Newly Diagnosed: Torn between treatment options. Help?

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Newly Diagnosed: Torn between treatment options. Help?

Postby JSpeece » Sat Mar 03, 2012 7:36 pm

Hi there,

I'm a 37 year old male who's diagnosis was confirmed 1 month ago. The story goes; I was in a minor car accident in June of 2011 and during the CT scan an abnormality was noticed. Three MRI's and a LP later I have been diagnosed with relapsing-remitting. Until the time of the car accident only one episode stands out (5 weeks prior to the MVA) that was a MS exacerbation. I had numbness and tingling down a leg and increased heat in my thigh for a week. Maybe a couple of optic flare ups over the years but nothing confirmed. I have been to my neurologist, Oregon Health Sciences University and a Chinese Herbalist/ Acupuncturist. My neurologist and OHSU want me to begin Avonex ASAP, while my Alternative practitioner wants me to try Alternative Treatments to begin with (diet, herbal supplements, acupuncture). There are several (20+) lesions present on my MRI scans (although only 1 new in 6 mos). I'm torn on a treatment decision. My heart tells me to wait on the conventional treatments, but the scientist in me tells me otherwise.

Anyone tried only alternative treatments? Any advice is welcome. My rationale is this: I would not have known if not for the MVA. I do not experience many symptoms, although I'm beginning to notice some numbness in my arm and increased fatigue (my alternative doc says is diet related and mineral deficiencies). Argh, so torn!!!

My apprehension of beginning Avonex is the immediate side effects and the unknown of long term side effects.

Thank you for any advice, and I would like to say that I am here for anyone, anytime.

- John
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby jimmylegs » Sat Mar 03, 2012 9:18 pm

hi there, when i was first dxd i was all gung ho to do the drug thing. they had me set to take rebif. meanwhile i was reading, read so much that i decided against the mainstream drugs. had a good personal rationale for making that choice.

today i would definitely classify myself as an 'alternatives only' person - no conventional ms drugs to date. but again, a strong personal rationale.

i suggest lots of reading! you've found a very supportive place to start along the learning curve. my signature links contain additional info/reading resources if you're interested.

welcome to the forum :)
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby jackD » Sat Mar 03, 2012 10:42 pm

I took Avonex for 10 years.

#1 It works

#2 You will survive.

#3 After two months I had very minor reaction to the shots. First 3 injections were a bit of a fright - chills, sweats - bad nights.

#4 Find out HOW MS progresses. Forget about the search for the ultimate cause of MS. Hint read my posts.

avonex-f5/topic4186.html

natural-approach-f27/topic18850.html

http://home.ix.netcom.com/~jdalton/Yongrev.pdf
(see fig 2 and narrative on page 505) note MMP-9s destructive actions!!!


jackD

ps It is the MMP-9s that make the hole in the Blood Brain Barrier and enter the Brain and dice up the myelin.

You will learn that Avonex takes at least 6 months to start working properly. If your MS is active it will delay that time a lot. Do not expect to see much MRI results for 2 years.

Good luck! Ask questions.
Last edited by jackD on Sun Mar 04, 2012 10:04 pm, edited 4 times in total.
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby CVfactor » Sun Mar 04, 2012 12:16 am

Hi, im kind of in the same boat as you in that I first tried other approaches. I have had some success but I have decided to go on Copaxone as well as to continue on with alternative approaches.

This paper helped me make this decision:
http://www.jhasin.com/files/articlefiles/pdf/ASM_9_2_p37_41.pdf

Best of luck in your decision.
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby milesap » Sun Mar 04, 2012 4:53 am

Get CCSVI checked out immediately get veins opened before damage. Then listen to your body it maybe enough if you don't have symptoms. If you have symptoms after CCSVI then listen to your Neuro
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby milesap » Sun Mar 04, 2012 4:56 am

to learn more about CCSVI visit
http://ccsvi-ms.ning.com/
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby euphoniaa » Sun Mar 04, 2012 9:17 am

JSpeece wrote:Anyone tried only alternative treatments? Any advice is welcome.

My apprehension of beginning Avonex is the immediate side effects and the unknown of long term side effects.

- John


Hi John, and welcome, although I'm sorry for your new diagnosis! I hope you'll take the time to wander around the entire forum, which is loaded with information about any kind of treatment or non-treatment that you're interested in. There are even separate sub-forums on every one of the mainstream meds or treatments, as well as stuff in the pipeline. It's all VERY confusing, and there are no simple, absolute answers when it comes to MS.

In fact we all seem to be unique in both the ways MS manifests itself in our bodies and the way we react to treatments - and you will probably find that our individual opinions on treatments are just as varied. I personally don't consider MS a single disease anyway, which someone just reminded me about when they quoted one of my old posts today. It was from a thread where I posted my own MS experiences in excruciatingly boring detail, and also posted my MRIs, which, I think, liven up the written description considerably. :smile:

euphoniaa wrote:Each of us is unique in our MS, and I still think that we're unique partly due to our own personal combinations of medical conditions. That's why we don't react the same way to drug treatment, CCSVI treatment, or anything else. IMO, MS can't possibly be a single disease that's shared by all of us. When it comes to symptoms, it's not always MS anyway.


I won't give you a suggestion for the best treatment, but I do feel obligated to clarify the statement made earlier in this thread by "milesap":
milesap wrote:Get CCSVI checked out immediately get veins opened before damage. Then listen to your body it maybe enough if you don't have symptoms. If you have symptoms after CCSVI then listen to your Neuro


Yikes. I'm not sure why anyone would even make such a matter of fact statement to one who is so newly diagnosed. I'll add a previous quote I made about CCSVI in another thread.

Thread link here:
general-discussion-f1/topic19095.html?hilit=options
Here's the comment I made about CCSVI to a newcomer who was given a similar suggestion:
euphoniaa wrote:As for CCSVI, there's a forum for that here, too. It’s a BIG forum, with lots of discussion on a new, under-investigated vascular treatment approach that’s fraught with controversy and confusion. Even the doctors with the most experience disagree on standards for how to either test for CCSVI or treat it. So…the comments to a forum newcomer that "CCSVI is real" and "get yourself checked" may not be especially helpful in explaining an extremely complex issue. (See the CCSVI Forum for info.)

Reported results (still mostly anecdotal) from those who have been treated for CCSVI vary from no change, to some improvements (often minor ones) quickly gained - quickly lost, to longer lasting improvements (often minor ones), to serious injury. There are few places even in the U.S. that do the testing/treatment...


In fact, I live right in the midwest of the U.S. and even CCSVI testing is not a viable option for me.

So, best of luck to you, make yourself at home, and keep asking questions. Here's a link to the thread with my own story:

general-discussion-f1/topic16335.html

Heads up, I'm basically med-phobic, so I don't know if you'd call my approach an alternative "treatment" or more of an avoidance of treatment instead, but I'm doing okay after 38 years of MS. Also, considering my severe reactions to vitamins/supplements, I feel obligated to urge caution with them as well. No matter how many studies tout omega 3s, vit D, (name your supplement here), as the answer to our health, I've had worse reactions to some vitamins and supplements than anything MS has ever done to me - I don't care what the studies say! I'm especially allergic to most Omega 3s. 8O

Please, please monitor your reactions closely, and good luck!
Last edited by euphoniaa on Sun Mar 04, 2012 10:20 am, edited 1 time in total.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby Taurus » Sun Mar 04, 2012 9:36 am

John

My suggestions are

1. Immediately start taking LDN (Low Dose Neltrexone)
2. Check for CCSVI
3. Go for chiropractic treatment and check your spinal alignment especially Atlas since it all began after that minor accident
4. Get yourself checked again thru MRI after six months on LDN and after having done something for point 2 and 3. If disease progression does not stop, then go Copaxone.
Wish u best of health

Raza
Pakistan
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby euphoniaa » Sun Mar 04, 2012 9:52 am

Taurus wrote:John

My suggestions are

1. Immediately start taking LDN (Low Dose Neltrexone)
2. Check for CCSVI
3. Go for chiropractic treatment and check your spinal alignment especially Atlas since it all began after that minor accident
4. Get yourself checked again thru MRI after six months on LDN and after having done something for point 2 and 3. If disease progression does not stop, then go Copaxone.
Wish u best of health

Raza
Pakistan


Hi Taurus, I guess since you're suggesting LDN again to another newcomer, I'll also add the comments I made about it on that same thread I linked above. :smile: I would advise a newcomer to also be aware of the possible reactions when suggesting either CCSVI or LDN to a doctor (see my comment below). Both options tend to freak docs out completely. :smile:

My comment from the same thread I linked in my post above
euphoniaa wrote:I think Taurus is suggesting that you try a prescription for LDN, or Low Dose Naltrexone, which is a weak version of a med that is used by some patients off-label for MS symptoms. There's an LDN forum here, but there has been very little research about its effects, so most of the reports are anecdotal.

As for LDN, the last doc I asked for LDN fired me as a patient with a certified letter. Plus I progressed to using a cane for the first time midway through my year on LDN. And CCSVI? The few clinics that do testing, treatment, or follow up are hundreds of miles away from me.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby MarkLavelle » Sun Mar 04, 2012 10:47 am

JSpeece wrote:I'm torn on a treatment decision. My heart tells me to wait on the conventional treatments, but the scientist in me tells me otherwise.
[...]
My apprehension of beginning Avonex is the immediate side effects and the unknown of long term side effects.
Do yourself a favor and trust your inner scientist!

Go read "Going MS drug free: the flawed arguments" (http://activemsers.blogspot.com/2011/08 ... ments.html). It makes the most comprehensive argument for DMDs I've seen. You'll probably find the rest of his site and forum interesting, too.

Even Vitamins can have bad side effects, and you can always switch DMDs if Avonex is too hard on you. And some people have been taking it well over 10 years.

Best of luck,
Mark

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby mrbarlow » Sun Mar 04, 2012 10:59 am

MarkLavelle wrote:
JSpeece wrote:I'm torn on a treatment decision. My heart tells me to wait on the conventional treatments, but the scientist in me tells me otherwise.
[...]
My apprehension of beginning Avonex is the immediate side effects and the unknown of long term side effects.
Do yourself a favor and trust your inner scientist!

Go read "Going MS drug free: the flawed arguments" (http://activemsers.blogspot.com/2011/08 ... ments.html). It makes the most comprehensive argument for DMDs I've seen. You'll probably find the rest of his site and forum interesting, too.

Even Vitamins can have bad side effects, and you can always switch DMDs if Avonex is too hard on you. And some people have been taking it well over 10 years.

Best of luck,
Mark



I would tend to agree with this line at least in the short to medium term. My advice would be to go with the DMD's will you research the alternate approaches.
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby civickiller » Sun Mar 04, 2012 12:41 pm

i just find it funny that MS numbers are growing as countries get more "modern"

i try to take everything into consideration as i look for an alternative cure

1. first is diet, as we eat a lot more processed food, i think we have to eat more whole foods like fruits and vegetables

theres so much ways our lives have changed over the last 100 years. but who knows there could be so much things

i found a few pwMS has had mononucleosis before, idk
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby JSpeece » Sun Mar 04, 2012 1:31 pm

I appreciate the comments and responses from folks. There is an abundance of information on this site, and I feel that I have learned more in the last 24 hours than I previously new. I admit that I was dragging my feet to research MS until I received the final Dx.

Can an individual begin, suspend/stop, return to the same DMD?

On a more personal note. I'm a 1st year Masters student, and my mentor/adviser is suggesting I switch to a non-thesis Masters degree to allow time to devote to my health, allow some "free time", etc. Regardless I have a concern about heavy class load and beginning a DMD and the associated immediate side effects. I'm wondering if it would be wise to step back from school for a time while I determine what course of treatment that best suits me and evaluate if it is working and then make the necessary changes. I suppose my question related to this is am I to worried about this and the stress that goes along with graduate school?

Again any input is welcomed, and thank you for the comments above.
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby jackD » Sun Mar 04, 2012 2:54 pm

I hate to say it but backing off the Masters Degree might be a good idea.

I kept taking courses at night and weekends. I cashed them in and got two more undergraduate degrees in related fields that helped me in my job /career.

The fatigue, word recall and speech promlems were BIG problems. I did many special projects to continue to be a valued/critical employee.

I am now a triple dipper - I retired from the military, retired from civil service and I am collecting social security. YES! I cheated a little bit.

It took me ten more courses to earn each additional degree. I took no more than 2 courses each semester.

My jobs required me to work very long hours and many extra weekends also.

The military folks were not very understanding.

I was a bit lucky because I was not dxed untill I was 52 years old. I had minor problems for 10-15+ years before needed some medical answers.

jackD

p.s. I could NOT learn a foreign language!!! I tried two but failed both times. YES it was the MS for sure. I got a waiver to get my degree. I did learn that I could write some outstanding computer programs!!!
Last edited by jackD on Mon Mar 05, 2012 11:34 am, edited 2 times in total.
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Re: Newly Diagnosed: Torn between treatment options. Help?

Postby lyndacarol » Sun Mar 04, 2012 3:27 pm

John, just to prove that you can find someone on this website who will support every side of the question, I will suggest that you evaluate your abilities for working on a Masters degree program. If you are able to do the work TODAY, I say go for it. None of us knows what tomorrow will bring; if difficulties appear, find the answers to them then. Live your life, follow a healthy lifestyle, develop good, supportive friendships.

If you are impaired at this time in a significant way and cannot do the work, your current abilities will determine your decision. Consider your options, discuss the situation with a trusted confidant. Prayers can help. You WILL make the right decision for you. All the best to you – your friends here are rooting for you.
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