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Just back from my GP. Went back to him with new pain in my groin, (like a knife) had this for a week. Told him of the nerve pain in my top teeth and also the numbness on a small section of my lips. Funny these are all on the left side, however Pain, Tingling, Numbness and Burning are on both sides of my body, but below my knees.

All blood test are now back, and yes all clear like a lot of you guys.
Yes I think he has covered everything I have seen on here, from B12, diabetes, immune diseases, toxin checks, mercury, lead so on so on, Thyroid many many others. He has been great emailing me the lab reports.

He is trying to speed up my appointment with the neurologist to get a PET scan and has tried a referral to another Neurologist that might be able to get me in quicker than the 2 month appointment I currently have.

I think he is concerned at how my symptom's are worsening and indeed spreading.
As I am currently on 75mg Lyrica he has said to double that to 150mg per day and after a week or so go to 210mg if I'm still not getting any relief.

Fun and games here and I'm fine :) just want to get to the bottom of it. A little mad however they didn't find anything in the tests, I was so sure there would be an underlying illness that would be obvious.

Hoping my teaching will continue into the future but unsure with how quickly these other areas have popped up in the past week and also with how the increase of Lyrica will effect me.

Sorry to vent. I'm so so aware of how worse off a lot of you guys are than me, and I'm very grateful for all your help and advice.

Phil

Phil, it is good to read that the blood tests (which sound pretty thorough to me) did not show anything of concern.

I hope that your PET scan can be speeded up.

Autoimmune would be a good place to test for, and some spinal issue if you havnt tested for these yet.

Thanks, apparently autoimmune tests were clear, not sure about spinal. Is that spinal fluid or some other tests for that ?

So what were your B12 results exactly in numbers?
Labs still report lows as normal.

In US 400pg/ml is the new low .. Yours may be in
Nmol and need to be converted to compare.
People fall thru the cracks commonly with this test.

VITAMIN B12 FOLATE - 30/07/15

CUMULATIVE VITAMIN B12 AND FOLATE ASSAYS
Date 30/07/15
Time 00:00
Lab No 57139953

B12 Total 470 pmol/L (162-811)

Comment:
57139953
Serum Vitamin BFG0012 Assay:
Essentially normal BFG0012 levels, although liver disease if
present may falsely elevate the level.

Hi PHIL from Oz. I am from Oz too. Just want to let you know all those problems you say you have can actually be from the Lyrica. I took it for over 10 years and had awful problems with my health that no body could work out the cause. One day I decided to decrease the Lyrica and then learnt the hell of withdrawal. It took a year to reduce from 150mg Lyrica and 800mg Neurontin. That is when I found out the drug was the actual cause of my weird side effects like you just shared. It has been a year off Lyrica now and 6 months of all meds. My life is getting better. A helpful support group for those on Lyrica with problems is lyricasurvivors on FaceBook.

Thank you McKenzie. I have only been on Lyrica for 1 week and I have had all the symptoms before starting the medication. Only the nerve pain in my teeth is new.

Thanks for those numbers.... when converted to US units you are at 637 pg/ml. This is above the 400 minimum, but not by much.
If you were taking any vitamins at all, and didn't stop them you could report with an artificial high.

Most of us here with PN keep our levels at 1000 or above, to ensure that the B12 is getting into the spinal cord and brain more easily.

You can also show normal levels of B12 if you are not converting it to methyl form. The old unconverted stays in the blood serum and will show up in the testing. Nonconverters, have a DNA mutation that messes up activation of B12 to its methyl active form. It is estimated that 10-30% have this variant either in heterzygous (both genes missing) or homozygous (one gene missing) form.

The posters here who have had this testing done have all shown some mutations.
Here is a link explaining in more detail:
http://doccarnahan.blogspot.com/2013...-big-deal.html

To check if your B12 is actually working, there is a test besides the DNA one, and it is called MMA. If the MMA test is low, that means that B12 is working in it right form to metabolize it away.
A high MMA result reflects B12 failure --hence no methylation going on.

This link explains the MTHFR mutation in detail.
http://mthfr.net/

This is becoming more commonly understood, as the information is only about 10 yrs old. But many doctors were not educated on this topic so remain confused or clueless about it.
Your folate levels were not in your post, but if they are elevated or if your MCV is almost out of range or high, they can be clues to the fact that B12 is not working for you.

Hi Phil, I feel your frustration as I'm sure many of us here do. It's so hard to believe that the cause can't be found for such a terrible disease.
I have to tell you that I tried the Lyrica and it made me feel very drunk even on a low dose. It wasn't helping with the pain and increasing the dose made me incredibly dizzy and my thinking was impaired even beyond the "brain fog". I also think it made me very depressed and hopeless. This was only 3 weeks, but I knew it wasn't going to work for me. It helps many people tremendously, but every one is different.
Can/did you doctor give you anything to take as needed?

I don't think the lyrica can cause new or more nerve pain, it's probably the progression of what is happening.
Hopefully the attack will settle down after it gets worse.

Thank you MrsD. Certainly a lot to consider. Will see what the PET scan shows then go from there. Really appreciate your help and advice.
Phil

Thanks Healthgirl. By the looks of things I have to get the dosage right. Enough to take off the edge but not over balance with the side affects of the Lyrica.
Phil

Yes I can notice changes in my thinking already, but will try for a while to see where it goes. No he hasn't given me any alternatives as yet if that's what you mean.

Hi :) Do you have a link for that number please? I can't find anything about it, and my labs just came back "normal" at 316. Thanks.

http://www.aafp.org/afp/2003/0301/p979.html

The Japanese have a cutoff low for B12 over 500 BTW... as they had an epidemic of low B12 that maimed and killed many thousands of people in the late 70's. (it was from a common drug called Vioform, which has been taken off the market here long ago. It is now called clioquinol-- an antifungal and used for traveler's diarrhea in the past. It was very popular in Japan.)

https://chriskresser.com/b12-deficie...-consequences/

what autoimmune were you tested for?

Not sure what autoimmune was tested . I have all the lab reports but not sure what I'm looking at. Only going on what the GP says....all clear

Phil, if you want to you could post the details of the lab reports about autoimmunity here (or by PM if you would prefer).

I (day job stuff) know a fair bit of immunology so might be able to comment.

Did they test your immuglobin levels for auto-immune testing, the igg, igm etc? One dr did for me and it was part of diagnosing my neuropathy as immune related.
Then other doctors I have seen have said that the high igg and igm are not a concern and they don't even know why they were tested. Makes it confusing when there are so many different opinions concerning neuropathy

It's not just that there are so many different medical opinions concerning neuropathy that are confusing - there are more than 100 different types of neuropathy and just as many different causes. That's why trying to get a definitive diagnosis can be difficult. Symptoms, prognosis and treatments can all vary depending on type and/or cause. I think this may also be part of the reason why there is limited funding for research in spite of the prevalence of the condition.

Sorry for changing tack there Phil. MrsD is right about the lab ranges for B12 being too low. I came across an Aust. Govt. paper that recommended 200pmol/L as a minimum safe level. (the 400 pg/ml that MrsD recommends converts to 295 pmol/L).

Hope your PET scan uncovers something.

I'm not sure,I will go back through the test results and have a look. Yes it's confusing and frustrating. Thanks for your help.

Thanks blues fan yes hanging out for the scan.

[QUOTE=kiwi33;1160912]Phil, if you want to you could post the details of the lab reports about autoimmunity here (or by PM if you would prefer).

is this the test?


MICROBIAL SEROLOGY

RRV IgG (EIA): Negative
RRV IgM (EIA): Negative

No serological evidence of exposure.
Please repeat serology in approximately 14 days.

Phil, RRV probably stands for Ross River Virus. People who are infected with RRV often develop polyarthritis - this is a form of arthritis which involves five or more joints simultaneously.

If you are infected with RRV there would be antibodies (IgM, produced shortly after infection and IgG, produced later) in your blood specific for it.

Those tests came back negative (EIA = Enzyme ImmunoAssay is the name of the procedure that was used).

I am impressed that your doctors checked that possibility out.

Yes he is the good old fashion doc. He sits down and talks to you. Great bloke.

I'm glad you have a good doctor, Phil. I'm glad you don't have Ross River Fever, but I hope you get some answers soon.

- regarding testing for RRV.

I'm in SE Qld and Ross River Fever is an epidemic. We had late cyclones and extreme heat this year. According to Queensland Health there were almost 3000 cases of Ross River Fever reported in inner city Brisbane alone in the 3 months from January to March this year.

I don't live there, but I do live in a bit of a hot spot myself surrounded by a fresh water lake. It's unbelievably common now in the south of the State whereas once it was mostly found north of the Tropic of Capricorn and in areas around Townsville, Cairns etc., so anyone presenting with certain symptoms such as unexplained pain, rash, fever or fatigue will be tested (mainly signs of post viral syndrome / chronic fatigue syndrome).

Believe it or not, a vaccine was developed sometime in the '80s but it was not "considered financially viable to manufacture". They'll be wishing they did now.

Sorry to ramble on about it. :o

Thanks for the support. Yes good one to rule out. Like most may never get an answer. Will be good to get the PET scan out of the way and maybe some answers there.
Thanks again.

You have a great attitude. That goes a long way towards relief.