Monday, October 05, 2009

Hmmm ... do I dare get my hopes up again?

I went to a new nuerologist... wanted to discuss the fact that I had so many symptoms of MS but other than an MRI, there hasn't been anyone who wanted to seriously discuss why it wasn't MS in the past.

Big waste of time and money. He actually told me a) I have too many MS symptoms for it to be MS (which sounds pretty fishy to me) b) a clean MRI means no MS in his opinion (which sort of stopped me short - because if it's his opinion, it doesn't matter that I found multiple online sites that indicate that people can receive benefit from treatment even if MRIs were clean - facts are arguable, opinions are just that - opinions)..... and c) that it was probably a somatoform disorder... which is a fancy name for the condition they used to diagnose around a hundred years ago as hysteria... after all if a woman is complaining of poor health and you can't figure out what it is, it must be psychological. He REFUSED to consider any treatment for my symptoms unless I agreed to a psychiatric examination.

UMMM... I agreed at the time, because I don't have anything against psychology -- doesn't really matter if I think he's off his rockers if he thinks this is all in my head; more as a goad to want to prove him wrong.... but then again? What a waste of time and money!!!

ANYWAY - I went online to my support groups that I still visit a lot about clotting; and one of the women on there was venting about the fact that there are still patients getting put on an antidepressent for menopause symptoms... well, at least you don't feel bad that you're feeling unwell... right? So, I couldn't help responding... I typed up pretty much the first three paragraphs of this blog post - and mentioned that to date the only medication they have me on for my undiagnosed illness is an antidepressent... which comes first, the feeling ill and being treated like there's something psychotic about you or being depressed and then getting ill? UMMM I think the first is true... its depressing to get that 'look' - the look that's stating that you're just a hypochondriac because you're trying to fight for your own health... being proactive and not just sitting at home continously getting ill.

Guess what? She brought back up the B12 deficiency... because of my repeating the statement that bears repeating - "I have too many MS symptoms for it to be MS"... I believe I do have b12 deficiency, many family members have been diagnosed with it, however, I'm taking b12 and my test results are now normal... BUT, she had one sentence in her short email (wish I knew how to get to the point that quickly, don't you??).... "Most patients with normal test levels can still suffer symptoms until their dosage is increased and that most practitioners in the US are under-treating this condition".... hmmm... I investigated and found multiple studies online.

There might be some truth to this. But, I responded back - the specialists already think I'm nuts... how am I going to convince my doctors that they shouldn't trust test results for my treatment. Seems a little off.... and I'm already getting the 'look'.

And then I did some more searching. Its IMPOSSIBLE to get too much B12 in your system, there isn't any risk with taking more B12... you could take 1000 times the regular dose with no negative impact (not that I would)... and I got to thinking. Hmmm... I don't have to tell the doctor... as long as I don't go crazy and over do.

So, unfortunately, I'm almost out of B12 supplements. But, I did take 3 on Saturday, and since I'm almost out, only 1 on Sunday.

This morning when I woke up? I've recovered almost ALL of the feeling on both my left and right sides. Still a few numb patches and still some periods of increased numbness... BUT I regained A LOT OF FEELING!!!! woohoo!!!

So, without discussion with my doctor, my plan is to gradually increase my dosage over the next month and see how I feel. If I'm feeling like I do today, I'm going to shove the psychologist up the nuerologists *ss and let them tell me it's all in their head. Well, not really, but wow! I'm almost in tears.

Did you know that the Japanese standardly start their treatment out at 10 times a higher dosage than is common in the US and that the US is notoriously bad at diagnosing and treating this condition. Did you know that as this condition worsens, it causes MS lesions in the brain (which at least maybe I would finally have gotten put on MS medications, far too late, and probably with little effect)... Did you know it can also cause pernicious anemia - which can be fatal if not aggressively treated? I was at the bare minimum dosage... and then told that the fact that I wasn't feeling well was due to psychological trauma I incurred as a child. Bull cr*p.

Not all my symptoms are gone, and maybe, this isn't the answer to my prayers. But, it is helping. And if I find out that there are other things that it doesn't help, well maybe then.... they might find a single condition that was being exasperated and impossible to find because of all the B12 deficiency symptoms. I would really HATE to get my hopes up again... but my head is already starting to clear; I can feel the coldness of a breeze on my face again, the feel of my son's hair when I touch the top of his head.... I'm already pleased, and it's been only 48 hours.... only 48 hours after FOUR years of virtual misery. There is hope.... there is.... it's a scared it's going to get dashed and slaughtered little sliver of a thing, but it exists.

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