I’m a data driven person, if you want to play add the question number and your response, feel free to skip a question,
Q1 - Age you were diagnosed, symptoms that took you to dr
Q2 - RMS or PPMS
Q3 - physical impairments, ms related issues
Q4 - Medications
Q5 - Best lesson learned
Q1 55, geeked my neck ignored thought it was just a strain, pain never subsided, then I couldn’t walk straight literally bounced from wall to wall in hallway. Had eye issues I ignored blamed menopause for early symptoms. Begged pcp to look at me she said it’s your vertigo, she agrees to see me and sends me for MRI, calls me Saturday morning and says head to ER, pack a bag they are waiting for you.
Q2 RMS
Q3 daily fatigue, intolerance to heat, depression honestly I’m pissed hoping that will subside, gratefully no physical impairment except when I have relapse, I’ve had 2 legit relapses, one exasperation
Q4. Ocrevus, ModafiniL, happy pill
Q5, do your chores/ exercise errands in the morning I tire after lunch the later the more tired. Move my arse, move it or lose it, a broken ankle made me seek out yoga and tai chi for broken ankle, utube is awesome. MSAA site is phenomenal sign up for their news letter. Join a group like this I can’t tell you how helpful I have found this group, people are kind, knowledgeable and humorous.
Written by
NanaCC
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Q1: Age 55, but first went to the doctor for it at 15.
Q2: RRMS
Q3: Mostly just weakness, fatigue, can only walk short distances
Q4: Just OTC & herbals to treat individual symptoms
Q5: Pace myself -- Take the time to wake up slowly, follow a routine, only be active between 10-2 each day regardless of how good I think I feel, rest every afternoon, go to bed at a reasonable time.
I’m intrigued just otc and what herbs? My doc put me right on O, I hate drugs I try to live organically before diagnosis I only took vitamins. Please share if you don’t mind
Well, my doctor did put me on Ocrevus briefly, but he admitted that I was probably too far gone for it to help, so when I had side effects and wanted to drop it after the first two half-doses, he was okay with that.
While I do get some discomfort and aches, I don't seem to have the extreme pain that a lot of people get. Occasionally I'll take plain aspirin, and if it's too bad to sleep I'll smear my body with Icy-Hot. I've spent a couple decades now going to sleep every night with a hot water bottle on my lower back. If I don't, my right leg is very heavy, achy, and weak the next day.
For the last year, I've begun using an electric heating pad on my back for 2 hours a day. If I skip it, I wind up with severe back pain the next day. The herbs are just ones that I grew up with as a redneck child. lol. I drink a quart of turmeric/ginger/yarrow/wood betony tea 4-5 days a week [Disclaimer: These plants have NOT been proven safe for continuous use.]. I'll add other herbs to it if I'm dealing with chest congestion or having more joint stiffness than usual. My mind is blank right now on what they are; I have a list on the cupboard door to reference.
I've also rarely pushed myself any harder than I absolutely had to (no gym workouts, no marathons or mountain climbing), and my life now is quite laidback. I generally limit myself to one or two brief activities each day -- washing dishes and cooking a one-pan meal OR vacuuming the living room OR sweeping the kitchen and bedroom with a broom & dustpan. A single load of laundry takes 2 days. I limit mowing the grass with a riding mower to 30 minutes, whether it's all cut or not (and it never is!). Other than the mowing, I don't do anything for more than 5-15 minutes without sitting down for the same length of time and just resting. I do spend as much time as possible outside, although not in direct sunshine.
It sounds too simple, but it works for me. The neuro thought I'd be in a full-time wheelchair by now, but I still get around the house with just my own legs. I credit a lot of it to the fact that I was a farm girl who grew up strong, active, and outside in all weather. The progression has been slow, and I only get exacerbations every 3-4 years.
diagnosed at 48. thought i got away with it because most people are diagnosed earlier. Symptoms were mostly around confusion. My mother and sister had it.
RRMS probably secondary by now. Physical impairments: my right side is weak. trouble using my right hand. my shoulder and my Right leg are weak. I use a walker most of the time. I have a home health aide to cook, clean, wash and drive.
Aubagio and Ampyra. planning to go on Mavenclad when i can get an appeal from the insurance company.
Best lesson: exercise every day as if your life depends on it because it does. Eat fruits and vegetables in their natural state. plant based whole foods. No processed boxes and bags of "food." Drink plenty of water and get good sleep. Finally don't try this on your own, MS is not for the faint of heart or loners. Ask for help and connect with others.
thanks for the questions. Good luck on your research.
I’ve been following the Mediterranean life style I refuse to use the “D” word since the end of June. I feel great, losing some much needed weight. Outside of fish I think I am over meat. Thanks for sharing
Hey Nana, i feel you. I think and feel and sleep better and am so much more alert without meat and dairy. Actually surprised what a good effect it gave me. Yes, the D word is a 4 letter word! keep going and please share.
my husband had open heart surgery earlier this year it was the food plan they want him on, now to get him to the other side as i smell bacon cooking yes I did say open heart surgery. What’s strange I’m not hungry go Mediterranean or go home lol
Q3. I used to have numbness on my feet, pain & muscle cramps in my legs, numbness on half of my face & tongue, numbness on the tips of my fingers & fatigue. My MS symptoms have almost disappeared now.
Q4. Vumerity daily, Baclofen, Modifinal & Naproxin as needed.
Q3: Now this one.....well unless I had one of those M.S. neurologists' which if any of these have you had, and which if any of these are you experiencing now lists, it may take me a long time to list. But I have my favorites. The broken vertical hold world (you have to know what pre-transistor days are, and had one of those TV's), and the walking into buildings thing, but luckily in a neighborhood full of drunks so I didn't look out of place,....
Q4: Another long one? Well MS DMT's: Avonex, Betaseron, Copaxone, Rebif, after which I was told to never do any again by my Neurologist, having watched me do Flue like symptoms for a couple years, non-stop, and as he put it, it wasn't doing me any good anyway.
Now for the rest of the drugs.....yeah, that one's too long to list. I could have it in a day or two, because I keep excellent records, almost OCD like. That's how I was trained and worked for 30+ years. BUT, after I stopped DMT's, I got down to NONE!
Q5: Best Lessons: 1) Never give up! Physically, or Emotionally 2) STOP EATING PROCESSED FOODS. I juiced my way out of over a year in a "comatose" deep dark brain fog state, juicing fruits and veggies using the cheapest electric juicer. Then made it to blender fruits and veggies. And back onto lean meats, fish, seafood, with lots of fruits, nuts, veggies...Now I hang my cane on a wall like a trophy. Walk (or at least expect to walk) at least 10,000 steps a day with a pedometer or fitness tracker always on. And all my M.S. symptom coping skills have really improved, even though my list of M.S. "gifts" is long. And it's been over 6 years since my last relapse, and my Neuro says I may be done (with relapses), and I'm not the first!
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Relapsing, remitting, or just getting steadily worse? Cant tell.
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