of the book "Could It Be B12?" state that values in this lower end of the range represent a grey zone of B12 status and may actually be deficient and that it's best to be between 500-1000 pg/mL (369-738 pmol/L). Moreover, for someone experiencing neurological symptoms they state that this represents a definite deficiency.

LyndaCarol has mentioned some additional tests, i.e., red blood cell (RBC) folate, homocysteine and methymalonic acid (MMA). These additional tests are necessary to fully evaluate how your body is processing B12. The RBC folate test is preferred over the serum folate test as it's less susceptible to changes due to variation in diet thereby giving a better picture of long term folate status. Homocysteine and MMA are two biomarkers that can be elevated if B12 is low. The standard range for homocysteine is 4-12 µmol/L. It can be high if B12, folate or vitamin B6 is low. Moreover, one medical group in my area uses 9 µmol/L as an upper limit due to homocysteine's well documented cardiotoxicity. High levels of homocysteine damage the endothelium which is the lining of all of our blood vessels. High levels are a risk factor for high blood pressure, stroke and heart attack and are also associated with dementia. I should also mention that low levels of folate can drive down B12 over time as methylfolate is used to recycle inactive B12 back to the active methylcobalamin form.

Please see the following discussion topic for more information and references on B12.
http://www.thisisms.com/forum/natural-a ... 24857.html

Lastly, be aware that CT scans use a very high dose of x-rays. For example, a single CT scan of the chest uses the same radiation as about 270 chest x-rays. That's several lifetime's worth of radiation exposure in a single scan. They were probably checking for the presence of a stroke or some other anomaly. However, an MRI is a standard diagnostic tool for MS. There's no ionizing radiation danger, but there are some precautions with the gadolinium contrast agents. It's best to drink lots of water following an MRI with gadolinium to help the kidneys clear out the gadolinium.

[NHE]

CRP was definitely 24. I was told I must be fighting an infection or something, the dr used this to justify CFS/PVFS.

If Lyme is endemic to your area, have they checked for Lyme Disease and related infections?

[Cherry]

Update from the new dr, finally someone is listening!
She's ordered 6 b12 shots over 6 weeks with follow up testing for a number of vitamin levels

[jimmylegs]

great news!

hope some mineral tests make it into the mix.

i ignored them at first and really regretted it later!

[NHE]

Update from the new dr, finally someone is listening!
She's ordered 6 b12 shots over 6 weeks with follow up testing for a number of vitamin levels

You might want to ask for the hydroxocabalamin form if your doctor is prescribing the cyanocobalamin form. According to the authors of the book "Could It Be B12?" hydroxocobalamin is better utilized by the body and retained longer making it more effective.

By the way, have you had any of the additional testing done, e.g., RBC folate, homocysteine and methylmalonic acid?

[Cherry]

In a couple of weeks she will order additional tests, I'm just glad she listened to me and said she believed me

[Cherry]

Well looks like my new dr is a bust, she's not interested in testing anything new, and just wants to put me on weekly b12 injections - until the new year. Despite having 4 x 1000mcg injections, I've noticed no difference.
I'm not really handling this, and I really don't know how long I can put up with it. I've had enough. I'm sick of being sick

[NHE]

Well looks like my new dr is a bust, she's not interested in testing anything new, and just wants to put me on weekly b12 injections - until the new year. Despite having 4 x 1000mcg injections, I've noticed no difference.
I'm not really handling this, and I really don't know how long I can put up with it. I've had enough. I'm sick of being sick

What form of B12 is in the injections? If it's cyanocobalamin, you may respond better by using either hydroxocobalamin or methylcobalamin (the hydroxo form is very common though the methyl form is available from compounding pharmacies). The authors of the book "Could It Be B12?" state that the hydroxocobalamin form is better utilized by the body and retained longer as well when compared to the cyanocobalamin form.

[Cherry]

I did check with the dr, it is hydroxocobalamin

[NHE]

I did check with the dr, it is hydroxocobalamin

Hydroxocobalamin is fairly nontoxic. The authors of "Could It Be B12?" state that it's used in 5-10 gram doses via IV to treat cyanide poisoning. This is 5,000 to 10,000 times the dose in a 1000 µg injection. They also quote a different dosing regimen, i.e., daily injections of 1000 µg for the first 5-7 days followed by one month of weekly injections of 1000 µg followed by maintenance therapy of monthly injections of 1000 µg. They state though that this protocol is out of date and that it may be better to maintain a more steady state of B12 in the body by using weekly injections for maintenance therapy. Myself, I've been taking 2000 µg sublingually every day which is a mix of 1000 µg methylcobalamin + 1000 µg adenosylcobalamin. When I was low on B12, I could feel a pick-up from the B12 within minutes.

[Cherry]

We'll I'm back in hospital, again, this will be 8 times this year that I've been admitted. It's put down as Asthma, but I'm not displaying any asthma or allergy symptoms, nor infection. I just can't move air, both in my lungs (particularly lower lungs - it's like a tight belt is wrapped around me at times) and my throat (drs are looking into vocal cord dysfunction, though have no evidence of it, but still want to inject Botox, which I'm against). The tightness in my throat is like a stricture that causes an audible wheeze.

Both of these symptoms bottom out my O2 sats to around 85 even on 10l of oxygen. Asthma medicines make no difference. It's been getting progressively worse, along with my other symptoms these last couple of years, but the drs treat me as though it's all in my head. In ED I even heard one nurse telling others to put nasal specs on me, but not turn on the oxygen, the placebo effect would be enough to get rid of me.

Needless to say the dr was unimpressed when he did his admission and saw how bad my sats were and asked why I wasn't on oxygen...

I'm also finding that my pain and weakness is often worse during these flare ups

[lyndacarol]

We'll I'm back in hospital, again, this will be 8 times this year that I've been admitted. It's put down as Asthma, but I'm not displaying any asthma or allergy symptoms, nor infection. I just can't move air, both in my lungs (particularly lower lungs - it's like a tight belt is wrapped around me at times) and my throat (drs are looking into vocal cord dysfunction, though have no evidence of it, but still want to inject Botox, which I'm against). The tightness in my throat is like a stricture that causes an audible wheeze.

Both of these symptoms bottom out my O2 sats to around 85 even on 10l of oxygen. Asthma medicines make no difference. It's been getting progressively worse, along with my other symptoms these last couple of years, but the drs treat me as though it's all in my head. In ED I even heard one nurse telling others to put nasal specs on me, but not turn on the oxygen, the placebo effect would be enough to get rid of me.

Needless to say the dr was unimpressed when he did his admission and saw how bad my sats were and asked why I wasn't on oxygen...

I am so sorry to hear that you are back in the hospital, Sarah (Cherry). Maybe you will get a better response from doctors by being IN the hospital. Blood tests should be easily available and quick.

In September, you wrote that there would soon be testing for "a number of vitamin levels." Jimmylegs encouraged mineral tests as well. I hope levels have been established for iron (important for carrying oxygen), magnesium, and zinc, at least. In fact, recently I have been reading about the importance of manganese (Mn) – I don't know if this can be tested in your hospital, but it wouldn't hurt to ask.

Vitamin B12 is needed every day by every cell in the body – especially in the formation of red blood cells, which carry OXYGEN (Could this account for your low 02 levels?). B12 is a water-soluble vitamin; any amount that your body does not need is flushed out in urine – with properly working kidneys, B12 is generally non-toxic. With your low level of B12 – measured only by "serum B12" test (181 pmol/L, which is 245 pg/mL), you may simply need more to overcome the deficiency. As NHE stated, very high doses of B12 via IV are used to treat cyanide poisoning – I can't understand the reason a doctor wouldn't try daily B12 injections (or even IV infusions) while you're in the hospital. (By the way, it is my understanding that very often asthma treatment involves corticosteroids, a.k.a. "steroids" – if this is the case with your asthma treatment, be aware that corticosteroids can lower B12 levels.)

There are many inherent problems with the "serum B12" test, your recent B12 injections may skew the results of that test even more. The other tests for serum homocysteine, methylmalonic acid, and RBC folate are more important than ever now.

[jimmylegs]

serum magnesium. in my xp, that was what led to the same list of symptoms as yours. your level is probably low normal. if so, get it to mid-high normal with an oral magnesium glycinate supplement and magnesium rich diet. particularly important if you are on any meds that interfere w magnesium absorption/utilization/retention. if repletion is going to work you should see improvements in symptoms within 2 days. get them to take your level and then if you can/will, post here