Would you undergo steroid treatment if you were unsure?

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Would you undergo steroid treatment if you were unsure?

Postby shinyredsparkles » Sat Apr 09, 2011 6:30 am

Hi all!

I posted here a long time ago and then promptly ran away and buried my head in the sand when it came to talk of MS :)

I had optic neuritis 2 years ago now. I have several brain lesions (spine is clear), however until recently my neuro has been confident that I don't yet have MS. I've been having regular MRIs since the ON and no new lesions have developed.

Recently I've been getting pins and needles regularly (although never for more than 10 minutes at a time). I've also started randomly dropping things I'm holding in my right hand - again, nothing too bad, as soon as it happens I can pick up whatever it was again and I'm fine.

Due to the pins & needles & clumsiness, my neuro is now mentioning steroid treatment. I don't know what sort yet (appt is in a month) - but without a definitive diagnosis I'm reluctant to take the steroids. I just wanted to ask you guys (as you seem to be much more knowledgeable than all my doctors!) - if you were ever unsure in the beginning, and have you ever turned down a treatment & regretted it later? If my MRI is unchanged I'm just not sure where that leaves me (as per usual)!

Thanks xxx
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Postby Lyon » Sat Apr 09, 2011 7:25 am

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Last edited by Lyon on Wed Jun 22, 2011 5:56 pm, edited 1 time in total.
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Postby jimmylegs » Sat Apr 09, 2011 7:30 am

hi shiny i did not take the recommended drugs and have not yet regretted it. however i don't feel like a 'standard' ms patient and the drugs they were offering me were not steroids but crabs. in my case i had to make a decision about taking drugs or changing my diet for better nutrition. i chose better nutrition even though it meant i had to stop being a vegan.
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Postby shinyredsparkles » Sat Apr 09, 2011 9:42 pm

Hey jimmylegs! I was kind of hoping you'd reply, you gave me such great advice last time :)
Thank you also Lyon for taking the time to reply. I guess I'd just rather not introduce drugs into my system unless it's really necessary (I don't even like taking panadol unless it's absolutely necessary!). So it's true then that whether I have the steroids now or not it won't alter the outcome of any future diagnosis? If so then I'll skip them for now... I'm not suffering any discomfort, only annoying stuff so I'll be ok.

Out of interest... Has anyone suffered any of the "clumsiness"? I didn't know it was an MS symptom till I mentioned it to my neuro....
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Postby jimmylegs » Sun Apr 10, 2011 7:49 am

hey shiny :D no problem!

yep i had what i think you could describe as SEVERE clumsiness. part of my original sensory loss in 2006 was my position sense. i had to control movements from visual and vibration feedback. i would drop anything i wasn't looking at to make sure i was still holding it. i could not tell how hard i was gripping objects. i couldn't just reach for objects - my hand and arm would take this zig zag sight-corrected course toward any object i wanted to pick up. needless to say i was useless at writing, typing, playing guitar, etc.

three days into my modified, oral version of the klenner protocol there was major improvement - a few seconds of pins and needles in my hands and i felt my position sense return. i literally ran to the keyboard to make sure, and yes i could type normally again, ie not having to look at my hands and jab a pointer finger at one letter at a time!

originally i thought it was all the b vitamins that did it but later i realized it might have been the high doses of vitamin e.

Vitamin E Deficiency and Neurologic Disease in Adults with Cystic Fibrosis
http://www.annals.org/content/107/1/51.abstract
"severe vitamin E deficiency and neurologic disease. The most prominent clinical features were abnormal eye movements, diminished reflexes, decreased vibratory and position sense, ataxia, and muscle weakness"

Spinocerebellar degeneration associated with a selective defect of vitamin E absorption
http://www.nejm.org/doi/pdf/10.1056/NEJM198507043130107
"The neurologic disorder observed in this patient was very similar to that previously described in patients with vitamin E deficiency associated with chronic fat malabsorption.1 The most striking features were areflexia and a marked disturbance of proprioception."

http://neuromuscular.wustl.edu/nother/vitamin.htm#e
vitamin e deficiency syndrome:
Clinical
Polyneuropathy
Sensory loss
Large fiber modalities
Sensory ataxia
Tendon reflexes: Absent
Electrodiagnostic
Sensory potentials: Usually small; May be normal
Abnormal somatosensory evoked potentials
...
CNS
Ophthalmoplegia
Spinal
Posterior column sensory loss
Extensor plantar responses
Systemic: A-β-lipoproteinemia
Retinitis pigmentosa
Acanthocytosis


i never got a baseline vitamin e test. i got one later on, but it was after i was much better, and the result was fine.

but, if i look back at the kind of vegan i was and whether there was much vitamin e in my diet, and whether i would be able to absorb it, the answer is no. i used to avoid nuts and seeds due to the fat (stupid, in hindsight my diet was actually fat-deficient), i never ate fortified cereals (still don't) and i didn't eat dark leafy greens in anything like the amounts needed.

nowadays large sides of spinach, chard or kale are included in meals almost daily. i cook with nuts and seeds, or sprinkle them on salads. i take 400IU each day of mixed tocopherol and tocotrienol vitamin E8 complex.

for non-vegans:
http://ods.od.nih.gov/factsheets/vitamine/
Vitamin E Intakes and Status
Three national surveys—the 2001-2002 NHANES [9], NHANES III (1988-1994) [9], and the Continuing Survey of Food Intakes by Individuals (1994-1996) [10]—have found that the diets of most Americans provide less than the RDA levels of vitamin E. These intake estimates might be low, however, because the amounts and types of fat added during cooking are often unknown and not accounted for [6].

The FNB suggests that mean intakes of vitamin E among healthy adults are probably higher than the RDA but cautions that low-fat diets might provide insufficient amounts unless people make their food choices carefully by, for example, increasing their intakes of nuts, seeds, fruits, and vegetables [6,9].


your clumsiness may or may not have links to vitamin e, shiny, but if any of the above makes sense, then you have some ideas to go forward with. :)
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Postby jimmylegs » Sun Apr 10, 2011 10:23 am

shiny i went back and read our old convo from feb 2010 and i'm wondering if you have those test results in a file - were you able to get your own copy of the levels including units?
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Postby Loriyas » Sun Apr 10, 2011 11:44 am

This is just my opinion so take it for what it is worth:

I would do the 5 day solumedrol. It sounds like you have enough symptoms to make it worth trying. If you see improvement you will know that it is effective. If you have inflammation the solumedrol will reduce it and thereby hopefully reduce the symptoms. You will never know unless you give it a try.
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Postby jimmylegs » Sun Apr 10, 2011 12:26 pm

lots of anti-inflammatory foods and nutrients out there too!

boiled swiss chard greens, baked sweet potato, a salmon filet.. all are excellent choices.

vit e (low in ms) is anti-inflammatory.. as is vit d3 (low in ms), vit C (low in ms), b12 (low in ms), and zinc (low in ms).

hmm i feel a trip to the grocery store coming on :)
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Postby shinyredsparkles » Mon Apr 11, 2011 2:04 am

Nope never got to see my results :(
I'll ask again when I go back next month - my neuro left for a while (maternity leave!) but she's back for my next appt so fingers crossed I can get a copy. I feel odd asking her for some stupid reason.
Ive been having regular acupuncture sessions (yeah I'm a bit of a hippy!) which I've found really beneficial. Interestingly the acupuncturist said I had a problem with blood flow without knowing any of my history...
I think a trip to the shop is definitely on the cards :) I've just checked all the links in your signature, do you know of a site that lists the MS dietary stuff in stupid people (ie me) terms?
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Postby jimmylegs » Mon Apr 11, 2011 6:06 am

i'll get started on that shiny ;P hehehe. i'm sure i can find you a list somewhere in my previous posts. when i get home from work today i'll find a link for you.
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Postby shinyredsparkles » Wed Apr 13, 2011 6:09 am

Only if it's not too much trouble! If it is no stress I'll just keep googling... Gives me something to do at work lol :)
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Postby jimmylegs » Wed Apr 13, 2011 7:16 am

here's a post about bloodwork i did for mirry last year:

http://www.thisisms.com/ftopicp-128490.html#128490

my current supplement regimen is this:

multivitamin/multimineral/extras
'progressive' brand multi for active women (intended amount = 3 per day, i vary how many i take depending on activity level)

additional vitamins:
vit A/retinol 10,000IU every other day
vit B50 complex every day
vit C 1000mg every day (sometimes 2/d)
vit D3 10,000 IU ideally twice a week
vit E8 complex 400 IU every day

additional minerals:
calcium amino acid chelate 1000mg every day
magnesium glycinate 833mg before food (delivers 150mg elemental mag), every day
selenium 200mcg every day
zinc 50mg every day (includes 2mg copper)
ferrous gluconate 300mg (delivers 37.5 mg elemental iron) 3 days/month

fatty acids:
fish oil extra strength 1000mg every day
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Postby jimmylegs » Wed Apr 13, 2011 7:40 am

and as for dietary stuff, i am on board with selected aspects of the various approaches out there.

my diet is like this:

1) eat whole unprocessed foods, any kind unless you are full-on allergic (sensitivities can be corrected), reasonable portions
2) choose organic whenever possible/feasible
3) no more than say 3 to 5 ingredients in a processed food - unless you're talking sprouted multi-grain bread. (for instance, i will buy plain old original triscuits if i want crackers. or the low sodium ones. not the plain low fat ones).
4) avoid artificial flavours
5) ensure appropriate fats from nuts/seeds/fish
6) ensure adequate protein energy
7) eat a variety of in season, brightly coloured produce
8 ) boost anti-inflammatory foods - eat dark leafy greens like chard, spinach, and kale daily
9) make sure you eat a few things raw each day
10) eat sustainably caught, cold water, oily, low-on-the-food chain fish often

AND, stay properly hydrated (which i suck at, but i have to to keep my blood pressure up)

my most regular cheats would be vanilla yoghurt, dill pickles, ketchup (at least it's organic), ginger ale, and sometimes i buy a granola bar from the gift shop at my work.

hope that is better than my links :S lol!
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Steroid withdrawal

Postby thinmint » Fri Apr 15, 2011 12:48 am

I was on oral prednisone for about six years and did solumederol infusions four days a month for eight years, so I have some experience with this subject. Steroids can give you strength and mask a great deal of pain, especially in the beginning. At first I could get at least a good week's worth of energy after an infusion, but in the end it was hit or miss. The side effects are pretty challenging. There is a lot of anxiety, aggression, difficulty in sleeping with any kind of normalcy, "moon face" and weight gain, loss in bone mass (which raises the difficulty of breakage and with MS one's balance is usually effected), and my fingernails all started to get this weird calcification to name a few. Steroids are as difficult as an opiate to get off of, and it took me about a year and a half to wean off of oral prednisone (and it was hellish to go through). I stopped the solumederal infusions in November of last year and have finally started to feel better within the last month. That being said, I would advise you to really think before allowing this very addictive and life altering substance into your system. Especially if you are not having serious disability at this time. If you do it start small, and never take it every day. It is much less harmful if you do it every other day or in weaning doses (just so long as it is off and then on, not everyday consecutively). Good luck!
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Re: Would you undergo steroid treatment if you were unsure?

Postby NHE » Fri Apr 15, 2011 4:08 am

Would you undergo steroid treatment if you were unsure?


That's a good question. Unfortunately, I don't have a clear answer. Corticosteroids, such as prednisone, reduce inflammation by inducing apoptosis, cell death, in white blood cells. I've had IV prednisone twice. The first time was when I was diagnosed and it helped restore my vision from a bout of optic neuritis. This course was followed with an oral taper. The only side effect I can recall was a racing mind where it was difficult to keep my mouth in park while my brain raced away. My second course of IV prednisone was not followed by an tapering oral dose regimen. The main side effect I had that time was an opportunistic infection in one of the cuticles of my fingernail for which I had to go on antibiotics. In short, prednisone reduces inflammation by killing off white blood cells and suppresses the immune system. There are side effects associated with long term use as discussed in prior posts. However, if it can be shown through other tests that you are in a period of high chronic inflammation, then it might be an interesting experiment. In the end, I have read that corticosteroid treatment reduces the duration of a relapse, but does not appear to effect the long term progression of MS. Lastly, I should note that there are other anti-inflammatory options available to you. Jimmylegs has some great suggestions for an anti-inflammatory diet and there has been much discussion of anti-inflammatory supplements on the Natural Approach forum.

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