This Is MS Multiple Sclerosis Community: Knowledge & Support

The purpose of this particular forum is for our members to post their current treatment regimins and then to share how they are doing.

We have found that most of our members do a multitude of things to treat their MS, and by sharing in this way, other members can learn new ideas and see what's working-- and what's not-- for others.

If you only take one iterm, for example only Copaxone, then you should post your experience on the Copaxone forum. This forum is targeted towards people who have multi-part treatments.

Each person should start their own topic.

The content of the post should be something like:

Treatment : How Long : Dosage
Copaxone : 1 year : daily injection
Alpha Lipoic Acid : 5 months : 500mg's
etc.

and then a summary of how you're doing healthwise and what you think is responsible for certain experiences (e.g., "I think Copaxone has helped me walk better").

We think this can be useful, so post away!

MS 4 years

Copaxone 4 yrs in August
LDN since April
Numerous vitamins
Fish Oil Flaxseed Oil Primrose Oil Vit E

Copaxone helped me feel better and recover froms serious illness.
LDN helps me with energy, strenght, mood, and I have about 1/10 the pain in my hands and feet as I had before the LDN.

I have less fatique while taking the vitamins regularly After adding the primrose oil I suddenly found that my hair was growing longer then it has since my teen years...no idea why that would help but I tried to grow it to this lenght for years and never could. The flaxseed oil seemed to help me when my body couldn't regulate hot and cold. I was constantly hot then suddenly had teeth chattering cold. It improved when I added the flaxseed oil.

MS - 49 years (since birth - they said when I was three that I'd be in a wheelchair by the time I was a pre-teen, but they couldn't tell me why! Now we know I have MS and always did. HAH! I fooled them!)

Norpramin (Desipramine) - 25 mg. once a day
Keppra (levetiracetam) - 750 mg. twice a day

Multi-vitamin (for mature adults because it's loaded with extra B's and a few other minor things - i.e. lutein and lycopene)

Grapeseed - just one small dose (pill) once a day (gotta load up on a few extra anti-oxidants - keeps ya looking young...hehehe)

Fish, Flax and Borage capsule - one capsule a day (This one also contains oleic acid, too)

Green tea - one cup every morning. (Haven't picked up a virus since I started drinking green tea, and since starting on this kick several years ago - before adding extra vitamins or medications, I noticed that I had stopped picking up viruses that went around the office, etc., and since this was the only change in my diet/health that I had made at that time, it was the only thing I could contribute it to. Plus, more anti-oxidants and word has it, it's good for arthritis, etc. Gotta keep looking and feeling young! hehehe...)

Other than trying to eat healthy and exercising, I think that's about it.

EDIT: Oops, I forgot to mention how I'm doing healthwise. Doing fine. At this point in time, according to my former neurologist, now a doctor would be hard pressed to find MS (or any type of CNS disease) at all, nor am I experiencing the awful and numerous symptoms and neurological decline that I had been experiencing continually over a period of years. I do still have a little left side sensory-type things (a small bit of aching), but so minor that you could simply attribute it to old-age now! HAH! And that's still improving.

Deb

RRMS, dx 8 mos ago at age 57, still trying to working out “best management”.

Drug for MS “Disease” Avonex 6 mos.
Drugs for Menopause and may be therapeutic for MS:

Ethinyl Estradiol (.5mg) + Estriol (2mg) + Progesterone (100mg) + Testosterone (20mg) All compounded to be bioidentical. Dosage(s) subject to change based on outcomes of hormone level tests.

Supplements ALCAR 1500 mg; L-Carnitine 500 mg; Alpha Lipoic Acid 1200 mg; Fish Oil, Flaxseed (oil, capsules and ground); Calcium 2000mg; Vitamin D 3 1200 IU; Magnesium 750-1000mg;
Vitamin B Complex; CoQ10 200 mg; Inosine 1 g day until serum tested; Thisilyn for liver support.

Diet: Low fat, protein--chicken, fish, soy; fruit, veggies, yogurt, fewer carbs and avoid sweets.

Exercise: Water aerobics (2x week), regular aerobics (elliptical and treadmill to practice walking), strength training, weights and core (3x week), stretching (5x week) + meditation for stress.

Impressions: Most “visibly” helpful are exercise, meditation (decrease stress), and alpha lipoic acid (definitely helped numbness, burning and tingling).

Relapsed 2 mo. into Avonex and while also on Lipitor at 80 mg for approximately 4 mos. (for MS and high cholesterol). Lipitor discontinued due to elevated liver enzymes.

For “newbies” to Avonex: I don’t seem to have side effects any more unless I hit a vein.

My walking is getting better. Some of those unused neurons in my brain (80-90%) may finally be taking on some functions of the ones that died.

Sharon

DX 4/04 at age 50

On my 3rd injection of Avonex

Taking basic multi-vitamin. Acetyl - l Carntine 2000 mg daily
Provigil 150 mg (1.5 tabs)
Acidolophis (sp)

No side effects so far from Avonex...I started on 1/4 dose and will have a full dose this friday.

I follow Atkins wol, do 2.5 miles on the treadmill.

Sometimes lift weights.

Still tired, get groggy in the afternoon.

I have been taking the Acetyl-L Carntine for 2 weeks, 1000 2x daily.

Should I NOT take it with food?

I see no difference in my energy even with the Provigil, but I havent had too many brain fog days either....

_________________
Debe
dx 04/04 RRMS
Avonex 6/04-1/06
Rebif 1/06

This was my last week of injecting the interferon (I won't say which one). I never felt comfortable using a drug that had such severe side effects. But, the medical community seemed to think that these drugs really do help and I use them despite my doubts and concerns. I am now questioning the value of the ABCRS. Is it really worth the pain and cost for such a modest treatment that may or may not help?

I never paid much mind to my diet. I have always been an active person and pretty much ate whatever I wanted. I never put much stock into vitamins. Now I am wondering if this might be a valued treatment for my condition.

I would like to explore the possibility of adding a supplement regimen to my diet. Is there a common list of supplements that ms users take and all agree upon? Does anyone know of any doctor or medical community that has a standard list of things to take?

Thank you.

Debe

Glad you're doing well with no side effects from Avonex

I started the ALCAR based on advice from my pharmacist and only learned on another thread that it should be taken on an empty stomach.

Felly recently did a very nice post on some supplements on the Diet/Vitamins/Minerals thread, including ALCAR.

Guest

Sorry you had a rough go with the side effects. I am not aware that there is a standard list of recommended supplements. Personally, I am still trying to sort that out. You might want to start by checking the thread I mentioned earlier for some ideas.

A book my pharmacist recommended was brainrecovery.com by David Perlmutter, M.D., Board Certified Neurologist. There is a chapter in it on MS and I must say it's interesting. So far in my personal scouring of MS info I don't remember seeing his name mentioned and I don't have a clue about how the MS community might regard his advice.

Best to both of you.

Sharon

I finally got the results of my hormone testing (saliva method).

The most stunning finding was that I am not making progesterone.
Cortisol was also off, as was DHEA. Estradiol was ok and testosterone was out of sight. So, I have a new script:

8 mg estriol and 300 mg progesterone (as hormone replacement therapy, but it may be therapeutic for MS too)

Testing will be repeated in a few months and if the cortisol and DHEA are not "better" as a result of the new script, recommendation was that I be tested for adrenal insufficiency. (No wonder I think this MS is hormone related. )

For people who may be curious about their hormone levels, the website: www.womensinternational.com has a link to labs that do hormone testing. It is possible to have saliva tests without a doctors order in the US. I visited several web sites that do testing and they do tests for men and women.

A while back on the estriol thread I posted some information about progesterone. The Myelin Project is in the process of planning a trial for it in post-partum women with MS in Europe.

Sharon

Copaxone+Zocor 80mg daily+500 mg Trans-ferulic acid + curcumin 2000mg + two megvitamins
Feel great and around first of November, I was able to tell that my nervous system inflammation had subsided. Haven't felt this good in years. Great Christmas present.