Is this just a misunderstanding between my GP/Neuro?

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Is this just a misunderstanding between my GP/Neuro?

Postby Nenu » Mon May 05, 2008 4:25 pm

I saw my GP today for the first time since I was diagnosed with MS in March (the 5th). At the time of my lumbar puncture, 11 vials of blood were taken, and I was certain that the tests would include everything I have heard others speak about (including lyme, hiv, lupus, thyroid, vitamin deficiencies).

I asked my GP today, and she pulled the results from a computer. She showed me the sheets, which I could not for the life of me understand, and she indicated that vitamin deficiencies were not on it.

What???

So I asked her to send me for those tests, and got the order for blood work. Now I'm wondering.... what DID they test in those 11 vials if vitamins were not tested? I feel like I am completely in the dark. I assumed it was a standard list of things tested during an MS diagnosis. Can this vary from person to person, neurologist to neurologist? I thought what I had was a thorough screening.. :(
Dx RRMS March 5, 2008.
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Postby jimmylegs » Mon May 05, 2008 8:43 pm

ah ha good one nenu.
seriously, as i recall the only deficiency they would test for as part of their differential is b12 (they *must* have done that, along with a PCA test)
they do take a lot of blood, but it's all to do with functions of various things.
in my experience, none of the studied nutrient conditions in the ms literature are any part of the dx except b12.
so yea for the nutrition, vitamins, trace elements etc the ball is all in your court nenu! sucks, but as far as i know, true. if you have a GP that will order the tests for you, then you're in charge and you can go to town. if you do get into testing, keep it firmly in mind that the "normal" range includes sick people. a normal lab result like 194 for uric acid still puts you right in the middle of ms land.
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Postby Nenu » Mon May 05, 2008 10:18 pm

Ugh, so confusing. Is there a 'standard' test they do? Or is it different with each neurologist? Like I said, there is the other stuff that I figured they also had to rule out. Only 'autoimmune' was checked on the sheet.... but what exactly in autoimmune?
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Postby jimmylegs » Mon May 05, 2008 11:50 pm

yep it's kind of a bear. there is supposed to be a standard ms diagnostic rubric of sorts. x amount of spine and brain lesions, oligoclonal bands in the csf indicative of chronic inflammation, dissemination of 'flares' in time and space, ruling out b12 deficiency, and my personal fave: absence of any other explanatory cause (which in my opinion is very much under-investigated).
i don't know exactly what your checklist looks like... you don't mean they ruled out autoimmune, i assume. from what i understand it means there is an inflammatory response that damages your own tissues. my reading on that has brought me to the conclusion that the body has one set of chemical signals for "attack" and another for "stop attacking" and in the autoimmune scenario, the body doesn't have the necessary ingredients for the "stop attack" formula. not much less confusing, i don't imagine!
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Postby Nenu » Tue May 06, 2008 12:01 am

No, I believe they ruled out autoimmune... but what does 'autoimmune' include exactly? It just seems those from the US (for example) I've chatted with can tell me that they had lyme, lupus, hiv ruled out. These are 3 autoimmune diseases/conditions that make sense to look for and rule out. In my case, the sheet was check marked to check blood for simply "autoimmune", but are those 3 items mentioned included in that?
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Postby jimmylegs » Tue May 06, 2008 7:15 am

hi again, my understanding of the current scientific consensus regarding ms is that it is an autoimmune inflammatory condition. this can be debated but it's the party line right now.
there are more than 80 autoimmune diseases apparently; here is a partial list:
http://en.wikipedia.org/wiki/List_of_autoimmune_diseases
i suppose they could have ruled out "other" autoimmune but i really wouldn't know which few they'd be after.
i'm pretty sure i did not get any lyme lupus or hiv testing at dx time. they just made me look at blinking light patterns and stuck me with pins and shoved some electric probes in my muscles (that's a fun one) and stuffed me in the mri a couple times and took buckets of blood *and* spinal fluid, scratched my feet, jerked my extremities around, and signed me up for $20,000 per year of self-injection and side effects for the rest of my life!! no thanks. and oh by the way, here's a massive headache caused by the needle in your spinal cord, and to fix it we're going to stick with another needle. yea right. good times lol ;)
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Postby Nenu » Tue May 06, 2008 8:30 am

I got a wicked spinal headache the night after my spinal. I was sitting around at 8 pm and suddenly it came on, by 10 pm I was at the hospital, and luckily at the time I still had my IV in, they rushed me into the back and put me on some type of migraine medicine. I never had a blood patch (that I've heard about), but I definitely blacked out during this ordeal with the headache, and woke up at 6 am to empty IV bags hanging there, and no headache. It was the worst headache I have ever experienced that's for sure.
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Postby jimmylegs » Tue May 06, 2008 9:20 am

it's killer eh nenu!
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Postby Nenu » Tue May 06, 2008 9:55 am

I thought I was dying. That's how horrible I felt. I couldn't sit down in the waiting room, so when the triage nurse saw me, and then I told her I couldn't sit, and then explained why, she took my pulse which was 146/xx (it's generally 80/60 values) and rushed me in fast.
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Postby jimmylegs » Tue May 06, 2008 10:01 am

scary!! wow yea it must've been odd to have to lie down in the ER?? looking back i can't believe how i fought against it for days before i 1) complained to my neuro, 2) heard "blood patch" and 3) confined myself to the couch for three days to avoid any more spine+needle interactions!
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Postby Nenu » Tue May 06, 2008 10:07 am

Oh no, I stood up with my eyes closed and leaned against a wall. When triage took my pulse and heard "spinal tap yesterday" I think she knew it was a case of "get this poor girl in fast". If I sat, it felt like my head was being crushed.
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Postby jimmylegs » Tue May 06, 2008 10:17 am

oh freaky. with mine, it was stay horizontal or suffer the consequences.
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Postby Nenu » Tue May 06, 2008 11:10 am

When I got in there and they began IV'ing the migraine stuff, I could taste it in the back of my throat. It tasted awful, nothing like the steroids... so coupled with the migraine, I began to panic. The nurse actually shut the migraine stuff off, and waited for me to black out/pass out from shock I was in, and then must have started it back up because as I said, I woke up to empty bags dangling there.

Waking up after that headache was pretty surreal. I got up, got dressed, waked my IV rack down to the desk and asked a nurse to come help disconnect me. Then I went to the Tim Horton's LOL... and the back downstairs for my steroid IV. :p
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Postby jimmylegs » Tue May 06, 2008 11:31 am

weird!!! i never got any steroids what has to be wrong with you to warrant them?
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Postby Artifishual » Tue May 06, 2008 11:36 am

jimmylegs wrote:weird!!! i never got any steroids what has to be wrong with you to warrant them?

Not to but in but, hehehe everytime i recieved steroids was when i started the ms hug thing after my secound time with it the dr put me on a monthly regimen of iv roids. Since my Rituxan therapy i havent' had them but once. just my .02 worth. arti
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