Neurological symptoms plus more

[caledonia]

What's the test for checking cellular B12? I'd like to explore the B vitamins further with my doctor. You mentioned about seeing a naturopath or holistic doc. I'm now seeing a holistic doctor which is why I was able to get all the blood tests so far. Seeing a regular GP was a waste of time and money, the GP appointments were 10 minutes long and they don't really think outside the square in a short 10 minute appointment.

I had my SIBO test today, it was negative so that's another issue to cross off the list.

I won't see my holistic doctor until September so I've got some time up my sleeve to think about what to ask of him next. He mentioned a stool test to check for parasites so that'll be another test to do. All this is sending me broke! A few good things that I'm pleased about so far though, getting off the Nexium and Gluten and Dairy, it will be interesting to see if I slowly improve.

Cheers !!

It's great that you're seeing a holistic doc.

Cellular B12 tests - methylmalonic acid, holo transcobalamin II, looking at cobalt on a Doctors Data Urine Essential Minerals test. (The third one is the one I had that showed below detection limit.)

You can also infer deficiency from the NutrEval test. Mine is low on there too.

Forgot to mention, PPIs can have a rebound effect once you get off them. I'm not sure if that's due to the parietal cell thing or something else. But it should straighten itself out eventually.

=-==-=-
I think I mentioned mercury somewhere in there. The symptoms of mercury toxicity are extremely similar to ME and CFS, B12 deficiency, etc. Lead, arsenic, aluminum etc. are also similar.

Have you ever had any mercury amalgam fillings? Did your mother have mercury fillings when she was pregnant with you (2/3 of the mother's body burden is passed to the infant). Do you eat a lot of fish such as tuna or ever played with mercury? How many vaccines have you had?

All of those would be risk factors. There may be more.

Have you done testing for heavy metal toxicity? If so, which test?

 

[SickFromAus]

Sorry I haven't replied to some questions and suggestions but I've not been well.

Anyway a quick update. I'm so disappointed that I've had to go back onto nexium, very disappointed with myself. I tried for about 6 weeks but the burning and the hacking cough that resulted got too much.

And even more worrying for me now, I've developed some weakness in my left arm or hand, I think it's more the hand. I've noticed some weakness in the left index finger too. I went to see my GP then got seen by a neurologist at hospital after my GP told me to go there, the neuro agreed that there's some weakness compared to the right index finger but all the other strength tests and reflex tests he did were ok according to him. And the twitching goes on relentlessly.

So the neuro proceeded to give me a lecture about seeing a counsellor to get stress under control then after that, and only after that, should I go back and see my regular neurologist (who months ago also recommended counselling). I've been seeing a counsellor for about a year for things but not the one that he wanted me to see, it's a counsellor I've been seeing even before I first visited my now regular neuro.

I'm finding that typing has become harder when I have to spread fingers across the keys if that makes sense. I've pretty much gone back to having to two finger type.

So I feel so demoralized and berated and disappointed.

It's great that you're seeing a holistic doc.

Cellular B12 tests - methylmalonic acid, holo transcobalamin II, looking at cobalt on a Doctors Data Urine Essential Minerals test. (The third one is the one I had that showed below detection limit.)
=-==-=-
I think I mentioned mercury somewhere in there. The symptoms of mercury toxicity are extremely similar to ME and CFS, B12 deficiency, etc. Lead, arsenic, aluminum etc. are also similar.

Have you ever had any mercury amalgam fillings? Did your mother have mercury fillings when she was pregnant with you (2/3 of the mother's body burden is passed to the infant). Do you eat a lot of fish such as tuna or ever played with mercury? How many vaccines have you had?

Have you done testing for heavy metal toxicity? If so, which test?

The only B12 tests I've had are serum B12 which is 588 and Methylmalonate which was <0.10

I had heavy metal tests last year but I think only for the two mentioned below.
Mercury 15 nmol/L (0 - 50)
Lead 0.1 umol/L (< 0.48) also reported as 2.2 ug/dl (<10.0)

I also had a hair mineral analysis last year but I don't know if there's much meaning in that type of test. If it's relevant I can post results of that too which did check for about 10 heavy metals.

Arghhhh I'm having so much trouble with coordination while trying to type. My GP was being very cautious the other day when my arm weakness started so because I also reported heaviness in my right leg he sent me for a CT scan to make sure I hadn't had a stroke, scan was clear. This new coordination / weakness thing has me super worried that I've got mnd.

Edit: Oops forgot to mention about the amalgam fillings. Right now I've got 4 of those, but have had more in the past which were replaced by either crowns or the white fillings. I don't know about my mother's dental history. Vaccines, not sure really, the usual childhood vaccines, Hep A/B, some travel vaccines about 12 years ago so I could go overseas but not exactly sure what those were now. Yes I eat fish, about twice per week, usually farmed salmon.

 

[Sea]

@SickFromAus have you had an ANA (anti-nuclear antibodies) blood test? This is a fairly standard blood test usually done when there is any suspicion that an illness could be autoimmune (such as Sjogren's). It's not always positive in autoimmune illness but it does often give an indication that something autoimmune is going on.

Also, doctors usually order a complete blood count when they're looking for an illness. Part of this test is the MCV (mean cell volume). Do you have any results for this? Even though doctors order this test they tend to ignore it when it's out of range. A high result can indicate a B12 deficiency.

 

[SickFromAus]

@SickFromAus have you had an ANA (anti-nuclear antibodies) blood test?

Also, doctors usually order a complete blood count when they're looking for an illness. Part of this test is the MCV (mean cell volume).

Hi Sea

Sept 2014 ANA detected - 1:80 homogeneous. Then in Dec 2014 ANA negative.

MCV in Sep 2014 was 88 and in Jul 2015 was 90 (80-100). In Aug 2008 MCV was 83.

 

[caledonia]

Anyway a quick update. I'm so disappointed that I've had to go back onto nexium, very disappointed with myself. I tried for about 6 weeks but the burning and the hacking cough that resulted got too much.

Don't worry too much about this. You can take sublingual versions of the vitamins it depletes to counteract it. Google "Nexium depletes" to find out what those are.

So I feel so demoralized and berated and disappointed.

It's hard to have disbelieving doctors - unfortunately it's like an epidemic around here :-(

I had heavy metal tests last year but I think only for the two mentioned below.
Mercury 15 nmol/L (0 - 50)
Lead 0.1 umol/L (< 0.48) also reported as 2.2 ug/dl (<10.0)

I also had a hair mineral analysis last year but I don't know if there's much meaning in that type of test. If it's relevant I can post results of that too which did check for about 10 heavy metals.

Edit: Oops forgot to mention about the amalgam fillings. Right now I've got 4 of those, but have had more in the past which were replaced by either crowns or the white fillings. I don't know about my mother's dental history. Vaccines, not sure really, the usual childhood vaccines, Hep A/B, some travel vaccines about 12 years ago so I could go overseas but not exactly sure what those were now. Yes I eat fish, about twice per week, usually farmed salmon.

Okay! Now we're getting somewhere. Given your symptoms and past and present history of mercury amalgams, I would be shocked if you didn't have mercury toxicity.

Depending on what your heavy metal tests were, it's common to have a low result when you actually have toxicity. For example, a serum test will only tell you about recent exposures showing up in the blood, not past exposures which have been stored in the body.

A hair mineral test can also show low metals. The mineral side is the main thing to look at. You would look for disordered mineral transport interpreted with Cutler's counting rules.

Go ahead and post your test, and I'll take a stab at interpreting it.

ps. mercury toxicity could be causing your reflux issues.

 

[SickFromAus]

I haven't been able to find my hair test results, but I did recently have a saliva cortisol test with results below....

Morning 7.8 (range 6.0 - 42.0 nmol/L)
Midday 5.2 (2.0 - 11.0)
Afternoon 3.0 (2.0 - 11.0)
Evening 1.0 (1.0 - 8.0)
Cortisol Daily, Total 17.0 (11.0 - 76.0)
DHEAS Profile Morning 9.5 (5.0 - 30.0)
DHEAS/Cortisol AM Ratio 1.22 (0.2 - 0.6)

So I wonder how much of the above results could be causing my symptoms and especially twitching. Also Serum Cortisol back in July was high (blood taken @ 9:30 AM) 593 (170-550).

My sleeping isn't good, twitching is still quite bad, muscle loss seems to still be occurring on my hands arms & thighs but so far my calf muscles have been spared.

Any thoughts on my saliva cortisol test results would be most appreciated. The lab has said that my results are suggestive of adrenal insufficiency / adrenal hypofunction.

Over the past couple of years my stress has been high because of the twitching and I'm sure that my cortisol would have been much higher than the high blood result I got back in July, I'm hoping that this is what has caused muscle atrophy and loss off subcutaneous fat. Anything but a muscle disease!!!