well, here I go...

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lyndacarol
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Re: well, here I go...

Post by lyndacarol » Thu Oct 02, 2014 8:51 am

specialk1180 wrote:lyndacarol, i may have misled you in one area... to clarify: so far, i've only completed 1 round of steroids. i am just considering doing a 2nd round, since i have not felt relief after round 1 which finished about a month ago.
No, no… I understood your statement perfectly.

When I wrote,
I "had zero change in symptoms after steroids" on two different occasions. Steroids are powerful drugs, which have lots of unintended consequences; for instance, high dose/long-term usage has an established connection to developing diabetes.
I was speaking of my own experience. Like you, I took steroids and had NO change in symptoms afterwards. Unlike you, I tried steroids on two different occasions and saw no change in symptoms EITHER time.

I do not intend to use steroids again because of the potentially dangerous side effects.

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Re: well, here I go...

Post by specialk1180 » Thu Oct 02, 2014 9:06 am

everyone, i can't thank you enough for your support. it means tons to me, really. i am amazed by all of the knowledge here. i appreciate your time and responses. i'm already in contact with my neuro to see if i can get some of these things that you've recommended, hopefully to get them resolved in short order. wish me luck. and, i can't promise i won't come back here with more questions. ;)
fingers crossed, and deep breaths indeed.
peace to you all,
~ k

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Re: well, here I go...

Post by specialk1180 » Thu Oct 02, 2014 10:29 am

lyndacarol, sorry i misunderstood you! thanks for clarifying. and i'm sorry to hear the treatment didn't work for you either. :( thank you for sharing your experience.

i've just gotten off the line with my neuro, and regarding how to fix my continuation of symptoms (buzzing, mostly), they want to start me on gabapentin (instead of more steroids).
i'm not sure whether i like this decision or not yet... no more steroids sounds good, but i'm only starting to read about gabapentin. i'm already on a low dose zonegran (another anticonvulsant) for headaches, so i wonder what adding another anticonvulsant might bring. i'm also already an overweight klutz, so i'm not sure gabapentin is going to improve things for me aside from taking away my tingle. sounds like a lot of naps, from what i've read so far. sigh.... and the journey continues...

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lyndacarol
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Re: well, here I go...

Post by lyndacarol » Thu Oct 02, 2014 1:33 pm

specialk1180 wrote:i've just gotten off the line with my neuro, and regarding how to fix my continuation of symptoms (buzzing, mostly), they want to start me on gabapentin (instead of more steroids).
i'm not sure whether i like this decision or not yet... no more steroids sounds good, but i'm only starting to read about gabapentin. i'm already on a low dose zonegran (another anticonvulsant) for headaches, so i wonder what adding another anticonvulsant might bring. i'm also already an overweight klutz, so i'm not sure gabapentin is going to improve things for me aside from taking away my tingle. sounds like a lot of naps, from what i've read so far. sigh.... and the journey continues...
In your first post you mentioned symptoms of depression, fatigue, tingling feet (peripheral neuropathy), neurological lesions – all of these are nonspecific (i.e., common to many conditions) symptoms which are consistent with a B12 deficiency.

Now you mention headaches and being overweight and taking anticonvulsants; in my opinion, these also point to B12.
Headaches/migraines are also symptoms possibly due to a B12 deficiency.
Anticonvulsant drugs can deplete B12 stores.

On page 214 in the book, Could It Be B12?:
A number of prescription drugs, too, can deplete B12 stores, particularly in older patients. Among the most common are proton pump inhibitors, metformin (Glucophage), H-2 blockers, antacids, anticonvulsants, some antibiotics, and colchicine.… In young and middle-aged women, birth control pills are a common culprit. (See Appendix A for a more complete list.)
A B12 deficiency can cause enlargement of the liver (hepatomegaly) and spleen (splenomegaly) – are you truly overweight, or simply have enlargement of these organs? – and cause imbalances in the stomach, liver, pancreas, and other organs. Pancreatic enzymes are necessary for B12 absorption; a decrease in these pancreatic proteases can further worsen a B12 deficiency. If the effect on the pancreas is to increase insulin secretion, this could cause weight gain.

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Re: well, here I go...

Post by specialk1180 » Thu Oct 02, 2014 2:42 pm

interesting! i can't wait for this book to be delivered to me tomorrow. and to see if/when i can get these add'l b-12 tests done.

i just started the zonegran (rx from the neurologist) in august, so i know that's not the cause of my issues. i have been having headache issues for 1-2 years now. had migraines periodically in my early 20's, and now they started back up again within the last year (i'm almost 34 now).

i have been overweight to varying degrees my whole life. i have a condition called pcos (dx 7/2009) that comes with insulin resistance - ie too much insulin flowing - so my eating habits, weight gain, and efforts at weight loss are different than that of a 'normal person'. thats when i was first told my b12 was low, but no one said anything about these dangerous cns impacts. endocrinologist put me on metformin for the insulin resistance back at my pcos dx, but i stopped taking it after a month or two because i did not tolerate it well at all; i was just really ill.
Last edited by specialk1180 on Mon Jul 22, 2019 4:42 pm, edited 1 time in total.

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lyndacarol
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Re: well, here I go...

Post by lyndacarol » Thu Oct 02, 2014 4:13 pm

specialk1180 wrote:interesting! i can't wait for this book to be delivered to me tomorrow. and to see if/when i can get these add'l b-12 tests done.

i just started the zonegran (rx from the neurologist) in august, so i know that's not the cause of my issues. i have been having headache issues for 1-2 years now. had migraines periodically in my early 20's, and now they started back up again within the last year (i'm almost 34 now).

i have been overweight to varying degrees my whole life. i'm 5'5" and 215 now. 185 is the best weight i've been able to get to (with diet, exercise, and phentermine), but i've also been up as high as 290. i have a condition called pcos (dx 7/2009) that comes with insulin resistance - ie too much insulin flowing - so my eating habits, weight gain, and efforts at weight loss are different than that of a 'normal person'. thats when i was first told my b12 was low, but no one said anything about these dangerous cns impacts. endocrinologist put me on metformin for the insulin resistance back at my pcos dx (when i was 290#), but i stopped taking it after a month or two because i did not tolerate it well at all; i was just really ill. i haven't been on any metformin or glumetza since that time, and have instead just tried to watch my diet more closely. i'm the heaviest now i have been since then, thanks to the lack of exercise i've been advised of by the neuro due to my existing symptoms. catch 22!
I post my thoughts here openly with the idea that this discussion might be of interest to someone else in a similar situation, but if you would rather not put your personal details out in the public forum, there is the option of communicating by private message (clicking on "new messages" in the upper left-hand corner will get you there).

If B12 supplementation will make B12 testing unreliable, there is the option (if you have a cooperative doctor who will write the order) of a therapeutic trial of methyl B12 injections. Vitamin B12 is water-soluble, non-toxic, and inexpensive – any excess that your body does not need in the cells or to be stored in the liver will be flushed out in urine. There are no negative side effects to giving it a try (If you are willing to do Copaxone injections, the idea of injections for B12 should be acceptable.).

IF a B12 deficiency has caused an imbalance in your pancreas and production of excess insulin (which is required in order to put on weight), correcting the deficiency might improve the weight problem and the polycystic ovarian syndrome (PCOS) as well as your current neurological symptoms.

Any person, at any age, can develop a B12 deficiency. If you have a deficiency, it may have been "brewing" for a long time; if the complicated metabolic pathway of B12 is interrupted anywhere on its way to the cells, the liver has large stores and can supply B12 for as long as seven years (at which time it becomes depleted and symptoms of deficiency begin to appear).

I think you will find the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally Pacholok, RN, BSN, and her husband Jeffrey Stuart, D.O., VERY interesting! Enjoy!

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Re: well, here I go...

Post by specialk1180 » Thu Oct 02, 2014 4:28 pm

thanks for the note on pm. i admit i'm being a bit more open than i normally would, but it is deliberate, also in the hopes that maybe it will help someone else :) honestly, in all the sites/threads/forums i've read so far, no one i've come across has admitted to being overweight. i think it's just not something people like to talk about, but i think it's certainly an impact/consideration in these conversations!

i'm definitely going to ask about the b-12 injections. sounds like a potentially 'quick fix' and something well worth looking into. sure, it might not fix everything/ i might still end up actually having ms, but hey, i'll have better b-12 levels!

sounds like i've got a nice weekend of reading ahead of me. :)

warm regards ~

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Re: well, here I go...

Post by Youarethecure » Thu Oct 02, 2014 8:05 pm

Trust me specialk, you are handling this very well. I personally dove into a deep depression when I realized I was having a relapse last year.... this time exactly last year haha. I had optic neuritis at age 19 then last year that happened to my other eye with a lot of other symptoms.

I wasnt even talking to family, friends, co workers. I was in complete denial and a serious depression...... You are handling this wayyy better than I did lol.

Once you wrap your head around all this you will be fine. I am not even a year into being diagnosed my self.

Best wishes,

Chris

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Re: well, here I go...

Post by vesta » Fri Oct 03, 2014 2:54 am

Greetings:
I would consider that many of your symptoms are the result of toxicity build-up. For instance, if you ingest Aspartame, it is a neurotoxin and has been known to trigger "MS" symptoms. Maybe the 10 day detox diet would allow you to understand what is happening in your body. (The first few days can lead to very unpleasant withdrawal symptoms.) i can't see how adding another toxic drug will deal with toxicity. The Vit B12 issue is part of optimal nutrition and supplements, but I believe you'll need alot more than that. I know it's difficult to contemplate a major diet change. But after 10 days (that's not so long), you'll find the changes worth continuing. People need to have confidence in their own ability to take charge and heal. Wishing you the best. Vesta

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Re: well, here I go...

Post by specialk1180 » Fri Oct 03, 2014 9:46 am

vesta, i agree that toxic+toxic = no good. that said, you may be surprised to hear that i already eat pretty healthy, and have for a few solid years now. (before that time, though, i admit i ate a lot of garbage!) i have avoided aspartame or other artificial sweeteners for about 5 years. i eat mostly organic foods. i do still eat wheat, dairy, and meat, but not every day, and i keep it in moderation. i realize i will need to make some changes to my diet (more veggies for sure!), which is why i'm visiting a dietitian next week. wish me luck!

chris, thank you very much for your kind words of support, and for sharing your experience. glad to hear it sounds i'm keeping my lid on ok lol. i am sorry you're in this rocky boat too, but, glad that you've been able to pull through that darker time, to come here and give help and inspiration to those needing it! :)

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