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What therapy has been most benificial youve tried?
brianap
I'm 23 years into my MS journey, which started when I was 14. I've collected a few 'souvenirs' over the years and am definitely feeling more limited in my daily activities due to fatigue, numbness in legs and hands. I saw a physical therapist and she gave me some balance and stretch exercises to help with stiffness etc. I am wondering what has been most helpful to people? What do you wish you had started doing sooner to preserve you abilities now? I want to get the most bang for my buck and not having a huge store of energy would like to know where to focus what I do have. Weights? Stretching? Bladder exercises? Diet?Anything! Thanks for any suggestions.
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1.) Reduce negative effects of main MS C.R.A.B meds (Copaxone, Rebif, Avonex, Betas + Tysabri, etc)
* Take the meds at night
* Really rub hard back and forth across skin with alcohol pad before injecting (can place ice on area for a min before injection)
* He leaves injection behind his ear (with cap on) to let it warm a while (30 mins) before he injects it so it is not so cold.
* Take motrin 30 mins before hand
2a.) Incontinence
Low Dose Naltrexone (LDN: 2-5mg) taken at night really can reduce urinary spasicity and or incontinence. So because you get up less often you get more sleep which reduces risk of diabetes, heart issues and helps mood the next day.
http://www.ncbi.nlm.nih.gov/pubmed/18728058
http://www.ncbi.nlm.nih.gov/pubmed/20695007
2b.) Bowel Movements
Constipation~ Eat fiber and making sure you get enough magnesium before you have these issues. This way as the nerves to GI stops working this will strengthen the innervation so it stays working longer.
Diarrhea~ Use probiotics and counter fungals (this also means reducing sugar intake)
3.) This is for Men with MS~ Bio-identical Testosterone + Libido-stim this with mild exercise (walk into/out of work + 10 mins on eliptical) has improved leg muscles that were atrophing before. Plus if you add it with a 10mg Cialis it helps number of erections/climaxes MUCH better than cialis alone.
~ MS research has shown SOME with MS do much better when on sex hormones: males on testosterone and females on female sex hormones. http://www.universityofcalifornia.edu/news/article/8978
4.) Eliptical is much more helpful than treadmil. He had a lot more foot drop issues with the treadmill. Eliptical exercise 10 mins every other day is helping with his endurance walking.
5.) Supplements:
* Life Extension Multivitamin without copper or iron(plenty of B vitamins for energy).
* Fish oil + prime rose oil OR 3-6-9 Omega supplement
* D3 (if you are not on above multivitamin then make sure you are getting enough magnesium, calcium and potassium to help nerve conduction and MUSCLE function)
* Co Enzyme Q10
* Alpha Lipoc Acid (R-ALA) + L-Carnitine (these last 3 help mitochondrial function that makes ATP or FUEL to try to reduce fatigue by small increments)
* Turmeric or ashwagandha
* Probiotics (refrigerated)
6.) Do NOT eat anything with GlutaMATE (MSGs) as research has shown people with MS have too much glutamate and when this is out of balance it reduces mitochondria function aka less fuel to rebuild damaged tissue and contributes to fatigue plus can kill neurons if it is too high.
* So do NOT eat MSGs.
7.) Get good allergen tests (not typical IgE only testing GPs do) Then we reduced gluten, reducing cow milk (use almond or coconut milk which is better) and reducing sugar (alcohol is fermented sugar and simple carbs convert to sugar quickly) have all really helped.
8.) Reduce stress~ Learn to delegate certain tasks to family/friends, prioritize to get a few things done and let go of the need to do others. Listen to soothing music, snuggle(oxytocin love hormone), LAUGH, neurofeedback, or take yoga all counter stress hormones or effects of stress.
9.) Stay cool~
* Take luke warm showers
* Stay in AC
* Cooling vests
* Cooling hats
http://www.silvereagleoutfitters.com/kula-wide-brim-cooling-hat/
* Chew on frozen fruit (we buy blueberries for $19 per 10lbs freeze and eat over winter). In the summer when it is warmer my hubby eats a few of these frozen blueberries & starts to feel better
10.) Get a arm cane for short walks
Get a 4 wheeled walker with sit down pad and FOOT RESTS for longer walks
http://www.ebay.com/itm/Drive-Medical-Duet-Transport-Chair-Rollator-/320803658816?pt=LH_DefaultDomain_0&var=&hash=item76c12e9685#ht_674wt_944 (thanks StevP for link)
I use at home recumbent exercise bike. What's good about it is that it is done at home at my convenience. No matter what exercise alternative you happen to choose I would recommend having it at home if at all possible. The convenience of being able to exercise whenever you choose is a big advantage. When using the exercise bike I usually try to do 3 kilometers or close to 2 miles per session. It usually takes about fifteen minutes to complete. I try to do one session every day or every other day.
Three kilometers sounds like a lot, but don' forget, its just cycling in a seated position.
It does help maintain my strength, however. Haven't done it enough to know how much it helps with walking?
I think one of the things that really preserves your health (and sanity) is NOT stressing...or I mean finding ways to deal with your stress...and knowing how to communicate with people (being assertive, not pretending everything is fine).
I guess KNOWING what helps with the symptoms too.
i.e.;
bladder symptoms are remedied by a cranberry supplement until sxs subside or oxybutinin
For hardcore pain I use neurontin, methocarbamol, and lidocaine patches
I probably would have had a neuropsych evaluation because now my cognitive abilities are a bit wonky and it would have been great to have some baseline information
I would have started Ampyra right away if I could have. It helps me walk which in turn helps me stay more active.
It took me a while to be afford central AC but GOSH it makes a difference! Central AC all the way!!!
I would definitely have started walking everyday...which i couldn't until I started Ampyra and until I moved into a neighborhood safe enough to walk in. It relieves stress plus lubricates the joints :)
I wouldn't have started on benzodiazepenes, since it actually inhibits postnatal neurogenesis, and is really hard to get off of :)
I would have accepted the fact that it's ok to talk about psychiatric symptoms since when I do have a depressive episode my primary care doc is extremely understanding and puts me on temporary meds to augment my antidepressant therapy.
>>>Accept the fact it's OK to work part time, to take days off of work, to use a cane when you need it.
This was the hardest for me to learn...my current employer knew I had MS when they hired me and it makes a difference trying not to live in secrecy.
As far as your specific symptoms,
I would start provigil RIGHT away, discover the magic of caffeine pills, and learn behavioral strategies to conserve energy.
GET A HANDICAP placard! You have fatigue so saving yourself 20 feet of walking is a method of conserving energy :)
For the hands & feet numbing...talk to your doc about neurontin. It works at very low doses! :)
also....make sure you get good shoes with great support! :)
Stay cool!
This was a great Q by the way @EPagain gave some phenomenal responses.