Should I write to my clinic about this?

[Deja Q]

This is embarrassing to ask.

Hello. I first had an odd bout of diahhrea and occasional nausea/vomiting that lasted for over a month in July 2003, which to this day remains unexplained. I'd thought nothing of it, except I'd continually get tired, have a consistent tremor and occasional left-leg spasm. My arms would get fatigued quite often and I'd have memory and anxiety/nervousness problems. (though I've been diagosed with bipolar in the past.) There are other issues, including typing problems and worsened dyslexia (reversing letters or misplacing names) I don't recall them right now.

In 2004, my (ex) general practitioner dismissed me as having an anxiety problem. I reluctantly saw a psychiatrist who gave me zoloft. It made me too tired to even work. He did not believe me and the day I fell unconscious after taking a MINUTE quantity of klonopin for a panic attack, where co-workers literally dragged me into his office. Indeed, the co-worker told me that the psychiatrist said "You really mean he's been having these problems?!" (upon my next visit, they also accused me of hystrionics as I didn't need any help leaving that day, though I was walking slowly. Well, duh, it was 2 hours since I'd shown up after regaining consciousness and I still don't remember anything else that happened that day with any clarity at all! They had to tell me what they thought and even then I can't answer it. I can get hystrionic, but let's be serious: If you'd fallen unconscious for a few hours and then remained severely groggy for 2 hours more, wouldn't you be moving slowly when leaving too?)

The problems continued to get worse (the diahhrea occasionally recurred but was NEVER as bad or consistent as July 2003)

Both the psychiatrist and even my newest GP recommended a neurologist, albeit reluctantly. (I didn't have enough solid proof to give the GP a definite 'yes' but he suspected enough to give me the referral. The psychiatrist in tandem with the counselor felt I had schizotypal disorder, a diagnosis made after only 2 visits. :wow:

It turns out I've a couple of legitimiate things going on: 1. A disc in my cervical spine was pressing into the spinal cord. This has since been removed. I've seen some improvements with the leg spasming and some arm strength has returned, but those are the only improvements so far. The fine tremor remains consistent.

But the other condition, which requires me to take B12 supplements daily or else I will feel physically and mentally ill again, remains. I've discovered that if I do not take it for 2 days, I will feel lethargic and very tired, and the tremor gets worse. It's not pleasant.

Now my neurologist, a true life saver, had a B12 test done for me back in December (2004). Here are the results that worry me:

B12: 357 (normal is 211-911, but 357 seems kind of a low 'normal'. Especially when I eat a reasonable amount of meat products, though 5 years ago I was a devout vegetarian... but that lasted only a few months.)
Homocysteine: 12.7 (normal is under 11.4 - the neuro was worried about heart disease)
Methylmalonic Acid: 83 (normal is 90 tp 279 - clearly, another indicator that there is a problem that desperately needs addressing)

Now my Folate level was 15.7 (normal is 3.0 or more) - no problem here.

My neuro had prescribed Foltx, but I found it more economical to merely purchase OTC B12 supplements (500mcg).

Again, I have noticed a distinct improvement in my energy levels with B12 supplements and even my general mood, while still problematic given the right conditions, is FAR BETTER than before. There's a world of difference.

Are there other tests I should have done to see if there is a cure, apart from popping pills daily?

And is it worth my bother to write to the clinic that I no longer go to; because nobody bothered to look at B12, which is VERY important with nervous system functions and CAN show symptoms of or exacerbate mental illnesses? I was annoyed when I was slagged off as being an "anxiety" case. And then utterly disgusted when my ex-psychiatrist told my co-worker in complete surprise that "He's really having these problems?!" Not just disgusted. Livid. You tell these people what is going on and then they don't believe you?!

Thanks much!

[redqueen]

1. YES, write them!

They need to know how badly they screwed up!

Glad you finally got the care you deserve. :hug:

[Deja Q]

5. I shall. I even found this article that helps prove my side:

http://www.labtestsonline.org/understanding/conditions/vitaminb12.html


Vitamin B12 and Folate Deficiency

B12 and folate are B complex vitamins that are necessary for normal red blood cell formation, tissue and cellular repair, and DNA synthesis. A B12 and/or folate deficiency reflects a chronic shortage of one or both of these vitamins. Since the body stores 3 to 5 years worth of B12 and several months’ supply of folate in the liver, deficiencies and their associated symptoms can take months to years to manifest in adults. (snip and I added emphasis)

Over time, a deficiency in either B12 or folate can lead to macrocytic anemia, a condition characterized by the production of fewer, but larger red blood cells and a decreased ability to carry oxygen. Patients who have this condition may tire easily, be weak, and be short of breath. A deficiency in B12 can also result in varying degrees of neuropathy, nerve damage that can cause tingling and numbness in the patient’s hands and feet and mental changes such as confusion, irritability, and depression. (emphasis added. Also, while I didn't get any anemia tests done, the symptoms are way too obvious to be a coincidence. Not for my age.)

(snip).

Oh, "irritability" is too right. While that ties into an admitted anxiety condition, the fact that B12 supplements have only helped me feel more at ease is proof that there's a lot more going on that nobody within the clinic even bothered to look for. (a 3rd party neurologist, who was outside the clinic had done the test. I sure as hell would not trust anybody within the clinic. Not by that point. And I was right.)

[Redstone]

2. Since you're seeing a neurologist,

has he looked into the possibilityof MS? That can exhibit an awfully wide range of symptoms.

Redstone

[Deja Q]

3. Yes. The MRI scan was normal. Thank God...

I have a close friend with MS. She's been of immense help to me, in many ways... I wish she didn't have it, she does not deserve to have it...

While many of my symptoms are the same as hers, none that were red flags for MS had been proven. So I'm clear of MS.

Tingling in hands and feet (extremities) is another issue that seems to come and go as well. I just did a check and that might be more incidental rather than coincidental with my potential B12 issue. But the supplements have done me nothing but good, I've felt the difference.

[benddem]

4. were you tested for epstien barr?

lots of your symptoms sound like that.

[Deja Q]

6. That's Mono, right?

Doesn't look like it. No blood tests that I can see.

But they did check for swollen glands, sore throat, and fever, all of which were not present.

[benddem]

8. no it isn't mono

it is a specific virus and they need to test for it.

[UncleSepp]

7. YES, write

If you don't get a written response that you can put in your medical file that says "Oops, we screwed up", tell everyone you can about this quackery. It's absolutely inexcusable!