Undiagnosed Pain = Drug Addict

[Dylan]

A couple years ago, I started to get pain in my knees. It was an annoyance for a while but it eventually forced me in to see the doctor. No one could do anything and it persisted for 8 months.
I went through the hell of not being able to work efficiently or concentrate. The judgmental doctors and nurses even convinced I had a serious drug addiction with the painkillers. I broke down and cried on many occasions due to the pain that no one would help me manage while my sister downed 180mg of oxycodone per day and called me a drug addict.

That ended around 18 months ago. The pain went away completely and I haven't touched any narcotics or seen a doctor since. Now it's back and I've resumed my journey through hell.

Here are the facts that I think are relevant. I think it's a shot in the dark that it's MS, but I sure don't trust the doctors to tell me what it is.

Pain at knee joints, dull aching. Progresses to ankle area, upper thigh, shoulders, arms, and hands. Movement has no effect on it.
There is no inflammation or any visible signs whatsoever that I have pain. The only proof I have is that I eventually start shaking, hyperventilating, and my pulse goes way up (lucky me, the idiots thought I was going through withdrawal).

Lyrica may have killed the pain but it was too expensive to continue at the time so I don't know if it was actually effective.
What did not work: steroids, anti-inflammatories, methotrexate, other immunosuppressants, gabapentin, heating, cooling, chiropractic, punching my legs repeatedly in frustration, and exercise.
Blood tests so far have come back normal (except TSH levels, but that runs in the family).
MRI of the brain came back normal.
X-Ray of knees came back normal.
Acupuncture seemed to relieve the pain a little, but not sufficiently.

Things are worse this time around. It spreads to the extremities more often than not.
I need to find out what is wrong so I can treat it or at least get help to manage it.
I've got a couple weeks of tramadol before my quality of life comes to an end.

If you can offer any insight, please do so and thank you.

[lyndacarol]

I think it's a shot in the dark that it's MS, but I sure don't trust the doctors to tell me what it is.
...
Blood tests so far have come back normal (except TSH levels, but that runs in the family).
…
If you can offer any insight, please do so and thank you.

Welcome to ThisIsMS, Dylan. Here are my thoughts:

Your symptoms are found in many conditions. The other, more likely causes must be ruled out before MS can be diagnosed.

In your blood tests, your doctors should have included the initial screening for a possible vitamin B12 deficiency. This would include #1 a serum B12 test (or the newer HoloTc test, which is more accurate than the serum B12), #2 a serum or RBC (red blood cell) folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test (either the serum or urinary form). Also, request your own copy of any test results – it is important to have the actual numbers; "normal" is not adequate information.



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses and their new book, What's Wrong with My Child?); 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).

Thyroid problems often occur with a B12 deficiency. By the way, B12 deficiency can run in families, too.

[Scott1]

Hi,

It may be worthwhile investigating whether you have fibromyalgia.

When your pulse "goes up" what does your blood pressure reading do?

Regards

[Dylan]

Scott, I am under the impression that fibromyalgia is just a BS excuse doctors use when they're to proud to admit they don't know what's wrong. I'm sorry I can't answer your question, I don't remember. The high pulse is just a response to pain. I don't remember blood pressure being affected.

Hi Lynda. Thanks for spending time on a reply. I have ruled out B12 deficiency. I've been taking high doses for a month now to cure major depressive disorder. My uncle suggested it and it basically obliterated my depression that's been messing me up for 20 years. I'll spread the info though, maybe someone else in my family can benefit. I found tests showing B12 and Folate. They seemed fine. I didn't see homocysteine or methylmalonic acid, what are those?

[lyndacarol]

Hi Lynda. Thanks for spending time on a reply. I have ruled out B12 deficiency. I've been taking high doses for a month now to cure major depressive disorder. My uncle suggested it and it basically obliterated my depression that's been messing me up for 20 years. I'll spread the info though, maybe someone else in my family can benefit. I found tests showing B12 and Folate. They seemed fine. I didn't see homocysteine or methylmalonic acid, what are those?

Since you have been taking high doses of vitamin B12 for the last month, blood tests at this time would yield skewed and unreliable results on a possible B12 deficiency.

You mention "major depressive disorder" and in your first post that you had taken and found that gabapentin did not improve your pain. I hope you read this recent post by NHE (http://www.thisisms.com/forum/general-m ... ml#p235877):

The People's Pharmacy discusses the risks of off-label Gabapentin use, the side effects of which include severe depression and suicide. Gabapentin is only approved by the FDA as an adjunctive treatment for epilepsy. Every other use, including MS, is an unapproved, off-label prescription.

Gabapentin for Pain Drove Patient to Brink of Suicide
http://www.peoplespharmacy.com/2015/08/ ... f-suicide/

If the B12 and Folate test results you found were performed when you were NOT taking supplements, are you willing to share the results? Many experts believe that the standard ranges set by labs in the US are outdated and are set too low.

The homocysteine test and the methylmalonic acid test can indicate low B12 levels (if the Hcy and MMA are elevated). They have other uses too – for instance, a high homocysteine level is a better indicator of the risk of heart disease than cholesterol testing is.

[Scott1]

I think you'll find fibromyalgia is a BS excuse like MS is.

Regards

[NHE]

I didn't see homocysteine or methylmalonic acid, what are those?

Homocysteine and methylmalonic acid are biomarkers that indicate how well your body is utilizing B12. However, there are caveats that need to be considered in interpreting the test results.

The methionine synthase enzyme uses B12 (or more specifically, methylcobalamin) as a cofactor to transfer a methyl group to homocysteine converting it to methionine. As such, homocysteine is a toxic amino acid that can build up when B12 is low. It can also build up when either folate or vitamin B6 are low as well. So high levels of homocysteine are not specific to low B12, though they are a sign that something's gone awry with the methylation cycles and that it could be a B12 issue. High levels of homocysteine increase the risk of cardiovascular disease such as high blood pressure, stroke, heart attack and arrhythmia. They're also associated with an increased risk for dementia.

Methylmalonic acid can also build up when B12 is low. In this case, adenosylcobalamin is a cofactor for the methylmalonyl CoA mutase enzyme in the mitochondria that's used in the pathway which converts proprionic acid, a left over from odd chain fatty acid metabolism, into succinate so that it can be used in the Krebs Cycle. However, methylmalonic acid levels can be normal if one is taking antibiotics at the time of testing.

See figure 4 in the following paper for an overview of the two pathways using B12.
http://www.jbc.org/content/288/19/13186.full.pdf

[Dylan]

Folic Acid - 14.5 ng/mL. They state 3.0 is deficient.
B12 - 571 pg/mL. Range is 211 to 946.

I was not taking any vitamins during those tests. They were over a year ago. I never noticed any depression from Gabapentin, but I didn't use it long because it didn't work and I was already depressed, so it have been hard to tell.

So, B12 deficiency is out. Any other ideas?

Scott, can you elaborate? MS has a definitive cause and can be confirmed by tests. I don't know of any tests for or causes of fibromyalgia.

[lyndacarol]

Folic Acid - 14.5 ng/mL. They state 3.0 is deficient.
B12 - 571 pg/mL. Range is 211 to 946.

I was not taking any vitamins during those tests. They were over a year ago. I never noticed any depression from Gabapentin, but I didn't use it long because it didn't work and I was already depressed, so it have been hard to tell.

So, B12 deficiency is out. Any other ideas?

Scott, can you elaborate? MS has a definitive cause and can be confirmed by tests. I don't know of any tests for or causes of fibromyalgia.

Since you were not taking any vitamins when the folic acid and B12 tests were done, one can assume that the testing numbers are accurate. According to the lab's standard ranges, your results appear to be good. It may be that "B12 deficiency is out," as you say.

Please be aware that the serum B12 test measures the total B12 in the blood (80-96% of the total is carried on a transporter molecule that cannot deliver the B12 to the cells). Only the B12 carried on the transcobalamin II molecule (4-20% of the total) is "active" and can reach the cells. The HoloTc test is newer, more reliable; it measures this usable, "active" portion – unfortunately, the HoloTc is not yet available everywhere (There have been cases where people don't produce the proper transporter molecule at all.) In other words, there can be an adequate amount of B12 in the blood, but there can still be a deficiency in the tissues/cells.

By the way, major depression (even to the point of thoughts of suicide) can be a symptom of B12 deficiency. Depression is common to many other conditions, as well. In my opinion, a person should rule out the B12 possibility thoroughly. The "serum B12" test alone is not adequate for this. The serum homocysteine test and the methylmalonic acid test can confirm the findings of this serum B12 (or help to identify a deficiency). You might consider discussing this with your doctor.

Also, by the way, in your question to Scott… There is no known cause for MS. There is no specific test for MS.

[Scott1]

Hi,

Welcome to the world of the unknown. I think it might be worthwhile looking at the work of the cardiologist, Stephen Sinatra. He wrote in his book about how his program had helped with Fibromyalgia which is what your symptoms sound like to me. Proving what you have is going to be difficult as it is with MS and many other conditions.
I do use parts of his protocol and find them very useful and the thinking is very sound. Most of us are interested in what works. Here is a link to a website that sets out what he suggests without going into great detail - http://www.drsinatra.com/treat-fibromya ... bsolutely/

Regards