[Geraldine]

Hi, I've just joined this forum, I just got dx of pn on Monday, I've been having toe pain since July (just after my wisdom tooth extraction - face and toes started it off). I don't know if it has to do with nutrition, which was already poor but I couldn't eat anything for 4 weeks but sugary soft stuff. My toe started hurting exactly one week after finishing the antibiotic.

But my pn might be due to my connective tissue disorder, Mixed Connective Tissue Disease. Although my rheum doesn't seem to think that's bothering me all that much, since my numbers have been down. But during my extraction week for some reason I decided to go off my MCTD meds (plaquenil). Did any of that cause this to progress so rapidly or was I already headed in this direction anyway?

I am extremely scared right now, I have so many problems and now this too. The last couple months I've been to a doctor almost every day, and my insurance is NOT real insurance. I've made an appt with a neurologist but won't get in until Dec. 27. In the meantime, I wanted to start on supplements. My question is, should I start on them or should I wait until my appt.? I know they will run tests, and I don't want to throw any tests off, but that's over a month away and I don't want to waste that time doing nothing about it.

Also, maybe 6 months ago my rheum ran some tests including a B12 test. I was high in B12, she said. Does this mean I don't need to supplement with B12 - or it will not help me at all - or could test have been thrown off by my supplementing with the sublingual form a couple of days before the test? Considering I have autoimmune AND fibromyalgia AND neuropathy I would think that I need high amounts of B12.

I also recently was told I have low lymphocytes and I'm anemic, which apparently I have been in the past and nobody has ever treated me for this. I had no idea. Should I supplement for anemia and how?

Current supplements are multi-vit (RAW for women), E, D3 (I am on the low side testing), Folic Acid, Mobility 2 (chinese herbal from acupuncturist) T3 (new from my hormone doc), progesterone cream (new from my hormone doc), Inflammacore drink mix (from hormone doc), probiotics (trying to remember these)

Medications are plaquenil for MCTD, ambien (if I don't take it I don't sleep, period), and now elavil (rheum gave me for the neuropathy).

I have tried to take magnesium, but I feel worse when I take it- it's called Malic Magnesium and includes high amount of B6, and malic acid. Everytime I start it I feel like I feel worse. I have also tried alpha lipoic acid but then I didn't think I needed it. I thought I had structural problems with my feet. Now I know I should have kept taking it. My toe pain has progressed to include all of both of my feet, and ankles, and it BURNS. or feels like my feet are in ice.

Sorry I just keep writing. If anyone can help me with my supplement question that would be great! Thanks! Oh, and I'm 36 years old with hormone problems - unless those symptoms are related to this.

Geraldine

[mrsD]

Welcome to NeuroTalk, Geraldine.

It is hard to answer your questions. I think you should call the doctor and get the actual test result for the B12 in numbers.

What she thinks is high, may not in fact be high.
And yes your intake from supplements may artificially raise the results.

But B12 has no upper limit, so whatever reading is "high" is not
an issue. What is an issue is whether you need it or not.

Anemia can be from many things. Doctors should supervise you if you they recommend iron supplements. But anemia can come from low copper, kidney disease, internal bleeding, heavy periods for women, and other causes. Low white cells are problematic if below 3000 or so.

I'll have to look up your supplements, perhaps tomorrow. Can't do that tonight.

[Geraldine]

Thanks for your response mrsD., I will take a moment tonight and look over my test results again, and see if I might have my B results - I believe they were sent to an endo who then gave them to me, so I should have them. I will be getting copies of all my tests from now on.

On another note, I'm also on an allergy elimination diet that I started 10 days ago, which eliminates almost everything. That is being done through my hormone doctor, so if any of my problems are caused by food intolerances I should know that soon.

[mrsD]

Not all PN is due to low B12.

Some is. Some is not.

If you are hypothyroid? That is a big trigger IMO. It is what started mine off 30 yrs ago!

[Geraldine]

Originally Posted by mrsD

Not all PN is due to low B12.

Some is. Some is not.

If you are hypothyroid? That is a big trigger IMO. It is what started mine off 30 yrs ago!

Problem is, my thyroid levels were in range, but my TSH was on the upper side of the range, and my T3 and T4 were on the lower side.

The doctor gave me T3 probably because of a number of reasons, one being my mctd or my fibro. Is it that some people don't utilize the T3 they make, or they don't convert enough, so the doc gave me a small amount of T3 to take once a day. - Something like that? I had been BEGGING doctors, numerous gynes, my rheum, to do the thyroid panel. All of them would only do the TSH and then look at me like I was stupid for even mentioning the T3 and T4. But everytime I looked online, there was the T3 and T4 possibility. I even sent my bloodwork to an endo and told them my hormones were out of whack, (MANY symptoms including hot flashes, continuously having other cyclical problems, not being able to conceive). They did not even pay attention to me. Told me to go to a gyne (been there done that) In order to finally get my thyroid panel done, and other hormones checked, I had to call an anti-aging/hormone specialist and pay a bundle for the tests.

So I'm not sure if it's thyroid. I have actually lost weight, I'm too skinny. But I was also low on progesterone. The gynes told me my hormones were fine, and one told me I was low in estrogen and was having me use estrace. I have zero faith in doctors right now. Even this hormone doc is having me do the most horrible elimination diet, I feel so sick and can hardly stand, I don't even know how I've done it so far, there is so much preparation involved, I'm in the kitchen most of the time. But I'm going to get through it because I need to know...

[Geraldine]

I now know why the endo didn't see me. I asked for both doctors to send over my lab work - and after looking through them neither of those doctors sent my thyroid tests. And neither doctor sent all my labs. I am missing most of my labs from my gyne, and I only have a few from my rheum.

I checked my last B12 test. Out of a range of 200-1100, it is 1329
I also had a high rheumatoid factor at that time.

I checked my vit D tests. In March 2010 I was at a total of 31, D3 was 31 and D2 says <4

In October 2010 after I had taken vit D prescription, I was at a total of 48. D3 33, D2 15

In June of 2011 I was at a total of 41, D3 35, D2 6

My recent vit D said a total of 40. My hormone doctor said it needs to be between 60 and 90. He told me to take 6000 IU D3 every day for a week, then go to 4000 IU. Is that enough? When I took prescription amounts I still only had a total of 48.

My TSH was 2.09 with range of .4 - 4.5
My hormone doc said optimal is .2 - 2.4, so I was on the high side he said.

T4 was 1.1 in range of .8 - 1.8
T3 was 2.8 in range of 2.3 - 4.2 - This is what he has given me.

My white blood cell count is low at 3.1 in range of 3.8 - 10.8, red blood cell low at 3.67, hematocrit low at 34.4, absolute lymphocytes low at 710 in range of 850 - 3900

Progesterone was 13 out of 75-270, however I don't think I had ovulated yet, this was on day 21. And my evening cortisol was high, while my night cortisol was normal but on the lower side. I thought my cortisol was going to be very high.

mrsD, if you or anyone else can tell me anything about these tests, I would greatly appreciate it!

Thank you!

Geraldine

[mrsD]

Cortisol is supposed to be lower during the night. It reaches its lowest point around 3-4am. Cortisol fluctuates during the 24hr day. Highest in morning, a dip at 4pm, a slight rise after dinner, but smaller than the morning reading, and the lowest at 4am or so.

The Inflammacore looks okay.

I cannot comment on the Chinese herbs... given what China is exporting these days...I myself would never take them.
You can buy ginger root in US and that is the most commonly used for inflammation. Puritan's Pride has it. Another good anti-inflammatory is Curcumin. But it needs to be in a form that has been enhanced for better absorption. CurcuGel is one brand that is enhanced. The best is LongVida, but it is expensive.

This link was just posted today: defective Chinese glass.
I offer it as a further example of defective, or tainted Chinese products.
http://au.news.yahoo.com/today-tonig...atch/27287084/

China continues to poison its own children with tainted milk with melamine added, poisoned pet food exported, damaged drugs that have killed children in this country exported (heparin, methotrexate), herbs tainted with drugs, exploding Pyrex cookware (China bought the trademark name Pyrex), exploding glass, toxic toys with lead and cadmium, and whatnot!

The RX form of Vit D is D2 and not very useful to the human body. D3 is much more effective. But doctors continue to give the RX anyway. What a waste! The average rule for raising D3 is 1000IU per 10 points in the test range. Some people need more, some less. 6000 IU D3 sounds like a typical dose.

If you tested high for RH factor, you have some inflammation going on. That test is typically inaccurate with false negatives, but a positive test indicates you have RA .

The range for B12 in US has that lower number of 200...which is not accurate anymore. The lower end should be 400 now.
Some doctors know this and many don't.
If you were taking a supplement you might test high. There is no upper limit for B12, so it is not worrisome if you have high levels. In fact some people require higher levels than others.

[Geraldine]

Thank you for that information, the vit D info really makes a lot of sense. After my use of prescription vit D only my D2 rose, which gave me a higher total number. So right now I am on the low side of D3.

For B12, I was taking a sublingual - but I have stopped taking it.

The Rheumatoid Factor will show positive in other autoimmune diseases as well, particularly sjogren's syndrome (which I do have a lot of "dry" problems) and SLE. This is why I was initially dx'd with RA, but that dx changed when a different panel was done, which said I was positive for U1 - RNP antibodies. I do get symptoms of RA at times.

The Chinese Herbals are not from China. They are produced by Health Concerns, a company in Oakland, CA. The formula is based on a Chinese traditional formula, using modern research. They have saved my quality of life up to now, otherwise I would still be having the fibro mac truck pain that I used to get. Now, my acupuncturist has increased the amount I take due to the neuropathy. It is supposed to help. The ingredients: red peony root, tang kuei root, ligusticum root, rehmannia root, persica kernel, white atractylodes rhizome, poria scerotium, citrus peel, siler root, vitex fruit, gentiana root, achyranthes root, chiang-huo rhizome, clematis root, angelica root, licorice root. I've talked with a company in Atlanta that sells these types of herbs and have learned that a lot of people give these to their dogs who have arthritis as well.

Thanks again mrsD for your info, I believe I am still low in vit D. I am going to continue supplementing that. I also will take a methyl B12.

But my question still remains, should I avoid starting the B12 until after my neuro appointment in December or should I start now. The appt isn't for over a month, and just in case the vitamins would help, I want to do whatever I can to avoid further problems. But I don't want faulty tests. thanks!!

[mrsD]

I believe that the herbs come from all over the world.
India is a large producer, and so is China.

Notice the lack of mention of where the herbs come from in this
long "assurance" page. Those of us here have seen many many websites with believeable information, like this that sort of ignore the basic questions, while providing lots of other details.
And I notice too that quantities of the herbs are not listed. So you don't know how much is in each capsule?

http://www.healthconcerns.com/why_assurance.php

Often what is not said can be the most important.

For example, Guggulipids were very popular a while back and hopefully were going to become a replacement for statins to control cholesterol. Many "quality assured" suppliers in US provided them. Then a person in Boston decided to test them himself and found LEAD in them. Just about all gugguls came from India and the lead was traced to there.

http://docs.google.com/viewer?a=v&q=...NDaaRQd_41GbVg

Just before this information broke, a well known supplier in Canada -- Jarrow-- stopped making their guggul product.
I sent emails to two others, and they didn't even respond back to me!
Here is the Canadian info:
http://www.medicalnewstoday.com/releases/27621.php

So it is not only China. What the Chinese often do and this has happened with many of their herbal products is lace them with drugs. Statins, phenylbutazone (an anti-inflammatory taken off the market in US due to toxicity) and digoxin, have been found in various herbal mixtures for cholesterol, arthritis, and heart herbs respectively.

This link is very interesting too:
http://www.ebmedicine.net/topics.php...=19&seg_id=301

So I have to confess I remain skeptical. But is your choice in the end , however. With a complex diagnostic problem, removing variables is important, to get more accurate results in testing.
If phenylbutazone were in that product or heavy metals, you would certainly have toxicity issues clouding all your efforts for
help.

Keep in mind that licorice root is not safe for long term administration as it affects blood pressure and potassium levels.

This Commission E reference would be a good place to look up your herbal list, to find out facts about safety and effectiveness.
http://cms.herbalgram.org/commissione/index.html

We just had a poster on our PD forum buy a product from a doctor in India, purported to help Parkinson's. I don't know much about it, but I think this subject is on several blogs at this time. Well, she put the "pills" in a closet and it they were attacked by rats, which died there! This is her post!
Rather icky I do confess...but one can never tell what is going to happen sometimes!

http://neurotalk.psychcentral.com/thread160536.html