Still frustrated & confused

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Still frustrated & confused

Postby Rick1866 » Tue Jul 09, 2013 9:57 pm

Ok so I had my appt at the MS center and had a lenghty chat with the Neuro about Sx's and such and they determined that my Sx are not MS related, but infact says they are directly related too my L5 S1 back surgery
that did not relieve my Sx I had prior to the surgury,but still have the same Sx after surgery.
(the only MRI's I have are of my spine) so they ordred a new one of my spine & one of my brain).

And they said that I should have MS type leisions on my spine to cause the fatigue & leg issues I have.

My argument is this:
The sugery was suposed to relieve Sx of compressed nerves caused by the amount of fat in the thecal sac
which should have had an immediate effect for the better by the release of the pressure/compression of the nerves and would be able to walk and be on my feet with no problems for hours on end.

But instead what happens is within an hour I get the walking with cement shoes type fatigue from head to toe and takes 2-3 days of relaxing to recover.
Now keep in mind that I generally dont push myself to that level everyday or for that matter every week but I cant stop living now can I?
So my thought process is that if the nerves were/are compressed and not able to send, tells me that something is wrong somewhere.
And one would think that if nerves were/are damaged by the long time compression that the nerves as soon as I hit my feet when I get up and start moving around I should have the cement block feeling from the get go.

Or is this my new norm?

Now back to my Neuro visit they sugested that because my B levels are low (27 i think is what they said). So I should make an appt with my reg. Doc and have a B-12 shot to bring my levels up quicker and more effctively.

So I called my doc to set up an appt and also asked for a complete blood workup for all vitamins so I can work on the ones that are low and take suplements and work on eating foods that will help with getting vitamin levels optimal.
I missed their call back so they left a message on the machine wanting to know why I want the tests and what am I looking for (classic response from them) you know because thier the experts and I have no medical training for such matters.
But I am taking matters into my own hands because I feel I need to be my own doctor to figure this out and they seem to be of no help trying to find a solution to my issues or they are convinced that it is all due to my PRE & POST back surgey issues that have not gone away.

Now there is a possibility that this could very well vitamin related,But im just learning/researching vitamin cause & effect so we'll see.
So Im gonna need to call them back in the next day or so, but need to calm down first.

I just dont understand why they fight me like this!!!

And maybe it's time for a new doctor.
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Re: Still frustrated & confused

Postby jimmylegs » Wed Jul 10, 2013 3:10 am

27!! that is reaaally down there. b12 is a really logical go-to nutrient to look at. any idea why it's low in your case? what is your diet like?
fyi I've noticed that it's easier to get your levels up when your zinc is topped up to high normal. my b12 levels are pretty great with just diet plus b-vits in my multi. less supplementation than ever since dx

going forward, vit b12 deficiency is the #1 nutritional differential dx for ms. pretty well known in the mainstream but still my docs didn't believe me re my deficiency history because of a computer glitch, even though I told them i'd been vegan for years. any questions you have about b12, I've been there :S ugh..

it's hard not to be mad at the system BUT lots of resources to help you. realizing that it's up to you is step one. if you get too much attitude from the docs there are private options that may be something you could consider.

great idea re finding a receptive doc to work with. they do exist (I am lucky in that way)
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Re: Still frustrated & confused

Postby Rick1866 » Wed Jul 10, 2013 4:50 am

jimmylegs wrote:27!! that is reaaally down there. b12 is a really logical go-to nutrient to look at. any idea why it's low in your case? what is your diet like?
fyi I've noticed that it's easier to get your levels up when your zinc is topped up to high normal. my b12 levels are pretty great with just diet plus b-vits in my multi. less supplementation than ever since dx

going forward, vit b12 deficiency is the #1 nutritional differential dx for ms. my docs didn't believe me re my deficiency history because of a computer glitch, even though I told them i'd been vegan for years. any questions you have about b12, I've been there :S ugh..

it's hard not to be mad at the system BUT lots of resources to help you. realizing that it's up to you is step one. if you get too much attitude from the docs there are private options that may be something you could consider.

great idea re finding a receptive doc to work with. they do exist (I am lucky in that way)


Where to start: I'll try to explain via the short version. (the cause omeprazole,nutritionist,closeminded Dr's).

Started taking the omeprazole ( I have since learned it's a vit blocker) once daily 2 yrs ago. reg doc & neuro blamed weight for my weak,fatigued leg issues so my neuro actually set me up with a nutritionist for a better diet plan, smaller meals (3-4 meals instead of 1 big per day) & more fruits & veggies abt 800-1200 calories daily. And I have been doing that for abt 18 mnts now lost 15-20 lbs spine doc said that weight has little effect on the L5 S1 disc & nerves.

Sorry back to vitamins I believe the less beef,omep are the cause so I try to only take 1-2 times per week now and eat more beef like I used to,but follow the smaller meals approach,but Im sure that other low vits need to be addressed and that will help with the weight,diet & heartburn issues.

As far as private testing Ive been out of work for 6 yrs now and have no money's and this begging and borrowing is getting old (thank god for mothers) so Im kind of at the mercy of my doc's. And as soon as I possibly can Im changing docs.
Hopefully by the end of the year (maybe sooner) thats gonna change, would be great if I can find away to get proper testing done, it is top priority.
Not sure if my Nutritionist can order blood tests but will ask her she may get less resistance,but we'll see.
Out of the three doc's I see she's been the most helpful to date.

I get a monthly food card but I cant buy vitamins with it, pretty difficult situation but the upside is it's getting better and there is a light at the end of the tunnel money wise.

Sorry I know thats alot for just a couple little questions.
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Re: Still frustrated & confused

Postby jimmylegs » Wed Jul 10, 2013 5:10 am

omeprazole again! arg. i know it depletes magnesium, which is known to be low in ms patients, but will have to read more about its effects on other nutrients.

less beef could link up to the low b12 (since beef is a source of both zinc and b12, also both low in ms) but i'm surprised we're talking about a serum level of 27. and that's in pg/ml I bet! so even lower in pmol/l!

glad you have a helpful nutritionist and I hope you are successful getting the tests. please do bring your results here for interpretation!

it sucks when money is tight. i feel your pain :S i am very fortunate here to have a government system to help pay for the testing, and a helpful open minded family doctor.

have you read much about nutrient density in food? i can help you get the most bang for your food card buck, in terms of nutrition and 'fullness' if you are interested. has the potential to help things out on a few different levels.
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Re: Still frustrated & confused

Postby Rick1866 » Wed Jul 10, 2013 6:46 am

jimmylegs wrote:omeprazole again! arg. i know it depletes magnesium, which is known to be low in ms patients, but will have to read more about its effects on other nutrients.

less beef could link up to the low b12 (since beef is a source of both zinc and b12, also both low in ms) but i'm surprised we're talking about a serum level of 27. and that's in pg/ml I bet! so even lower in pmol/l!

glad you have a helpful nutritionist and I hope you are successful getting the tests. please do bring your results here for interpretation!

it sucks when money is tight. i feel your pain :S i am very fortunate here to have a government system to help pay for the testing, and a helpful open minded family doctor.

have you read much about nutrient density in food? i can help you get the most bang for your food card buck, in terms of nutrition and 'fullness' if you are interested. has the potential to help things out on a few different levels.

As far as the omeprazole goes I only take it if my heartburn is persistant, but for the most part i have gone back to tums with calcium after reading up a little on omeprazole.

The testing i dont think is a problem, I think that falls on the doc not wanting to because it undermines his authority so to speak (he seems to be the he's in control type).

I have not read anything on nutriant density but if your willing to share Iam willing to learn.
Most all foods cause me heartburn(and that may be gluten intake) which i think is whole wheats & grains but not really sure.

You and a few others have been more helpful to me than my doc's and is greatly appreaciated.
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Re: Still frustrated & confused

Postby jimmylegs » Wed Jul 10, 2013 8:30 am

i'd even can the tums and the omeprazole if I were you :S if you can stand it!

here's some more reading (my kind of guy - not 'let's control this unruly acid' but 'what the hell is wrong with this LES!?')

http://chriskresser.com/what-everybody- ... tburn-gerd
http://chriskresser.com/the-hidden-caus ... n-and-gerd

if you turn out to be low in zinc (sounds extremely likely) fixing it may make a difference, esp if these assertions about bacterial overgrowth in the stomach - that's a pretty clear indication of a nutritional imbalance. I still have some digging to do on zinc and muscle (eg sphincter) function - there's plenty of info but I have to sort through it. excess calcium interferes with zinc status...

would you send me a list of typical items you usually would need for a week of groceries? i can send feedback on that first.
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Re: Still frustrated & confused

Postby Rick1866 » Wed Jul 10, 2013 12:39 pm

jimmylegs wrote:i'd even can the tums and the omeprazole if I were you :S if you can stand it!

here's some more reading (my kind of guy - not 'let's control this unruly acid' but 'what the hell is wrong with this LES!?')

http://chriskresser.com/what-everybody- ... tburn-gerd
http://chriskresser.com/the-hidden-caus ... n-and-gerd

if you turn out to be low in zinc (sounds extremely likely) fixing it may make a difference, esp if these assertions about bacterial overgrowth in the stomach - that's a pretty clear indication of a nutritional imbalance. I still have some digging to do on zinc and muscle (eg sphincter) function - there's plenty of info but I have to sort through it. excess calcium interferes with zinc status...

would you send me a list of typical items you usually would need for a week of groceries? i can send feedback on that first.

Exelent read here can i get me some of that HCL w/pepsin stuff?
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Re: Still frustrated & confused

Postby jimmylegs » Wed Jul 10, 2013 12:51 pm

hey :) wellll.. I didn't read in fine detail but off the top of my head, that HCL part's a bit of a band aid 'controlling unruly acid' solution imho. you eat the right nutrients and hydrate and your LES should start behaving nicely. if you must have HCL please do consider it a short term thing while you work on getting the underlying systemic stuff on track. you'd probably be able to find HCL at a specialty health supplement store, or similar online vendor.
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Re: Still frustrated & confused

Postby Rick1866 » Wed Jul 10, 2013 7:02 pm

jimmylegs wrote:hey :) wellll.. I didn't read in fine detail but off the top of my head, that HCL part's a bit of a band aid 'controlling unruly acid' solution imho. you eat the right nutrients and hydrate and your LES should start behaving nicely. if you must have HCL please do consider it a short term thing while you work on getting the underlying systemic stuff on track. you'd probably be able to find HCL at a specialty health supplement store, or similar online vendor.


I read all (5) of the main articles and a few of the Q & A posts. low acid levels.bacteria & pyori's is what causes the heartburn according to the articales and Mr. Kresser said a healty diet should be the first course of action so yeah i probally should work on it with food first and go from there.

Tons of info in them and highly recomend anyone with heartburn issues to give it a read.
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Re: Still frustrated & confused

Postby jimmylegs » Wed Jul 10, 2013 7:21 pm

ok sounds good!

re working on diet, zinc would def be a major key to normalize gut bacteria and get rid of h pylori overgrowth.
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