Some Answers, More Questions

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Postby LoveActually » Sat Jun 27, 2009 7:48 pm

patientx,

My B12 number was 180.0. And it does state on the labs that normal range is 211-911 so you're right on. So is 180 considered severe?

I definitely went into "sleep mode" when she was telling me all the results. I had the Hubs taking notes and all the generic questions I had about the results were answered. But like I said, then I just went stupid. All the questions came to me hours later.
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Postby jimmylegs » Sat Jun 27, 2009 9:51 pm

i have said i would wait for info requests but have been checking, and this one is so stark.. get the b12 over 500 and if u like pm me for more details...
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Postby whyRwehere » Sun Jun 28, 2009 1:07 am

Actually, I wasn't suggesting she should be seen, but think it would be interesting to see her results, because I am thinking MS is probably not her problem, but you NEVER know. Especially since we don't know what MS is, exactly.
And if I were her, I would be wary of taking the "approved" medicine.
As for doing a test for ccsvi, she could just get a doppler done, which is TOTALLY non-invasive, she would just have to find someone who knew what they were doing, which isn't easy. I don't think Dr Dake would see her, as she has no firm say on what her illness is.
Lastly, I would not be surprised if it was something else, ie what about Hughes Syndrome? http://www.hughes-syndrome.org/symptoms.htm
Good Luck Love
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Postby Sharon » Sun Jun 28, 2009 7:30 am

LoveActually -

Scorpion wrote
Posted: Sun Jun 28, 2009 10:01 am Post subject:

--------------------------------------------------------------------------------

Please be careful about the CCSVI thread , Dr. Dake, Zamboni, etc. NONE of this has yet to be scientifically proven or accepted by the majority of people. Sorry but I think it is irresponsible to suggest a procedure that has NO proven effectiveness against MS. Until there is some proof please hold off on making that call to Dr. Dake. If you do have MS your neuro will discuss with you legitimate treatment choices that are presently offered. There are also clinical trials that look EXTREMELY promising(Campath,stem cells, new oral meds.etc.) that you may be interested in as well!!! Good luck.


I had to respond to this statment. Cheer suggested to you that you take a look at the CCSVI thread - yes, this is new diagnostic testing and new treatment. Look at the thread as part of your information on MS just as you would look at other regimens. Scorpion is correct that it has not been proven that CCSVI is the cause of MS, and it has not been proven that the treatment will cure MS. But, what has been proven is all MS patients tested by Dr. Zamboni had blocked jugulars and /or asygous vein which was causing blood reflux. Currently, there is a 1000 person study being done at Jacobs Neurological Institute in New York which will replicate the research of Dr. Zamboni. I seriously doubt the Institute would have undertaken such a large study unless they thought there was going to be a positive outcome to report. Anyway, Dr. Zamboni and others will be reporting at an International conference in Italy Sept 8th - many questions will be answered on CCSVI at that time. If you read the thread, you will find out that I am one of the TIMS members who went to Stanford University to be tested by Dr. Dake - I had a large blockage in my left jugular vein (99% blocked for a length of just over 3")and was treated by Dake inserting two stents. You will probably also read that I never took any of the approved CRAB drugs ----for me, they did not make sense to take. I guess my point is, you have to be pro-active and in control - you have to be searching for your own answers. TIMS is going to help you along but in the end please make an informed decision - based on good information and based on the fact that you know your own body better than anyone else.

As I have said to you before, good luck and keep up the good attitude.

Sharon

BTW - there is no treatment which has been proven to cure MS - the CRAB drugs have been proven to decrease the number of relapses, but not the disability progression. So, whether it is Campath, stem cells, Revimmune, CRABS, Vitamin D - it is not going to cure MS - it may help symptoms, it may tamp down an overactive immune system, but it is not going to cure it.
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Postby patientx » Sun Jun 28, 2009 8:10 am

LoveActually:

I'm not sure if it severe, but 180 is very low. I was at around 300, and the doctor commented that this was low. I think JL is right, that you want to be in the middle of the range, so B12 shots would seem appropriate here. You could also start taking oral B complex vitamins, in the meantime.

Not to say the low B12 is the cause of your problems, but it certainly isn't helping. As for your next appointment, you probably already know this by now, but you might want to write down your questions, so you have a list to take in with you. If nothing else, make a copy and give it to the doctor, so that she can respond later on, if she needs to.
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Re: Some Answers, More Questions

Postby NHE » Sun Jun 28, 2009 2:29 pm

Sharon wrote:...the CRAB drugs have been proven to decrease the number of relapses, but not the disability progression.

I don't believe that statement is entirely correct. The doctor's prescribing information for both Avonex and Tysabri show that both drugs decrease disability progression but just not by a great deal.

Here's the data for Avonex...

Image

...and here's the data for Tysabri.

Image

Moreover, Avonex has been shown to decrease brain atrophy during the second year of treatment vs placebo. This paper was from 2000. More recent papers have also shown a decrease in atrophy with Avonex.

Image

It should be noted that I'm not saying that these medications are the cure-all for MS. They aren't and they leave much to be desired. In contrast, I hope that treatment for CCSVI is eventually shown to have a much higher efficacy against disability progression.

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Postby Sharon » Sun Jun 28, 2009 7:50 pm

Thanks for posting the graphs

You wrote:
I don't believe that statement is entirely correct. The doctor's prescribing information for both Avonex and Tysabri show that both drugs decrease disability progression but just not by a great deal.


I really did not intend for Tysabri to be included as one of the CRAB drugs:
I wrote
BTW - there is no treatment which has been proven to cure MS - the CRAB drugs have been proven to decrease the number of relapses, but not the disability progression.


I have gone back and looked at some of the more current studies of Avonex and as the graphs show there is a decrease in disease progression. I believe one of the latest studies was for a period of ten years and it was based on that if you started Avonex therapy soon after the first relapse, disability progression was less for the ten year period. So, I stand corrected. I find all of this quite interesting because for me my first relapse was about 30-35 years ago. I did not have problems with walking until about nine years ago -- and I was not taking any medication in between that time period. My question would be - how many MS'rs in the Avonex study could have been in a similar situation?

Anyway, we should be happy that there are more treatment options for MS - at least now we have a choice.

Sharon
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Re: Some Answers, More Questions

Postby NHE » Sun Jun 28, 2009 10:27 pm

Sharon wrote:I find all of this quite interesting because for me my first relapse was about 30-35 years ago. I did not have problems with walking until about nine years ago -- and I was not taking any medication in between that time period. My question would be - how many MS'rs in the Avonex study could have been in a similar situation?


I went 8 years after my initial symptoms. I had numbness in my arm that went from my shoulder down to my thumb and forefinger. This stuck around for a month. I saw several doctors, including a neurologist, but was not diagnosed with anything and there was no mention of MS. After these first symptoms abated, I was fine for the next 8 years. I was an avid skier, rode my bicycle up to 20 miles, and graduated from college with honors (so I was under lots of stress) but I was otherwise fine. During that time, had I been diagnosed, I am convinced that had I been doing anything for my MS, from taking one of the ABCs to some herbal therapy or diet modification, that it would have been very reasonable for me to assume that my 8 year period free of MS symptoms was directly due to the treatment and I probably would have been a model poster child for the success of said treatment. However, that was not the case. I was untreated and those 8 years were simply the natural course of the relapse remitting nature of the disease. You went roughly 30 years and I went 8 years. There must be others out there that have a similar disease course as well. Unfortunately, the growing trend now is to get patients on some treatment as early as possible, even after a clinically isolated syndrome, so we may be hearing less and less of patients like ourselves. It's good for the pharmaceutical companies though. It certainly makes their drugs look good. Of course, the comparison is usually made to patients on placebo vs. the treatment but it does raise the following question. How many of the patients would have experienced a natural remission and gotten better for an extended time all on their own? In my opinion, in order to show true efficacy against MS, studies need to be both quite large and for an extended time period. There are many forces driving against this though, not the least of which are the pharmaceutical companies and their shareholders.

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Postby robbie » Mon Jun 29, 2009 6:15 am

How many of the patients would have experienced a natural remission and gotten better for an extended time all on their own?

so so true , really makes you wonder
Had ms for over 19 years now.
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Postby Sharon » Mon Jun 29, 2009 6:35 am

I have my own study going on within my family. My brother who is two years older (68 years of age) was diagnosed with MS about 35 years ago. CRAB drugs were not available at that time - he was on the Best Bet Diet, exercised and really did quite well. He started taking Beta Seron when it first came out which I think would be about 17-18 years ago and he continues to take it today. He suffers from extreme heat sensitivity and fatigue, cluster headaches. His EDSS is about a 5.0 - uses a cane quite a bit when outside - his disability has progressed in the long term. I have not taken the drugs, and my disability has progressed in the long term. And, yes I know it is only two people which does not prove a thing ----so, please no comments about that! But, for me I have had a better quality of life without medication than my brother who has been on medication and I wasn't spending a boat load of money on a drug prior to it being covered by insurance. Yep, someone could say that I rolled the dice ---whatever, I do not regret my decisions. I am not suggesting that anyone follow what I did either, okay? It is just my story.

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Postby robbie » Mon Jun 29, 2009 8:07 am

I took beta interferon for 8 years starting pretty much when it first came out, mostly out of fear of not trying this new wonder drug not really knowing of how poor the chances of it helping were. If I could do it again I would use the deductible money I spent on it for something I need now. I think when the newer drugs like Campath and Revimmune become more common and they soak all the money from the crab’s research will be in a better place. It bothers me when someone says their afraid of not being on one of the crabs because I think does it really matter?
Had ms for over 19 years now.
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Postby LoveActually » Mon Jun 29, 2009 4:12 pm

B-12 and Multi Vitamin Question...

Which do I choose? For the multi vitamin I was just thinking a Woman's One-a-Day but does anyone know of anything better? I'll be going to my doc to get B-12 shots but thought I would take the advice and get a Vitamin B Complex as well.

Now, do I get Vitamin B Complex, Vitamin B-12 or other B Vitamins? The Vitamin B-12 has many choices, 5000, 1500, 1000, 500. Less or more? I have no idea. Vitamin B Complex, 50, 75, 100, 125, 500.

The last time I took vitamins they were in the shape of the Flintstones. So any advice would definitely be helpful.
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Postby patientx » Mon Jun 29, 2009 6:18 pm

LoveActually:

Yabba -Dabba-Doo!


I will try to answer your questions, but I have to admit JimmyLegs is the resident vitamins expert. For the multi-vitamin, I think most are the same. You can compare labels, to see which might have stuff others are missing.

For the Vitamin B, I would probably go with B50 complex. With the B-12 tablets, you are only getting one form of vitamin B. With the B-complex, you're getting many other nutrients, like niacin, B6, riboflavin, etc. It's been a while since I've read up on this, so I don't remember what all these other forms do for you. But, for example, the niacin acts as a vasodialator, which can help if CCSVI holds true. And, I don't believe you can over-do the B-vitamins. Any extra are disposed of by your body, unlike, say vitamin D, which is stored in fat.

Also, you can see if the local CVS or whatever has sublingual B-12. Then, you can take this along with a B-50 once a day. This will help get your vitamin B levels up in a hurry.

Hope this helps some.
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Postby patientx » Mon Jun 29, 2009 7:30 pm

I should add, as always, coordinate what you're doing with your doctor. For instance, once you start the B12 shots, there's no reason to take the sublingual B12.
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Postby LoveActually » Tue Jun 30, 2009 12:00 am

LOL! Thanks Patientx!

When I read the "Yabba -Dabba-Doo!" part, I started singing the song. Now I can't get the damn thing out of my head. :lol:
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