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New to forum

Hi everyone.  I was diagnosed with RRMS last summer after a short, though frustrating, diagnosis period.  My initial symptoms (October 2010) remain with me (numbness, tingling and weakness in my right leg) and I endured 2 weeks of facial numbness and pain last November (prednisone taper).  I still have slight sensation disturbances in my mouth from the facial numbness.  

Upon diagnosis, my neuro's first course of action was Avonex...so I went with it.  After 6 months I am done.  I feel like I am giving up my quality of life as I give up my weekends to recover so that I can still struggle through the week to work.  I don't fully recover from the flu-like side effects until about Wednesday (I take the injection on Friday night).  I am tired all of the time, my legs ache intermittently.  I am beginning to feel depressed and agitated and I am not taking another med to fight the side effects of the first med.

So my last injection of Avonex was last Friday (Mar 2) and I am now considering other options.  I would prefer to not do any of the CRAB drugs, but am fearful of the repercussions of not being on something.  At this stage of my disease, I am a little more confident and not being led blindly to pharmaceutical options, but understand their importance in disease management.

My question today is about alternatives to traditional meds...  
What about LDN?  
Anyone heard of Dr. Terry Wahls?  
Those of you not on any CRAB drugs - how are you doing?
Is anyone using supplements as treatment?

I look forward to your input.

Luna

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Hi and welcome to the forum.  I think you may find there are quite mixed views on treatment and at the end of the day it is a very personal decision which is yours and yours alone. I was dx'd about 2 years ago and my neuro said that there were several options available to me; do nothing, go on CRABS or consider a drug trial. I perhaps shd mention that I live in England.

I chose the latter option and am have been on an oral drug trial for a drug that I beleive is similar to Gilenya which is licensed in USA. So this is something that you could investigate and talk to your neuro about.

I personally am a great believer in looking after my own health, watching my diet and trying to exercise although I do not think that this alone will ever cure me of MS.I have read a lot about miracle recoveries from MS and remain a little sceptical that diet alone can make this happen.

I would encourage you to research for yourself as much as you can about MS but be careful not to pay for anything wild and wacky.

With best wishes

Sarah x
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9 Comments Post a Comment
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1831849_tn?1383231992
Hi Luna welcome to the group :-)

I have never taken CRABs. My initial DX, last October, was SPSM. My MS guru said this put me out of reach for CRABs. I am getting Tysabri, from which I have no side effects.

I had not heard of Terry Wahls, so I looked her up. I am suspicious of the those who share information only if you pay them :-)

Kyle
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I was diagnosed last December and have been on Copaxone since 02/02. There are no flu-like side effects with it, and I am very thankful for that. Have you spoken to your doctor yet about your desire to try something new?

There are several people on this forum who supplement DMD treatment with diet changes and have had great success. I think most will recommend that you discuss your plans with your doc before making changes.

Re: Terry Wahls, I am suspicious of any doctor who claims to have found a cure for a disease when scientific evidence has not yet documented that claim. Doing so goes against the most basic tenets of science.

Wishing you the best,
Jane
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Welcome to the forum

I guess I am one of the lucky ones -  been on Avonex and the only side effect I get is a headache halfway thru the day after my shot

I agree with Kyle and Jane - if this diet she is on is so great and she is a doctor why would we have to pay for the information -  Share with us for free!  

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Echoing Jane's thoughts on Dr. Wahl...but my take is, if you eat good, pure foods, grass fed meats, and stay away from processed junk, you're going to feel better (with or without MS on top of it all).  I saw her Ted video, and I think she may be enjoying a really good remission, right now.  Just my $0.02...

I'm on Tysabri, and like Kyle, I have no side effects.  I'm JCV negative, too, so I can pretty much take this stuff without worry.  I do get my liver fx tested every 6 months.

So, Welcome!  Keep us informed.
Cheers
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1253197_tn?1331212710
Hi and welcome to the forum.  I think you may find there are quite mixed views on treatment and at the end of the day it is a very personal decision which is yours and yours alone. I was dx'd about 2 years ago and my neuro said that there were several options available to me; do nothing, go on CRABS or consider a drug trial. I perhaps shd mention that I live in England.

I chose the latter option and am have been on an oral drug trial for a drug that I beleive is similar to Gilenya which is licensed in USA. So this is something that you could investigate and talk to your neuro about.

I personally am a great believer in looking after my own health, watching my diet and trying to exercise although I do not think that this alone will ever cure me of MS.I have read a lot about miracle recoveries from MS and remain a little sceptical that diet alone can make this happen.

I would encourage you to research for yourself as much as you can about MS but be careful not to pay for anything wild and wacky.

With best wishes

Sarah x
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Hello.

I have not tried any of the CRAB drugs and am on Gilenya and though I haven't experienced any flu symptoms, there are some symptoms that many including myself have experienced.  

Many take the Gilenya at night before bed as they experienced fatigue.  Mine wasn't too bad but many list it as a major complaint.  

Hair loss is also something many have experienced as well but as I experienced hair loss before I started before I went on the medication I am not sure if it was due to medication or just the stress of my initial experience with MS.  (Many state that after about 6 months that it slows down or stops).

There have been quite a few of us that have had acne right after starting the medication.  I experienced this.  The acne seems to be clearing up after 7 months not totally but much better.

They have a pretty good support group and a facebook page.

Medication is a personal choice and many different things can affect the decision you make.  Good luck with your research.

Smile, :)

wildcat2x  
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Thank you everyone for your comments and opinions.

We pay for information all of the time be it from doctors, labs, hospitals, or someone who claims to have found a cure for an uncurable disease.  I am interested in alternatives to traditional medicine and Dr.'s such as Terry Wahls, George Jelinek and Roy Swank offer alternatives that I believe are worthy of further study and application.  I think it would be interesting if one of the big pharmaceutical companies funded a study to prove or disprove the nutrition/supplement approach to treatment.

MS is complicated as you all know and science cannot prove everything.  Sometimes we have to step out in faith and on instinct and make difficult, personal decisions about treatment.  For me personally, I cannot put all of my faith on a traditional pharmaceutical approach to treating MS.  I believe that my body has the power to heal if I give it the nutrients it needs as well as exercise, meditation, etc.  

Again, thank you for your comments.  I look forward to participating within the medhelp MS forum.

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1831849_tn?1383231992
Hi Luna -
I respect your beliefs that there are alternatives to traditional MS treatments. As long as there are no definitive answers we should be open to all possibilities.

For me, alternatives would only be pursued on top of my existing traditional course of action. Someone I know with MS had been doing pretty well for years, using one of the CRAB's. For reasons only she knows she stopped the CRAB therapy and pursued an alternative solution. She nearly died. She was in the hospital for weeks, part of that time in a coma. She is home now, but has only regained about 30% of her pre-alternative therapy functionality.

So for me, Tysabri works :-)

Kyle
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Thanks Kyle.

I will likely do a combination of traditional and alternatives.  I am young (43) and still have a lot of years ahead of me (God willing) and I want those years to be the best they can!

Take care!
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