Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Here's a survey of where your MS has been and where it is now.
A.) Type of MS and year of DX, (or no dx)
B.) On a scale of 1 - 10 with 1 being so few symptoms that it does not affect your life at all to 10, you are unable to get out of bed and need 100% care what is the worst (you have BEEN with your MS "EVER."
C.). On a scale of 1 - 10, (same thing), but where you are at (at this point in your life). with your MS.
D.) What you are doing for treatment. Include diet, exercise, rest breaks each day, over the counter meds, and prescribed meds for the MS.
E.) Number of years dealing with MS symptoms.
I apologize if this is too complicated. I also apologize to anyone not wanting to disclose any parts of this....please skip parts that you do not feel comfortable disclosing. I think this will be really helpful to all of us and that is why I want to do this.
So I will start.
A. RRMS (dxed 1996)
B. 5 (I have been in a wheelchair for 3 months)
C. 1 Almost in full remission. Very few symptoms.
D. Mostly gluten free and sugar free diet, (mostly eat vegetables, fruits, and protein), exercise 20 - 30 minutes 5 days per week, 4000 iu vitamin D. No other MS meds.
E. 19
Thank you in advance to anyone completing this survey.
-Diana
A.) Type of MS and year of DX, (or no dx)
B.) On a scale of 1 - 10 with 1 being so few symptoms that it does not affect your life at all to 10, you are unable to get out of bed and need 100% care what is the worst (you have BEEN with your MS "EVER."
C.). On a scale of 1 - 10, (same thing), but where you are at (at this point in your life). with your MS.
D.) What you are doing for treatment. Include diet, exercise, rest breaks each day, over the counter meds, and prescribed meds for the MS.
E.) Number of years dealing with MS symptoms.
I apologize if this is too complicated. I also apologize to anyone not wanting to disclose any parts of this....please skip parts that you do not feel comfortable disclosing. I think this will be really helpful to all of us and that is why I want to do this.
So I will start.
A. RRMS (dxed 1996)
B. 5 (I have been in a wheelchair for 3 months)
C. 1 Almost in full remission. Very few symptoms.
D. Mostly gluten free and sugar free diet, (mostly eat vegetables, fruits, and protein), exercise 20 - 30 minutes 5 days per week, 4000 iu vitamin D. No other MS meds.
E. 19
Thank you in advance to anyone completing this survey.
-Diana
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B) 4 Struggle with the heat/walk with cane/wheelchair only on toughest days
C) 4 Fatigue most of the time/difficulty with walking/standing for more than 10 minutes
D) Supplements (D3, adrenal and more), Exercise, School (cognition), gluten and sugar free diet, Wahls Protocol. No MS "meds" as I don't want any "immunosuppression."
E) At 15 years
I truly believe that purposeful, progressive exercise can be very helpful. Also, diet seems crucial in having caused way too many problems in the population. It's challenging to strive for healthy habits when we have to keep re-inventing ourselves and going against the current standards which need a lot of work still.
1
1
copaxon and naps
over all do not have symptoms worth mentioning
5
4 SLIGHTLY BETTER NOW THAT IT'S SPRING
DMD'S, 600IU D3, REST BREAKS A COUPLE TIMES A DAY.
AT LEAST 12 YEARS
7- couldn't walk, vertigo, double vision, only lasted a couple days, has occurred twice
4- have to us a cane at all times, if it requires a wheelchair I'm not doing it
Taking Tecfidera since nov 2014, and LDN for 6 years. Not real good at following a good diet of taking my supplements though when I was I felt much better.
14 years.. I'm 30yo
B) 5 when having a flare
C) 2 -- left side "funky", off-balance, brain foggy, "twitchy" and spasms daily, but tolerable. Fatigue is sometimes HORRIBLE, though.
D) 250mg Lyrica, 5000iu D3, a super B complex vit, and 20mg Celexa, mostly local vore/organic diet, stay as physically active as possible.
E) 10 years for the worst of it, but symptoms started in my 20s.
-Lynette
B.) 6
C.). 1
D.) Vitamins + supplements, paleo-ish diet (lots of veggies, fish, and some meat. No MS meds. Have been on prednisone and various meds in the past.
E.) 14
B) 7. Use a walker and a wheelchair
C) 5
D) watch diet, exercise with an OT and a PT. rest between chores, occasional nap. I use Tylenol, and vitamin D. I am on Neurontin and Ampyra. No MS meds.
E) 19 years
B. 8 (wheelchair bound, need assistance transferring)
C. 8
D. Rutoxin, Baclofan Pump, Tizanadine, Occasional Steriods, Vitamins
E. 19
B.) 6 In a wheelchair and plagued by spasms and fatigue
C.). 7 gets worse each time I fall or get stressed
D.) Gabapentin alternated with homeopathic; regular rest; minimal exercise
E.) 15
B.) (now) 6 (always use a cane out of the house, have a mobility scooter for distances of more than a block, left leg almost never lifts high enough to get up stairs & have a dymamic AFO on that foot.
C.). (see B).
D.) No DMD, Modified yoga every other day, PT exercises almost every day. Mostly gluten free (also am mostly vegetarian) vitamins: D3 5000mg, VitB, COQ10, magnesium, multi, glucosamine. Also consume turmeric with honey & yogurt every day. Anywhere from 45 min to 2 hr nap every day, small dose of ginseng every day I work for fatigue.
E.) Serious symptoms since pregnancy with second son (in 2007).
B - 9 - coulddn't do anything without assistance
C - 8 w/chair outside home walker inside
D - Gilenya, Baclofen, pain meds. physio 2 times a week.
E - 15+
Now what are you going to do with all the responces? Da a graph or chart showing % or what?
B) Quadriplegic -
need total care
C) taking Baclofen,go to PT and OT 2x a week and try to eat a healthy diet.
The best thing we can do is to keep a positive attitude. Keep your mind active and surround yourself with people who understand you.