Which treatments/drugs/diets do you use to battle your MS?

Which treatments/drugs do you use to battle your MS? Also please post :-

Offically Dx?:
Which drug:
How long:
Relapse avg Rate before drug:
relapse avg Rate after:
Age:
Age that MS started:
Sex:
How do you find the treatment? side effects, effectiveness etc:
Special diet?:
Your EDSS (if you ok sharing):

I know there is another thread like this but I really wanted more information. I have been reading journals on MS and some say the treatments work and others seem to think there is no effect long term on MS. These treatments are harsh to the body but so many people say they work. I just wanted to get a feel for those taking treatment and those not and how you are doing either way.

Return to Poll

46%

 (6) 

CRAB or other treatment/ mod diet

53%

 (7) 

CRAB or other treatment

0%

 (0) 

No CRAB or other treatment/ mod diet

0%

 (0) 

No CRAB and no mod diet

13 Members voted

[jujuminx]

Offically Dx?: RRMS
Which drug: Copaxone
How long: Dx August 2010, copaxone 2 weeks later
Relapse avg Rate before drug: 8-10 yrs
relapse avg Rate after: 0 since relapse in spring 2010
Age: 48 when dx
Age that MS started: 28-29 yrs
Sex: F
How do you find the treatment? side effects, effectiveness etc: Minor site reations occasionally from daily shots
Special diet?: Low fat, avoid processed foods, sugar, additives
Your EDSS (if you ok sharing): Sorry, I don't know what this is.

[Mike_Shuswap]

- MS
- Rebif
- Dx mar 2009, DMD Aug 2009
- not really sure
- 1 for sure
-53 when dx
-1st noticed at 52, probable sx for 10 - 15 yrs
- M
-not too thrilled about self injecting, but I have to try my best to slow down the disease
- drink less beer, try to eat a healthier diet
- never had EDSS tested

[bubbles_04]

Thanks for replying the EDSS is Expanded Disability Status Scale it's rated like this :-

0.0: Normal Neurological Exam
1.0: No disability, minimal signs on 1 FS
1.5: No disability, minimal signs on 2 of 7 FS
2.0: Minimal disability in 1 of 7 FS
2.5: Minimal disability in 2 FS
3.0: Moderate disability in 1 FS; or mild disability in 3 - 4 FS, though fully ambulatory
3.5: Fully ambulatory but with moderate disability in 1 FS and mild disability in 1 or 2 FS; or moderate disability in 2 FS; or mild disability in 5 FS
4.0: Fully ambulatory without aid, up and about 12hrs a day despite relatively severe disability. Able to walk without aid 500 meters
4.5: Fully ambulatory without aid, up and about much of day, able to work a full day, may otherwise have some limitations of full activity or require minimal assistance. Relatively severe disability. Able to walk without aid 300 meters
5.0: Ambulatory without aid for about 200 meters. Disability impairs full daily activities
5.5: Ambulatory for 100 meters, disability precludes full daily activities
6.0: Intermittent or unilateral constant assistance (cane, crutch or brace) required to walk 100 meters with or without resting
6.5: Constant bilateral support (cane, crutch or braces) required to walk 20 meters without resting
7.0: Unable to walk beyond 5 meters even with aid, essentially restricted to wheelchair, wheels self, transfers alone; active in wheelchair about 12 hours a day
7.5: Unable to take more than a few steps, restricted to wheelchair, may need aid to transfer; wheels self, but may require motorized chair for full day's activities
8.0: Essentially restricted to bed, chair, or wheelchair, but may be out of bed much of day; retains self care functions, generally effective use of arms
8.5: Essentially restricted to bed much of day, some effective use of arms, retains some self care functions
9.0: Helpless bed patient, can communicate and eat
9.5: Unable to communicate effectively or eat/swallow
10.0: Death due to MS

I'm sorry if its too graphic (please delete mods if you think so). If you don't know your EDSS you could guess? I would guess mines between 1-2.

[TLC_31]

Offically Dx?: Yes, early 2004 about my 34th birthday.
Which drug: Avonex.
How long: since April 2004, shot #401 this weekend. Did take seven weeks off in fall 2011 to try Gilenya, which I did for 19 days.
Relapse avg Rate before drug: Difficult to quantify, because didn't realize what they were at the time, maybe one every year or two.
relapse avg Rate after: Two relapses: summer 2004 and early 2006.
Age: approaching 42
Age that MS started: probably age 24
Sex: Still pretty good. Don't need the Viagra, etc.
How do you find the treatment? side effects, effectiveness etc: Probably effective. Side effects manageable. Hate needles, but the Gilenya was not tolerable and possibly dangerous for me.
Special diet?: I do take 2000 IU Vit. D3 each day.
Your EDSS (if you ok sharing): If I've had it tested, I don't know, but probably between 0 and 2.

[JaneK1975]

@TLC_31 Hahaha! You are awesome.

[COBOB]

Offically Dx?:
Which drug: Copaxone
How long: 15 months
Relapse avg Rate before drug: 2/year
relapse avg Rate after: ??
Age: 50 (as of Sat 1/21)
Age that MS started: 48 (diagnosed)  5 years of symptoms prior
Sex: M
How do you find the treatment? pretty good via the Rocky Mountain MS Center
Side effects, effectiveness etc: Time will tell
Special diet?:  No
Your EDSS (if you ok sharing): 2.5 or 3

[Deb61]

Offically Dx?:Yes-  2008
Which drug: Copaxone
How long: almost 4 years
Relapse avg Rate before drug: Not sure-- felt bad all the time
relapse avg Rate after: Not sure- guess 2/yr
Age: 50 (46 at diagnosis)
Age that MS started: 30's
Sex: F
How do you find the treatment? side effects, effectiveness etc: Doctor gave me videos and stuff to read about several drugs.  The side effects are zero for me.  I really don't mind the shots and like the medicine.  Shared Solutions has been wonderful and have a program that helps me pay for it.  I have to pay all of the costs until it reaches a deductible, so I was thrilled that they pay $1500.  Unfortunately, my latests MRI showed more lesions and my neuro said that the drug is failing me.
Special diet?: No
Your EDSS (if you ok sharing): Don't know but I walk without a cane or w/c at present.

[bubbles_04]

@TLC_31 .... that did make me smile :)

@ Deb61 will you be trying another treatment? I hear that copaxone only works for 30% of people (I think the other treatments are around the same? but hopefully a different 30% of people :))

Thanks for all the answers so far, I'm loving it, its really helpful for new Dx and limbolanders.

[kwarendorf]

Offically Dx?: 10/03/2011
Which drug: Tysabri
How long: 2 months
Relapse avg Rate before drug: 6.66 years
relapse avg Rate after: 0
Age: 52
Age that MS started: 32
Sex: M
How do you find the treatment? side effects, effectiveness etc: No side effects. Too early to judge effectiveness
Special diet?: None
Your EDSS (if you ok sharing): Don't know it.

[Deb61]

My neurologist was going to put me on Gilenya.  Long story short, I am seeing an MS specialist (who've I've never seen) to make sure that the Copaxone has failed and Gilenya is right for me considering that it lowers the immune system.  I've had positive tests for TB (latent form--not active).  TB can become active if the immune system is lowered, and I don't want to give anyone TB, not to mention get a TB infection of the brain.  

I couldn't tolerate the TB medicines.  I started tremors and even got to the point where I couldn't lift my fork to eat.  TB medicines and MS DO NOT go well together!!!!!!  

I hate MS.  I wish there was a cutting-edged medicine that doesn't lower the immune system . . .

Are you deciding on a DMD?  

[Needhelp16]

Dx- July 2011

Which drug- copaxone, but soon switching to rebif

How long- 5 mos

Relapse b4 taking drugs- 1x in 7yrs, then once every yr thereafter

Rate after drug- seems like I've have been in a relapse for the last 3 months.  I am now bedridden.

Age- 32

Age MS started- 10 yrs ago

Sex- female

How do you find treatment- talking to my neuro, and doing my own research.
Side effects are minimal.  For me the meds have done nothing, thus switching soon to Rebif.

Diet- no special diet

EDSS- Haven't had one but will at next appt in 2the weeks.

[jenphilly]

Offically Dx?:  yes November 2011
Which drug: Copaxone
How long:  2 weeks (January 6th start)
Relapse avg Rate before drug: 2 in about 5 months
relapse avg Rate after: don't know, not long enough yet :)
Age:  42

Age that MS started: Dr guesses 37; but first undeniable, ignore symptoms were late May 2011  

Sex: yes, still fairly often, but a newlywed... oh sorry, misunderstood - F

How do you find the treatment? side effects, effectiveness etc:  minimal side effects, already barely notice the sting; welts but gone by morning, couple spots were lumps still, waiting to see if they reduce

Special diet?: avoid gluten, limit use of granulated sugar, use raw sugar, try to avoid processed foods, more fruits / veggies / cook at home healthy approach type logic

Your EDSS (if you ok sharing): not officially tested, but will say 3.0 based on above criteria

I am also taking supplements including: tumeric, bioperine, Bioastin, Potassium, Magnesium, B12, Vit D, Vit A, fish oil, folic acid, daily vitamin without iron....  think thats it!

[HVAC]

Offically Dx?: Yes Primary Progressive MS in 2009

Which drug: No DMD on medication for spasticity and nerve pain. PPMS does not respond to traditional CRABs and I figured I have had it so long with so few lesions and no changes in MRIs. I am taking a risk and know it. Cost and needing to see a Neurologist on a regular basis to be on one is a factor.

How long: 2 years

Relapse avg Rate before drug: PPMS does not have remissions it is a steady decline sometimes very slowly as in my case.

relapse avg Rate after: N/A

Age: 48

Age that MS started:  early childhood I have always had brain stem damage they just did not know why. No MRIs in the 1960's

Sex: F

How do you find the treatment? side effects, effectiveness etc: Lots of trial and error. Balancing between helping and knocking me out.
Special diet?: I eat a very healthy diet avoiding processed foods. I have lost 50 pounds since diagnosis in 2009. I have to eat a special diet for my gastro problems from MS and stress. I have to avoid certain vegetables, fruits and beans.

Your EDSS (if you ok sharing):  I am not sure. I am doing pretty well compared to others with MS.

Alex

[doublevision1]

Offically Dx?:  RRMS

Which drug:  Copaxone

How long: June 2008 (after a brief, previous trial run with Rebif but discontinued after several weeks due to increase in liver enzymes)

Relapse avg Rate before drug: 3 per yr

Relapse avg Rate after: 1 every 2 yrs

Age: 44

Age that MS started: first symptom at 38, dx'ed at 39

Sex: F

How do you find the treatment? side effects, effectiveness etc:  relapse rate significantly reduced; no discernible side effects other than minor, transient site reaction

Special diet?: No, other than scaling back calories when activity level decreases

Your EDSS (if you ok sharing): 2.0 maybe?  can't remember, will have to look up an old report of mine.

[kelly97]

Offically Dx? Yes, MS
Which drug: Copaxone
How long: 15 or 16 months
Relapse avg Rate before drug: NA - just a slow progression downward
relapse avg Rate after: NA - just a slow progression downward
Age: 39
Age that MS started: 36
Sex: F
How do you find the treatment? welts, nodules
Special diet?: Only meat I eat is fish & chicken
Your EDSS (if you ok sharing): 4.0

[maxthecat9196]

Oops, I shouldn't have voted.  Sorry.  I was dx in July this year, but at the moment my diagnosis is unsure.  I hope I didn't mess up the poll too much.

Tammy

[littlelawbear]

Offically Dx?:  Not yet (CIS)
Which drug:  Copaxone
How long:  Seven months
Relapse avg Rate before drug:  Only one attack
relapse avg Rate after: No attack since first one
Age: 33
Age that MS started:  CIS at 33
Sex: F
How do you find the treatment? side effects, effectiveness etc: The injection site reactions are bothersome but I have no other side effects.  Helps with my fatigue.  Plan on sticking with it - it seems to be working!
Special diet?:  Nope
Your EDSS (if you ok sharing): 0.0

[bubbles_04]

Hi Deb61, No I'm not deciding on a DMD yet, seeing the neuro next week so I'm still in limboland. My PCP told me I have MS but I'm waiting on the neuro before anything else happens. I just wanted to get some information from people who are or are not on treatment and how its working out for them. There is alot of mixed reviews out on these DMDs and I wanted to see what people thought of them, were they helping them etc. I'm still so confused over it all. I'm still just learning right now though.

Thanks everyone for your answers this is just great and totally helpful to me and I'm sure to many over people. Please keep us updated on your on going treatments. Also I hope more people post there info its really helpful :) thanks to you all!!