198419 tn?1360242356

MS and Chronic disease/illness Management

Our members bring up the best questions! A new member's posts, Kckc11, inspired me to start this discussion. Though our good member advice is found throughout all responses, I'd love to see some highlights in one discussion. Our daily practices will change, but knowing it will change, would you be willing to add some that currently work for you? Like a little snap-shot?  Feel this will help someone, somewhere in our forum family or even a lurker from w w w.

For those w/out a dx, just leave off the disease management.....

Here are the magic 3 to me: Disease management? Symptom management? Lifestyle management (include coping techniques)?

Disease:     On a DMD.

Symptoms: Not on MS symptom management at this time. In the past, on baclofen which saved me from endless spasms and sleep meds that rescued me from neverending zombieland. I currently take Naproxen each day for chronic neck pain associated w/HNPs. Keeping this to snapshot - I'll stop there because I'm in a much better spot than I have been in the past.

Lifestyle: I try (many days harder than others) to get some sleep. I sip coffee throughout the day until about 2 - 2:30 to keep moving. I take days off work to manage things I can't get to regularly. And, I try to delagate what I can't do - that's hard for me because I feel many things are "my job" as a Mom and Wife.  I try to steer clear of environments where I'll be uncomfortable for a variety of reasons depending on how I'm feeling. I don't look down to avoid buzzing, and I try not to get ahead of myself among other things.

Of course, I include a daily dose of you all each and everyday. Your right up there with my coffee!

Who else?
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1253197 tn?1331209110
Great suggestion so here goes from me

Disease management
Oral drug trial in UK (similar to gilenya i am told) Still early days but i am positive about it.

Symptom management
Night time - to help with sleep and tingling - Low dose of gabapentin (300mg) and 5mg of amitriptylin

Eat healthily - low saturated fat, less red meat than previously, lotsof fruit and vegetables
Exercise twice weekly at gym and swim twice weekly. Have a massage from time to time.

Have learnt to say no without feeling guilty, turn down invitations if too tired, have a nap when my body tells me I need it and try not to "sweat the small stuff" as stress does me no good. Live in the moment and try and enjoy every precious day.

Connect with my friends on the forum!!!
Helpful - 0
338416 tn?1420045702
Disease management: Betaseron

Symptom management: Baclofen for spasm, levitiracetam for myoclonus, acetyl-L-carnitine for fatigue.

Lifestyle: low-fat diet (gallstones) avoiding dark leafy greens (DVT and warfarin) trying to lose weight so managing calories.  Problems with legs and fatigue, so haven't been exercising.  When I'm feeling better I work out three times a week - but it's been a long time since I was able to do that.
Helpful - 0
987762 tn?1331027953
I'm a probable MSer, technically still in limbo until dx by a neurologist but i thought i'd tell you what i do whilst in limbo because dx or limbo you still need to be doing something!

DISEASE MANAGEMENT: No DMD available to me yet but because I believe in 'brain plasticity' i still do daily patterning when i'm not in an episode and do what i can when i am. I would still actively focus on re-wiring my brain and re-training muscle memory even if I was on a DMD.

SYMPTOM MANAGEMENT: No specific MS type drugs to target sx at the moment, just anti hystamine and nurofin, i'm trying to wait it out again for as long as I can, lucky for me I have high tollerance of just about anything. My theory maybe flawed but from experience, once i start a drug it's more difficult to tollerate the sx when the drug wears off. I also feel until i'm officially dx masking the sx isn't such a good idea for me, i'm not going to persue a dx with as much vigor as I should be (already i'm bad on that), masking my problems will make it even easier for me to avoid doing the right thing, for me.

LIFE STYLE: Through my kids developing years my family have shifted towards 'healthy' foods but indulge if and when i feel like it. I've always been sporty so we're an active family, though as i've lost mobility and prior skills the sports i love have either been adapted so i can still do it or i've given it up. I do yoga and stretching every day and I meditate or nap everyday too. I laugh a lot, a lot! I find the funny in the most mundane, i enjoy life no matter how it comes and i'll continue to be that way as I know no other way to be!

Helpful - 0
198419 tn?1360242356

Who else?
Helpful - 0
1318483 tn?1318347182

Well, I am officially on grandbaby vacation right now, but really wanted to participate in this!  :)   What a wonderful idea, Shell!  Thank you!

I am undx'ed with MS, though I have acquired a few different blanket neuro disorders/diseases dx.  My pcp feels I have MS, my neuro feels it is a Hereditary Neurodegenerative Disorder.  I don't know what I think...lol

DISEASE MANAGEMENT:  No DMD for me.  I do play different mind games to hopefully help in my cog/memory issues.  

Orphenadrine Citrate and Baclofen for spasms and spasticity 
Propranolol for tremors
Lyrica for nerve pain
Oxybutynin for incontinence 
Senna lax and dulcolax for constipation
Diclofenac Sodium for back pain
Sertraline and Doxepin for nerve pain and depression
Furosemide for water retention 
Potassium to replenishment that Furosemide takes
Cranberry tabs for chronic UTI's
Restasis and tear duct plugs for dry eye
Qvar for breathing difficulties from muscle loss around lungs (?)
Tylenol 3 and Vicodin, as needed for pain

LIFESTYLE:  Elec hospital bed with APP pad (?) for better sleep.  Walker, wheelchair, scooter for mobility (no more Harley's for me right now, so I put Harley stickers on my devices, which gives opening to conversations with new people).  PT to keep muscles moving.  Moving to home state to be closer to family and friends.  Eating more fruits and vegetables, drinking more water and quit drinking soda and eating fast food.  Laughter has become a necessity and is most definitely therapeutic.  Acquiring SSDI/SSI has relieved my financial nightmare.   Moving back in with mom to help in the tail end of raising my last child still at home (single mom).

Finding this forum has changed me and has become a daily dose for me, as well!    The people here have given me hope, which I had lost.   I have been inspired by everyone here to live in the here and now, even when huge bundles of life have been dropped on my shoulders.  I learned to BREATHE.   Through my wonderful forum friends, I have found the right path to follow, which has given me peace of mind in my medical journey.   I was stuck in the "I want my life back!!" mentality and have learned to live a new life which I can be enriched in just as well, if not better.  

I have learned acceptance which has been the ultimate reward.   During this process, I went to counseling for help with this, got a huge GORGEOUS tattoo on my calf to celebrate my "rebirth" and learned to accept help and to say no when needed.  I cherish my mornings sitting outside listening to the birds while I drink my coffee, reading a book and/or visit my online family here.   

My lifestyle is still under construction right now, but I have begun to put things into motion to get me out of the house and have a better social life...I can see the light at the end of the tunnel and it feels exhilarating!   More so since I have been on vacation here (where I am moving) and am getting a taste of what is to come.  :)

Whew!  Okay, back to grandbaby vacation mode!!  I will share pictures soon!!  Well as soon as I can figure out how to do this on my iPad!!  lol!  Love to all!!  :)
Helpful - 0
738075 tn?1330575844
OK, I'll take the bait...

Disease mgmt: Betaseron
Symptom Mgmt:
Baclofen for  spasticity
Diazepam for spasms/spasticity at night.
Acetyl L-Carnitine for energy
Omega 3 for myelin protection (good for other things, too)
Cannibis (PRN) for spasms/spasticity  ( I don't use much of this)
Nuvigil:  I have a sample of this from my Neuro.  I save this for days I know are going to be long and active.
A cane or DH's arm as needed.

I do my meditation,Yoga and lift light dumbells almost daily.  On days when my balance is good, I ride my bike.

I eat organic veggies, fruit, and occasional meat when I can get it.  I stay away from fresh dairy (really lactose intolerant!), though some occasional bits of cheese and yogurt seem to be OK with me.  But that's been cultured.   I try to stay away from white sugar and flour, artificial flavors, colors.  In other words, I live by Michael Pollan's maxim - "eat food, not too much, mostly plants".

I delegate as much as I can, and try not to control a situation I can't possibly control.  I do still work 1-3 days a week, which, although tiring, is still satisfying and rewarding.

I'm a work in progress...

Helpful - 0
Avatar universal

Disease management: nothing

Sx manangement:  nothing but paracetamol and magnesium supplements for headaches

Lifestyle...........ha. Sadly fairly sedentary due to balance.

Diet is pretty much following the Swank diet.
Helpful - 0
1168317 tn?1330262837
ok here is my bit
waiting for the official dx at the moment

disease managment nothing till dx

symptom management
baclofen for stiffness and spacticity
gabapentin for pain and clonus
and naproxen occaisionaly

try to keep moving and keep occupied now had to finish work

regards bairdy
Helpful - 0
198419 tn?1360242356
Wow - thank you so much for adding on!

This proves we are still working hard against what's trying to keep us down.

Anyone else willing to share?
Helpful - 0
Avatar universal
Thanks for this thread.  It is interesting to get a glimpse at what others are doing.

Disease Management: Avonex and prednisone

Symptom Management:
baclofen, tizanidine and valium for spasticity
Celebrex (arthritis)

Supplements: Fish oil, Acetyl l-carnitine, Alpha lipoic acid, n-acetyl cysteine, glucosamine/chondroitin, Co Q 10

Lifestyle: work full-time,  exercise 3-4 days per week (spinning class, weights), trying to lose some weight, try to get enough sleep,  diet is higher in protein, lower in carbs. Interested in foods with antioxidant properties.
Helpful - 0
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