Need to vent!!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby JoyIsMyStrength » Wed Feb 10, 2010 3:50 pm

HappyPoet I want your phone # for next time anybody messes with me. 8)

Johnson I just looked up your suggestion for pain relief and can't believe how inexpensive it is. I can't speak for Michael of course but I will certainly give it a try. Thanks! ... 00-Tablets

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Postby jimmylegs » Wed Feb 10, 2010 3:56 pm

awesome database one of my faves

you select the scientific name and then enter plant name ie hypericum perforatum

then you select the radial button 'select chemical activities after chemicals'

then you submit and it spits out something like this:

Chemicals and their Biological Activities in: Hypericum perforatum L. (Clusiaceae) -- Common St. Johnswort, Goatweed, Hypericum, Klamath Weed, St. John's-wort



ASCORBIC-ACID Plant 1,300 ppm; DUKE1992A Seed 395 ppm; DUKE1992A


CADINENE Essential Oil: DUKE1992A

CADMIUM Leaf 1 - 7 ppm DUKE1992A Plant 1 - 5 ppm DUKE1992A Root 1 - 3 ppm DUKE1992A

CAROTENE Seed 165 ppm; DUKE1992A


... D thru P...




RUTIN Plant: DUKE1992A




TANNINS Flower 162,000 ppm; DUKE1992A Leaf 124,000 ppm; DUKE1992A Plant 51,400 - 92,700 ppm DUKE1992A Seed 121,000 ppm; DUKE1992A Stem 38,000 ppm; DUKE1992A



11B-HSD-Inhibitor CPT59:62
5-Alpha-Reductase-Inhibitor X10830511
5-HT-Inhibitor X12584792
5-Lipoxygenase-Inhibitor IC50 (uM)=4
Abortifacient DUKE1992B
Acaricide LC100=8 uM JAF50:4586
ACE-Inhibitor 100 ug/ml K26575 IC50=0.67 mM/ K25469 ID50=300 ug/ml rat (24 hr.) T15015

... A thru U...

Vasodilator FT73:557 NP6:1 DUKE1992B
Vasopressor JE26:76 DUKE1992B
VEGF-Inhibitor X16467866 X16737615
Vulnerary PAM DUKE1992B
Xanthine-Oxidase-Inhibitor 3.1 uM PM69:1125 IC50=10.6 ug/ml X12591129 IC50=>0.4 ug/ml CPB38:1772 IC50=>40 PM69:1125

don't know about you guys but for me that is just fun stuff. lucky since it's for my thesis LOL
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Postby fogdweller » Wed Feb 10, 2010 4:07 pm

Kacey, I feel for your frustration. Hang in there and get a good pain specialist that can help.

I have had MS for 30+ years (PPMS) and now have significant neuropathic pain. I have no illusions that relieving CCSVI will elliminate the pain at all, it just hopefully will not get worse.

However, that being said, if we can stop the disease, all the MS research dollars and huge pharma dollars will focus on remyelination, nerve regrowth, brain repar and the like. There is real hope in the near future from these.
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Postby Kacey » Wed Feb 10, 2010 4:34 pm

Can I just say how much I love all of you guys? Seriously, thanks so much for the support!

1. When I first came on TIMS and read all of the information available, I knew NOT to expect a miracle, just some relief from fatigue and cog-fog, which has lifted significantly.
We do notice that while Michael does have neuro pain in his legs, it is not as crushing and severe as pre-procedure. He is able to ambulate fairly well, but is sore. Previously, he would have been holed up in a room or worse, admitted to the hospital on horrible IV meds. At least right now he is able to get by with some short term pain meds. Still, his attitude remains pretty positive, when before, he would be feeling alone, desperate and wallowing in misery. So, I am grateful for the fact that we were "the lucky ones" to have had this..

2. Pain Management- to us was a load of garbage. The pain mgmt guy we saw declared that Michael's pain was NOT from MS, but was from fibromyalgia...and Michael underwent trigger point injections, pain medications, lidocaine drips, etc...with not one iota of relief. (Coming from a medical office that refers to pain mgmt, I have noticed that this particular doc diagnoses EVERY SINGLE PATIENT with fibromyalgia and lays out his plan of trigger point injections, lidocaine drips and possible spinal opinion (and we all know what opinions are like, everyone has them) is that pain management is a racket.

3.Johnson, thank you so much for that advice! I will certainly check into that!! I believe wholeheartedly in homeopathy, I have a few friends who practice just to get my Western minded hubby to agree. I think he will try anything at this point, so I will be surfing the net tonight to order this. Thanks!

4. Great idea about reporting that jerk of a neuro to the insurance company. I did think of it, but thought that we would be more received as "whiners". Again, working in medicine, I know how Docs can spin things...

5. Again, I thank you all for the support. I'm thinking that this episode right now is a result from Michael's newfound energy and doing too much. But this "diet" version of the attacks is certainly more manageable than the ones he used to deal doubt. I hope and I truly believe that this procedure will bring about the end to MS, at some point. There will be much to learn from this and alot will come from it as well.

Be Well!
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Postby JoyIsMyStrength » Wed Feb 10, 2010 4:51 pm


I too believe in homeopathy and wholeheartedly agree with Johnson that it's worth a try but if all else fails please also consider Neurontin (Gabapentin). The reason I stress this is because it specifically targets nerve pain, it's relatively mild and considered safe, and it should be a cinch to get an RX from your neuro. Plus the generic form is affordable. I was in serious agony -- crying from sharp, shooting pain that NOTHING helped -- and Neurontin fixed me right up. Helps relieve spasticity and restless legs, too.

Hope I'm not being obnoxious. I don't have stock in this drug, LOL! I realize what works for one person doesn't necessarily work for the next. I just care that's all. :)

Peace out,
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Postby Johnson » Wed Feb 10, 2010 5:09 pm

jimmylegs - that is cool!, and I am not writing a thesis. Perhaps that is why a lot of the result is Lithuanian to me.

Kacey - just be sure to follow the homeopathy protocol - nothing in the mouth 30 minutes before or after the remedy (no toothpaste, smoking, water - anything) and avoid strong smells (cleansers, perfumes, etc.).

30c is a good dose take 3 every 4 hours, as indicated. Don't use long-term without a break, as that can "prove' the remedy (it won't work anymore).

Best of luck.
My name is not really Johnson. MSed up since 1993
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Postby annad » Wed Feb 10, 2010 5:30 pm

Kacey, was just thinking about you guys today and then this went up! I can't believe a doctor would treat your husband that way!!!
We care. Stay strong.
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Postby berriesarenice » Wed Feb 10, 2010 5:36 pm

Johnson wrote:jimmylegs - that is cool!, and I am not writing a thesis. Perhaps that is why a lot of the result is Lithuanian to me.

Yes, that is just how I feel...It's super-cool, and I'm super-not-smart-enough

Off to sign up for jimmy's class
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Postby Kacey » Wed Feb 10, 2010 7:01 pm

he does take Neurontin, 600mg.......not helping so much...
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Postby JoyIsMyStrength » Wed Feb 10, 2010 7:08 pm

OK Kacey sorry to hear that but it was worth a try. Thanks for letting me know.
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Reply to Kacey

Postby 011201104 » Wed Feb 10, 2010 7:44 pm

Hey Kacey,
I would have been mad too.
Last edited by 011201104 on Mon Feb 15, 2010 10:12 pm, edited 1 time in total.
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Postby jilthepil » Wed Feb 10, 2010 8:06 pm

Kacey -

Sorry to hear about the leg pain. Leg pain is my biggest symptom with my MS and has been since day #1. It is a miserable pain that I cannot explain to anyone. I have had neurologists tell me the same thing "that pain is not a component of MS". I am throwing the BS Flag. It is my biggest symptom PERIOD.

Lastly - I despite physicians anymore. I worked orthopedics for years and now work oncology. Most doctors have egos bigger than my house. Their smart - your dumb. Their big - your little.

My neurologist just recently got snarky with me over discussing CCSVI with him and to top that - he has been talking shit about me behind my back to my other physicians and it got back to me! He clearly told the surgeon who was getting ready to operate on my eye that I was "Difficult and that I liked to explore alternative methods of treatment and that I had often been noncompliant". She then (the eye surgeon) referred me out to someone else.

The truth about me is this - I am polite and kind. My neuro doesn't like me because I have medical sense and can talk with him in a language that most patients cannot. He likes patients who walk in and act like they are at his mercy.

Anyway - I think hubby might need to find a new neurologist. I think I do too.

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Postby Kacey » Wed Feb 10, 2010 8:44 pm


Sorry, that probably sounds so unintelligent, but that's what came to mind!That, and a side of ' MMMMHMMMMMM!!!!!!!"
*visualize neck roll here*
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Postby TFau » Wed Feb 10, 2010 8:52 pm

Kacey wrote:Word!

Sorry, that probably sounds so unintelligent, but that's what came to mind!That, and a side of ' MMMMHMMMMMM!!!!!!!"
*visualize neck roll here*

You're hilarious Kacey. It appears that this is a great place to vent!
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Postby HappyPoet » Wed Feb 10, 2010 9:09 pm


I'm soooo sorry you guys didn't have good luck with pain management doctors. I've been hearing more and more that more and more of them don't do anything but procedures. Bad doctors. Bad. They're lucky I've never been in one of their offices!

The area of homeopathy is definitely something I'm going to look into, especially because I'm reaching the max on my prescription pain control meds. I'm going to investigate hypericum perforatum.

I hope you know I'm praying for Michael and that all his symptoms find relief from his Liberation Procedure... and of course, I'm also praying that it helps stop his progression.

You're both so courageous in so many ways.

[Edited for typo]
Last edited by HappyPoet on Wed Feb 10, 2010 11:19 pm, edited 1 time in total.
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