Newly Diagnosed!

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Newly Diagnosed!

Postby chele83 » Sun Jan 17, 2010 10:17 pm

Hello,
Well this whole thing is so new to me and I'm so confused on so many things. I'm so thankful my husband found this site. It was of course devastating to hear that I have MS and that there is no cure for it, however looking on the other side of that it could be worse and God is not going to put anything on my shoulders that I can not handle. I think the scariest part right now about it is that I feel like I do not know a whole lot and either do the professionals as well. (At least where I live) I'm in the process of trying to pick out the medicine that I'm going to start taking. I have the rr ms.
My Dr also does research projects for MS medicines and wants me to participate. Right now this whole thing is so new to me I feel like I need to adjust to it first. I'm really not leaning toward the research right now. If anyone has any suggests or comments or information with that please let me know.
I have so many questions , I feel like I have so much to learn and very eager to learn it.
I feel like I'm holding up pretty well, I have definately had my moments where I break down and have a crying session. I am young and not going to let this get me down. I ready to do what ever I have to, to fight it.
Thank you for reading my post and for any information you have.

Chele
~Dx'd December 22nd 2009~<br /><strong>Why stress over things that can be changed......Change them! <br />Why stress over things that can't be changed.....You can't!<br /></strong>
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Postby jimmylegs » Mon Jan 18, 2010 6:04 am

welcome chele, you are at that point i was at 4 years ago almost to the day. it's a scary time.

i too was offered the chance to participate in a study and apply for government funding to pay for rebif... but i declined. its really a choice you need to make for yourself.

i had personal reasons to believe nutrition or lack of it was a major contributor to my illness, and i still have a number of problems with the dx process. (my doctors disagreed with me that 15 years of strict veganism might have something to do with my spinal cord degeneration).

i did a lot of reading and i mean 8 hours a day for months and months, before i felt like i could properly look up and look around me at the rest of life again.

one way to perhaps filter your reading is to search for other seemingly unrelated health issues you might have had in the past, or that run in your family, and search for the possible links between those issues and MS. that way you can start to understand linkages and maybe see a way forward for yourself individually.

if you have not heard about CCSVI, try reading some of that forum. it's the big new thing in MS. i tried to look into getting tested but the canadian W5 piece on liberation treatment aired before i got around to it and now that option is going to have to take a back seat for a while i guess!

personally my main thing for combating ms has been nutrition. there are a lot of protocols out there and i agree with some ideas and not with others. so i have a sort of personalized approach cobbled together from a few thinkers on nutrition and ms, past and present.

happy reading, let us know what you find out :) if you throw out some of the specific things you deal with, i'm sure myself and others who have the benefit of a few years' reading under our belts can point you in the direction of useful info!

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Postby tzootsi » Mon Jan 18, 2010 7:57 am

Hi Chele,

Getting dx'd with MS at this point in time is not nearly as grim as it was just a few years ago. There are so many new things coming into play in the next few years. I totally agree with Jimmylegs - do lots of research, and consider dietary and nutritional changes. Here is a 3 pronged plan of attack that can have a big impact on keeping your ms under control:
- Diet - Get a copy of Ann Sawyer's 'MS Recovery Diet' - a fabulous book.
Go out to Ashton Embry's 'direct-ms' website for a ton of info on diet
supplements and CCSVI.
- LDN - Do a google on LDN. This is a mild, easy to take prescription drug
that is usually very helpful for folks with ms. Unfortunately, it's not part of
mainstream medicine, so it's hard to get a prescription. Skip's Pharmacy
in Boca Ratan Florida will help you find a doctor that works with LDN.
- CCSVI - This is without a doubt the most promising therapy yet for MS.
Read up on it, and try and find a doctor who will work with you on this.

If your doctor wants to start yo on a trial of a new drug, find out what it is, and do some of your own research on it. Then you can make a more informed decision on what you want to do.
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Postby chele83 » Mon Jan 18, 2010 9:26 am

Hi,
Thank you guys so much for the information and for the words of encouragement. I have tried researching me and my husband has tried and we have found some good info however I have already found more useful info here and I have only been a member since last nite :D One of my biggest concerns were being able to have children. I just turned 26 years old and I'm ready to become a mother, we were actually planning before all this happened but decided to hold on alittle bit becasue we have to get use to this first. Any suggestions with pregnancy and medicine? Thanksso much
~Dx'd December 22nd 2009~<br /><strong>Why stress over things that can be changed......Change them! <br />Why stress over things that can't be changed.....You can't!<br /></strong>
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Postby jimmylegs » Mon Jan 18, 2010 10:15 am

hey there, i would say, due to my personal convictions, look at how your bloodwork matches ms patients and differs from healthy controls. fix your levels so that you match the averages in healthy controls before you go forward - docs will probably tell you to avoid MS supplementation regimens when pregnant. they will say just take this prenatal vitamin product. i have looked at the levels in some of those and they are far below what an ms-er actually needs.

vitamin D is key for protecting your kids against getting ms down the road.

also, pregnancy is protective against relapse in the third trimester. some have relapsed post partum. i recently a post where the mom relapsed when she stopped breastfeeding.

some ms patiients here have had trouble getting pregnant. zinc is lower on average in ms patients. zinc is a key nutrient for fertility. i would make sure your levels of zinc were not low before you started trying, and i would keep an eye on your level throughout pregnancy because a developing foetus is a big drain on the mom's zinc status.

with all that said, i'm not a mom. just a big reader. i'm sure some of the TIMS moms will respond :)
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Postby chele83 » Mon Jan 18, 2010 11:31 am

Hey Jimmylegs,
Thank you so much for all the info! I have found out more in the past day then I have in the last 6 months. I have been on a vitamin D supplement for a few month snow, I'm not sure if you read my intro but this came about from a car accident I was in and after 8 Dr's 3 Mri's and 3 months of physical therapy and a whole lot of blood work and spinal tap this is what I was dx'd with. From the accident I was in alot of pain mostly in my neck and back my Dr said ms does not cause pain so they said I had a bad case of whip lash (I was like that really exists) My vitamin d came back low so they put me on a vitamin d supplement and this was my rheumatologist. This has been a crazy adventure. I'm a very strong person and this has made me even stronger.I know my words might sound jumbled up but its very interesting and nice to just have some type of answers from questions I have. Its been very hard to get any answers from my Dr's which I know they don't know alot but I have felt like I was trapped in a maze and not a clue on how to get out. All we were told was that I needed to pick a medicine and if I went with Capoxine I would never be eligible for research and that after my spinal tap it was 98% confirmed I had ms. Thanks for all of your input and advance I really appreciate it! :D
~Dx'd December 22nd 2009~<br /><strong>Why stress over things that can be changed......Change them! <br />Why stress over things that can't be changed.....You can't!<br /></strong>
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Postby jimmylegs » Mon Jan 18, 2010 11:52 am

hi again chele, yep i saw your intro, and that's good to hear you're on a d supplement.

do you know what your level was and what they want you to achieve through your supplement?

what form is your supplement (ie d2 vs d3) and how many IU per day are you taking? did they suggest that you take anything else in addition to d?

actually when i mentioned interconnected issues i did not mean just the specific set of circumstances that led to your diagnosis, although those are good things to know... other connections that you can look for (they might sound irrelevant) include things like problems with skin, hair, nails, food sensitivities, bloating, muscle issues, breathing trouble, headaches, menstrual cramps, what kind of health issues tend to crop up in your family members later in life, how often you normally catch colds, etc. at least that is the kind of thing i tend to look for when i'm trying to match up known nutrition issues in ms, with other physical manifestations.

google searching seemingly unrelated things together can sometimes turn up suprising info for you to consider!

again, welcome to the site, and glad you are learning so much! it sounds like you have the right kind of attitude to take control of your health :D
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Postby chele83 » Mon Jan 18, 2010 3:22 pm

Hey Jimmylegs,
Its embarrassing to say but I'm not sure the exact Supplement I'm on except that its vitamin d and I'm not sure the IU either. I know I took it once a week for 3 months and now I take it once a month. Thank you again so much for responding to my posts and for all the info.

Chele
~Dx'd December 22nd 2009~<br /><strong>Why stress over things that can be changed......Change them! <br />Why stress over things that can't be changed.....You can't!<br /></strong>
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Postby jimmylegs » Mon Jan 18, 2010 3:37 pm

yw :) i added some links by including my signature below, in case you're interested :)
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Postby patientx » Mon Jan 18, 2010 8:44 pm

Hi Chele,

Just curious - where in VA are you located (you don't have to give the exact town; just wondering if it's northern VA or further south)?

I can't add too much to the good advice you've gotten so far. As far as trying to choose a medicine - the doctors just don't give you much to go on, and I think everyone has been in that boat. But you had written something about the doctor telling you that you wouldn't be able to do research studies if you went on Copaxone. This isn't exactly correct. Each clinical trial has a certain set of criteria for inclusion. True, some want to get volunteers before they have started medication. But many just look at things like the number of relapses in the years prior to joining the study. The studies your doctor is participating in may be of the type that want to see patients before they started meds. But just using the Copaxone won't necessarily disqualify you from participating in future research trials.

On your question of pregnancy, here is where I have absolutely no experience. But I believe most doctors will recommend going off a DMD while pregnant, because they do not know if it will affect the fetus (but ask your doctor). I think some people, after being diagnosed with MS, hold off on going on a DMD because they want to try for a child. But I would imagine this is a very personall decision, and something that you would want to discuss with your husband and doctor(s).
Last edited by patientx on Tue Jan 19, 2010 4:35 am, edited 1 time in total.
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Re: Newly diagnosed

Postby NHE » Tue Jan 19, 2010 2:00 am

chele83 wrote:I'm not sure if you read my intro but this came about from a car accident I was in and after 8 Dr's 3 Mri's and 3 months of physical therapy and a whole lot of blood work and spinal tap this is what I was dx'd with. From the accident I was in alot of pain mostly in my neck and back my Dr said ms does not cause pain so they said I had a bad case of whip lash (I was like that really exists)


It is commonly acknowledged that MS does indeed cause pain. The statement that MS doesn't cause pain is an outdated myth. However, there is MS pain and then there is normal pain. Many years ago, my car was rear ended on the freeway. I had a whiplash injury which took several months to get over. In contrast, due to MS, I have chronic neuropathic pain in my foot. This feels like my foot is wrapped in hot sand paper. It really annoys me unless I happen to be doing something else and it often interferes with falling asleep. My point is that MS certainly does cause pain. If your doctor was implying otherwise, then they were incorrect. However, the pain you had at that time, neck and back, may have very well been due to a soft tissue injury, such as whiplash, that resulted from the car accident. Your doctor may have meant to say that the pain you had at that time was probably due to causes other than MS. If not, then it's time to either educate your doctor or move on to someone else. The NMSS has articles available that discuss pain due to MS.

NHE
Last edited by NHE on Wed Jan 20, 2010 2:39 pm, edited 1 time in total.
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Postby jimmylegs » Tue Jan 19, 2010 3:19 am

hey there NHE, remind me if you've had a B6 or B12 level done lately? and what's in your regimen for Bs?
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Postby chele83 » Tue Jan 19, 2010 9:08 am

Thank you all for replying:)

Patientx I live in Central VA!
NHE= I have been so confused over the past few months because everything we were told was confusing and not really knowing much about anythign except what we could google which we all know what googling can do most of the time! I am defiantely starting to understand more now , I was telling Jimmylegs that I have learned more since joining the forum in the past 48 hours then I have learned in the last 6 months. Maybe the Dr did get it backwards and just said it wrong!

Thanks again!
~Dx'd December 22nd 2009~<br /><strong>Why stress over things that can be changed......Change them! <br />Why stress over things that can't be changed.....You can't!<br /></strong>
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Postby patientx » Tue Jan 19, 2010 9:34 am

Oh - I was wondering if maybe you were seeing a neuro in D.C.
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Postby Filmmaker » Tue Jan 19, 2010 11:46 am

Hi Chele

I would also strongly recommend you to look at the Antibiotics section and see if a chlamydia pneumonia infection would make sense for you as it is strongly believed to be the causal factor of MS. Look for Wheldon protocol.
Good luck.
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