Natural Treatments?

[FrankieT]

Since so many of us live in limboland for soooooo long, we are at bay while awaiting possible medical treatment. But there are many of us who have been through so much of the 'ruling out other diseases' phases, and are really just awaiting a formal dx before medical treatment can begin.

I am seeking what type of other things a limbolander might do to help alleviate the symptoms and deter an attack? For example, have foods been identified as being an aggravating factor or maybe other foods have helped with certain symptoms. What about vitamins? Anything....

I am beginning to lose the trust in my legs and balance, and am beginning to walk with crutches on occasion. Cognitive issues are interfering with running my business and the added stress of waiting and feeling helpless is definitely not helpful.

I am trying the obvious, getting more sleep, therapeutic journaling for stress reduction, yoga makes me nauseated so I don't really do that, and typical physical exercise is getting really hard to do because of balance issues and leg weakness.

I would appreciate any advice that can help make one in limboland feel proactive and less helpless while awaiting the insurance and doctor game.

Thanks!!!

[goofysmom1]

There is a great book about this very subject!!  I just read it - I am not diagnosed yet, but my neurologist has put me in the "probable/Highly possible MS" category.  Everything else has been ruled out - she would like a bit more evidence as I have just one lesion on my corpus callosum.

The book is called Complementary and Alternative Medicine and Multiple Sclerosis by Dr. Allen Bowling.

It explains all of the various different alternative medicines and how they work with MS and whether or not they can be used or should be avoided.  It is very helpful.

The book explains that the reason that you don't want to "boost" or "rev up" the immune system is because with MS the immune system is already in overdrive.  

My neuro is very supportive of alternative medicines, and uses this book as a reference.

I am currently seeing a naturopath, acupunturist, medical massage therapist and a physical therapist.

I am taking:
B12/B-Complex injections weekly
5-HTP daily
Omega oils daily
Vitamin D daily (2,000 i.u.)
Women's daily vitamin
2 different tea pills that the acupuncturist has recommended (herbs in pill form)

How are these natural treatments working?  Well, so far the vitamins & supplements have helped with my moods, headaches, sleep and the B12/B-complex helps with my fatigue (somewhat).

I have only had 3 acupuncture treatments, and it has helped my hip pain and my headaches.

The unfortunate thing about a lot of these natural treatments is that they aren't covered by insurance, and can be costly.  Especially when they want to see you weekly...

Good luck,
Chrisy

[FrankieT]

Hi thank you for your comments. I don't understand the logic behind not boosting your immune system. Or maybe I should say, I don't quite understand the definition of boosting your immune system or why that is bad.

Could you please elaborate?

Before all of this, and still currently, I take a mulitvitamin, extra calcium (40 year old female, you know...) ginko biloba (1000mg daily) additional C and a b complex. Is that too much??

[HVAC]

I was taking all the vitamins and supplements mostly because I had such a bad case of mononucleosis a couple of years ago. My MS Specialist told me to quit everything except vitamin D. He told me he does not want me to be reving up my immune system. I do not know if he is right but he is my Doctor.

Alex

[Tammy826]

Heres what I have been told by a lady who has a dx of MS. Evening primose, vit. b12,accupuncture, massage, all help her. She finally got a neuro that would prescribe LDN (google it, its worth the read) & is doing great on it. She also claims red meat is inflammatory so she stays away from it. This is 2nd hand info but she swears by it & no longer is on DMDs & says she is doing great & has had no remissions in 2 yrs. I hope this helps, by the way , I'm also a limbolander! Take care & God bless you!

[JonGalt]

To start here, I am dx'd (Dx'd in like 2 months, so I am still in denial about the whole thing).  I know very little about MS.  I have been dx'd for a couple of months.  I am not on any drugs yet,  however my neuro will push them on me next appointment.  

I am taking:
Omega Oils
Cod Liver Oil
Multi Vitamin
Extra Vitamin D
Vitamin B12 (Methylcobalmin form)
Digestive Enzynes

My Diet it based around Atkins.  No sugar, very low carbs, and lots of fat (even saturated - coconut oil is my fave).   My cholesterol is perfect, lots of the good very little of the bad.   I have pretty good energy levels which I attribute100% to this diet. I am a firm believer in the quote "When diet is poor, medicine is of no use.  When diet it good, medicine is of no need."  

I have been fortunate enough in the last 3 years to research extensively on diets, nutrition, and exercise; which was prompted by extremely low energy levels and mood swings (possibly MS related, I have no idea??).  I lost a lot of weight and became a weight lifter (which I still am today) I have never looked better in all my life and am currently hitting the gym 6 days a week of intensive weight lifting and cardio.

There have been studies done on ketogenic diets (Essentially Atkins) and seizure disorders where seizures where much better controlled. I know not MS but still neurological.  

I also smoke pot when I can't sleep at night.  I find it helps me sleep and just being well rested lets me feel a million times better.

I disagree with the notion we should avoid immune-stimulate, I believe that autoimmunity is a response of a weakened immune system not a healthy immune system.

I'll keep you posted on how long I can keep up this pace!

[sllowe]

Hi Frankie,

I'm not in limbo, but so many of us are, and dx'ers need tips to get by too, making this a terrific discussion!  

Frankie asks... what can we do to be proactive while we wait?  

From what we have so far:
-exercise
-support group, friends.
-hypnosis
-vitamin c, vitamins (be careful to no "boost" immune system)
-PT
-rest
-vaccines

Who's doing what to get by?

[HVAC]

As soon as someone said MS I started exercising and really cleaned up my diet. I do not have money to treat this disease so I figured I go into it as healthy as I can be otherwise. started eating more fruits and vegetables, I pretty much cut out gluten. I eat little processed food. I cut out sodas even diet which was hard and drink more water. We even have a water cooler in the kitchen.

I was in Limbo for two years and have been diagnosed for over six months. It is probably coincidence but I only go to the Neurologist for routine visits. I have never been on steroids. All my blood work is perfect even high vitamin D. My Neurologist does suggest taking Vitamin D to all his patients.

I tried acupuncture and massage neither worked for me but they do for others.

I use self hypnosis to deal with most of my pain. I have a good therapist who is also trained in hypnosis.

Having someone to talk to is important. I was especially freaked out when I was in Limbo. Also friends you can laugh with.

Take care,
Alex

[Fluffysmom]

First thought that comes to mind; have you considered water exercise?  Balance issues aren't such a problem in water, if you're not experiencing too much dizziness.  I was really dizzy, and gave it up for quite some time, but am considering returning to water aerobics since my vestibular PT really helped the dizziness.  I need more exercise!

If water aerobics doesn't work, you can try walking back and forth through water; the added resistance give you more exercise, and the water keeps you upright, or doesn't hurt if you lose your balance.  You can move your arms through the water to work them out.

Another idea; do everything to avoid becoming ill.  I have found that every time I've had a virus or sinus infection, all my symptoms have gotten worse.  Eat healthy foods, lots of fresh vegetables and fruits, plenty of water, you know.  Be scrupulous with hand-washing, avoid people that are ill if possible.  Get your flu shot, if you haven't already and can tolerate it.

I take an extra 1000 mg. of Vitamin C, 2000 IU of Vitamin D, and Multivitamins.  I'm just working my way out of limboland after 20 months; will see about starting my disease modifying drug on Monday.

I need to practice meditation, as I know that stress makes me feel worse, too.  Mmm, wish I had access to a Tai Chi class.  Oh, locally there is a Gentle Yoga for People with MS; that might be more tolerable than what I tried a few years back at 24 hour fitness!

I would love to get more sleep; If you have any methods that help you out, please share!

I'm looking forward to reading what other people share.

Take care,

Kathy