Overwhelmed : I'm soon to be 57 and have... - My MSAA Community

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Overwhelmed

I'm soon to be 57 and have just been diagnosed. I'm finding all of this a bit overwhelming. Just trying to find my way right now, any guidance is appreciated.

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Hi this is a hard diagnoses to swallow all at once I have had MS for 13 years I am 58 years old what happened with me is I read up on MS which is a good thing to do. When you have a Doctors appointment write down and ask all the questions you have for your doctor. Take it slow and easy. But listen to your body if you feel something different happening write it down.

Good 😊 luck to you!

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The one thing I have going for ME is knowledge. I worked in neurosurgery for 8 years, so I already know a lot. You just don't ever think its you that you need that knowledge for.

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Some times it is a good thing to know what's going on and sometimes it can be more challenging. But it seams that you will be better than I was because I had know idea what MS was all about.

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kvw_skw with your knowledge, is there hope or not for us who are older (70)?? I get mixed answers and just about to throw in the towel!

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Hi @agapepilgrim ,

How have you been feeling since you started tapering your SSRI?

Lisa

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@Nom-De-Plume not much different. I am no more depressed than when I was on it. When primary care said to taper it, I just chose on my own, to taper of to zero. I am depressed, ever since I had to lose my sweet little Mandi, even went to grief counseling, but when she said I needed a psychiatrist, I realized my depression was much deeper than losing Mandi. When I started researching the meds I was on (about 12) and realized all the withdrawal symptoms were the same symptoms caused by MS, my brain decided to cold turkey all but 2 of them, I am shocked I feel no different other than my regular MS symptoms. And almost all the meds I was on warned of loss of cognitive abilities, which I knew I didn't need since my last MRI showed more loss of cognitive abilities (besides actually experiencing it daily), it seemed logically to stop all meds that caused decreased in mental awareness (which all psychotic drugs do). As usual, I take an extra mile of word to answer a simple question. Going off my SRRI, which I was on for 17 years, shows no negative withdrawal symptoms! I have decided to change primary care doc because I don't want a lecture from my current one, who doesn't seem to care anyway, I think I should start with a new one (after 10 years), and not even mention all the meds I was one. I am just keeping my Valium and Restoril at this time (since the request for the latest DMT has not been processed). I am seriously considering cancelling it because my MS symptoms have progressed in the last 7 years in spite of DMTs, Just gonna quit feeeding the pharmaceutical hungry greedy beast system it has become. Started essential oils to help with mood and sleep. Maybe that's why I am not having major withdrawal symptoms. One day at a time, and praying that my Father will help me make the right decisions. May He lead you, also, whatever condtion your body is at this time.

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@agapepilgrim

I am so glad that you didn't have withdrawal. I became so profoundly fatigued that I couldn't seem to wake up fully no matter how much I slept--which I thought was the MS of course. Then new onset panic attacks. Never been so sick in my life. That is why I cautioned you. I didn't want you to go through that. I respect your decision and am so glad it worked out. Blessings to you!

Lisa

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@Non_De_Plume my fatigue is so great I never want to get out of bed and that is with 250mg Nuvigil every morning. I was getting up to take Mandi out several times a day; now I am motivated to get up to make sure my husband has something healthy to eat (if not he will live off subway sandwichesand his health at 80 and 2 strokes I want healthy foods for him). When he is out of town or I have made him soup to last 3 days (or casserole) I simply stay in bed for 3 days at a time. Now this horrible nausea has set in, and everything makes it worse. The fatigue has been there for several years. The nausea started 5 days ago. I got up today and got dressed because we are in line of the eclipse- one day at a time. Frank vacuums, dies laundry and dishes, but the clutter is terrible and the dusting is 1 yes past due. I thought going off my meds might help me but absolutely no change in anything. Thanks for caring. My devotional book for today said "God will finish the good worK he has begun in you" so I am just here. Don't even bother with my FB friends or texting friends, just you guys. I am so done with all this. I hope God will agree with me soon, or stop the nausea and give me some energy. Not a good day. My left eye is so bad this morning I hold it closed. I thought I could keep up sense of humor like I've handled my health in past but this is too frustrating. I need to stop complaining so much. My grandma used to say "if you can't say something good don't say anything at all." Have a better day.

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@agapepilgrm Well, you seem to be keeping your sense of humor. 😊

I certainly hope you are feeling better sometime soon.

I know you are a believer so I will share that, while my health has declined, I feel my faith has strengthened because of it. A different kind of healing. I'm still scared to death of further decline, but at least there has been a silver lining in this. I'm sure the same is true for you. That doesn't solve your/our dilemma, ....but it's nice to think about.

I'll let you go so you can rest! Glad you're keeping in touch with all of us! πŸ˜€

Lisa

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Nom_De_Plume yes I at peace; it's just the carnal surface me that gets so angry, crying, etc etc. I am watchingthe eclipse live on October at NASA site and to know the moon is traveling 2300 mph and stays in orbit, and then allow something so small to block our view of something as powerful, huge, burning ball of fire, and it keeps moving and the Sun comes back in 2 minutes, who am I to questionor doubt that God can control every minute of my life, my body. He controls the sun, the moon, and He wants me so badly He sent His Son to this dreadful valley so I can know His joy and His peace - how could anyone doubt He is in control!! And to know in about an hour or so We will see the same power unfold right at our home in KY??!! It makes me feel so small, yet so loved; so ashamedof my complaining, yet so thankful He choose to live me! What would happen if the sun didn't reappear? Destructiof all life I suppose because we cannot live without the sun. Neither could I live without the Son. Maybe, as the moon, MS symptoms blocks my view of the SON, my faith tells me without a doubt, the darknesswill pass, if not this life, then the next. But we are still in human bodies, so I complainand cry over pain, etc etc and it so relieves that to vent to people that will not judge me for my temporary loss of the view of the Light. This day is very uplifting to me, with the lessons I am hearing from our favorite Voice!

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So beautiful @agapepilgrim ! πŸ•Š

Yes, and to think the Son took on the suffering he endured out of love for us, as a ransom for all of us. Such love! ❀️

I am moved by your witness!

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Yes there is hope, always.

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My neurologist said I asked to many questions and didn't have time to answer, had other patients. Take my advice or not, it's your choice, see you in 3 months. Ugh! Why do we go?? I just keep getting worse even with the DMTs he has tried! 2 neurologists told me at my age (70) just letMS run its course, too late to help. This one says let's keep trying. (Why, so you can keep making money? Every MRI in last 7 years just shows more progression. And I tried going off meds and do the MS diet. Didn't help, but the diet killed my appetite. So sick and tired of veggies and fruits!

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I'm do new to this, I just got my diagnosis, but you can't stop. I'm know it's hard, but you must have family to carry on for. If you don't like your Neuro find another one. And if you feel your Neuro is out of line report him. He took an oath to help and treat you.

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@kvw-skw This is my 4th neurologist. I told him first visit in January he is my last. If he can't help me, or give me hope, or help me cope with my symptoms, I am leaving the medical field and their "oaths to help." The first one 7 years ago said there was nothing to do at my age, the 2nd one said there is nothing to stop the progression of MS brain damage, just accept it, be prepared for mental decline, the 3rd one said since my insurance didn't cover MRIs at HIS hospital, he couldn't accept me as patient anymore. I went to an Aubagio event, a person attending insisted her neurologist would help me, so I told myself, okay, I will try one more. So here I am with him, the 4th one, and he tells me since I developed allergy to Aubagio, then Capoxone, it was my choice to try Tecfidera because at my age (70), he wasn't sure of damage it would do since my immune system is highly compromised, he said it was my choice to take another 'DMT at this point. Since 3 of the 4 have basically told me same thing, at 70, I am not looking for another one. It is simply too expensive, and breaking our budget, and my husband has already said he is buying a motorhome and traveling if something "happens" to me. And I watched the burden my daughter took on to take care of my own mother in the nursing home for 4 years before she died (I was too sick at the time), I don't want to do that to her. So, I am not fighting anymore, not giving up, just taking one day at a time. My last fight is trying essential oils, since I cant afford CBD oils, which everyone is finding relief, but too expensive for it. I asked my current neuro about CBDm and he simply said, don't tell me about it if you choose that route! Wish it was approved in my state, but, my soul is taken care of, even if my body is not. "God is still in control, and He will remember His own" I receive comfort in the song "I do not know what lies ahead, the way I cannot see; but One who knows and undertands will show the way to me." I think I will sign off now and see if that song is on YouTube. Gone are the days when I could play it, and other songs, on my sax and lose myself in expressing music. Just another loss among many! But "nothing can separate me from the love of God."

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I think it's time for a new doctor who says you can't do anything, he sounds like the doctor I had that said I had woman problems guess what I had MS and I had to diagnose my self. My saying is if they don't help you it's time to move on.

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@ssdw1958 lmho--yep I have woman problems and her name is Judi! I was misdiagnosed with various diseases, syndromes, viruses, for the past 25 years, I amo moving on - and leaving the medical field behind! Unless of course the latest virus comes back next week as cancer. That one I must deal with oncologist help. But I am going straight to a special cancer institute, not any of these, well, I think it might be.....As I have said starting with the temp blindness at 17 misdagnosed, up to the 70 yr old being told MS in the brain at your age, along with your PTSD, cannot me treated due to brain damage with years of scar tissue, there just isn't anyplace to move on to! But, that's okay, I fought it for 50 years, and current neuro said I was very very strong person to keep fighting that long, stay sane, and walking and talking. But the stories on here are almost as inspiring as God's Holy Word!

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All I have to say to You keep on going girl friend, I like that you are so Positive your not done until your really done

😎

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Not done till I can no longer sing "I'm green side up"!!!love that song!

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I have to let you know I should be a sleep right now but my sleep pattern is so messed up. I can't stand this so I have to try to get some sleep 😴 but I do want you to know. There has to be a real doctor that can help you. So goodnight for now. And keep on fighting

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kvw_zkw welcome but wish u didn't have to join us.

Overwhelmed is a natural response. Knowledge is power and so is the support from this site πŸ‘Š

Did u have any specific ?s

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kvw_zkw i just read your reply "worked neuro surg"

you may be familiar with worst cases and the neuro anatomy and have connections to neurologists/neuro surgeons. No doubt much you can share with all.

the experience of MS is very individual and personal. Here to share those stories πŸ’

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kvw_zkw

Welcome to a very helpful and the most understanding group I have found. Wish I could be more help, but one thing I've learned...take your time, don't try to learn everything at once and become overwhelmed. As one of my college professors put a large problem to the class - Q: "How do you eat an elephant? A: The way to eat an elephant is one bite at a time." Thanks to her I've never forgotten this and found it the best thing I ever learned in college.

When I finally had the correct diagnosis in 2015 my first feeling was relief, then fear, then after reading information, updates and finding this group I become more educated and less fearful. My neuro has been very helpful answering my questions and telling me that now is a better time to be diagnosed because of all the treatments available.

Best of luck on your journey

Jennie

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@kdw_zkw

Hello and welcome! πŸ‘‹πŸΌ I'm glad you reached out. This is a wonderfully supportive group where you can ask or say just about anything and you won't be judged. You are among friends.

You have received great responses already! I would underscore a couple of things: (1) take it slow. The diagnosis and the (potential) implications are a shock. It can take a l-o-n-g time to process it and adjust. The emotional challenges can be as big as the physical ones.

(2) the folks here understand because we've gone through it all too. We've lived it. We get it in a way that the best-intentioned clinicians and academics just don't. You can't put a price on that kind of support!

No doubt you are exploring all of the MS societies, associations, and the support services they offer. That's key too.

I would say that starting a DMT right away is important. It is interesting that, given your age, you are being diagnosed now. There's been discussion lately here around age as it relates to DMT effectiveness. Would be interesting to know if docs think you have had MS a long time or if you have new onset of disease, and what the treatment plan is.

That's my 2 cents for now. 😊

More to follow! Lol.

Keep us posted, please, on how you're doing, treatment plans, etc. when you can, and if you're comfortable doing so!

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@kvw_zkw

Hi there! Just following up... has your doc decided on a treatment plan for you yet?

Lisa

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kvw_zkw hi and welcome. What kind of ms have they labelled you with. I am 61, I have PPMS, live in the uk, never been offered any treatment, over here you grin and bear it, that's why this forum is so good for me, better than any treatment. There are some very knowledgeable people on this forum who keep us on our toes, and give us new links etc. I hope you can stick around, being in the profession that you have been in, you will have some good insight, which when you feel more comfortable you can share with us. I was 54 when I was dx, but they said I had probably had it 20 years or so. Whose to know? Blessings Jimeka πŸ¦‹ 🌈

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@jimeka

Hey there! Haven't they offered Ocrevus? Or is it pending approval there? Perhaps you opted not to take it? Wondering 😊

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It's not been approved in the uk yet πŸ¦‹ 🌈

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I'm sorry, jimeka . Here's hoping that 2018 will bring good news on that front.

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Welcome to the group kvw_zkw ! Sorry about the diagnosis.

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Welcome!

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kvw_zkw, here's another welcome. I agree with all the previous posts. It seems to take a long time to grasp the basic diagnosis, but then we have to gradually take in loads of information, and then begin to understand our own situations. It's going on a year since my diagnosis, and I am still adapting to this ever changing set of symptoms and the emotions that go with it.

This site has been extremely helpful to me since I can ask any question or vent a bit. I know that everyone here truly understands.

I do hope you have a good support system with friends and family. Hang in there and take things at your own pace.

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Welcome, kvw_zkw. As others have said, I'm sorry you have MS, but happy you found us. Feel free to ask whatever questions you have. If you need more information, here are some MSAA links:

MSAA general phone number: (800) 532 -7667

ο‚· Client Services Specialists at our Helpline:

(800) 532-7667, ext. 154, Monday through Friday 8:30 am to 5:00 pm, EST

Email: MSquestions@mymsaa.org

Multiple Sclerosis Information (MSi) videos: mymsaa.org/ms-information/v...

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I know when I found out 1 I found out I was glad that someone was listening to me.

2 I actually said so what medicine can I take to help me with this not knowing that I would never get rid of this. That was scary so you're not alone we all have been there.

3 this is a good place to find out what people are doing and the M S Society is a great place to have questions answered but your doctor is the best person to ask questions that's why you go to

him/her

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kvw_zkw Many of us can understand your shock and dismay on hearing the diagnosis. Take heart, relax, and understand that the essential you is still present. I was diagnosed 7 years ago the month I celebrated my 70th birthday. I am still here, still as vibrant as ever...yes I still have MS, still have all the many different symptoms (and some new ones), but I still guide the course of my life. More importantly, I appreciate the lessons I have learned in recent years. This forum is wonderfully supportive, full of so much wisdom and experience fro all who participate. Welcome to the family.

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@goatgal at your age are you still taking a DMT? I am 70, and 4 neurologists have told me after 65, there are not any DMTS that promis much help, just take meds for the symptoms. You are the first person I have met on here that is older than me, and still going strong. What is your secret??? BTW, I follow the MS diet protocols, mostly, am active at least an hour a day if possibele, and" pray without ceasing: (Meaning I have an ongoing dialogue with the Lord -sometimes crying, sometimes angry, so thankfu I an still take care of pesonal hygiene and His loving care. Take whatever advice you care to share! You are very blessed!

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agapepilgrim You are correct. I am indeed blessed and filled with gratitude for my amazing experiences. I do not take DMTs because as you have been told, they have not been trialed on seniors, and because seniors may respond differently to DMTs than younger people (though I do take blood pressure meds). I don't have any secrets: I do some exercises for strength and balance, I walk everywhere possible, avoid sugars, highly refined flours, and red meats. I make my own sourdough bread and grow many of my own vegetables. I buy organic and GMO free foods whenever possible. But this is more or less the way I have always lived. I also recognize the blessing that my MS has been stable since diagnosis seven years ago.

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@goatgal you are blessed. Sometimes I get frustrated at God because of all my ailments! Your diet is similar to mine except the sourdough bread. I am very allergic to wheat moths, so I limit wheat now. But love sourdough bread, just can't eat it anymore. Thanks for the advice. I don't know why my MS has suddenly (well last 3 years) has progressed so rapidly. I have had NS for 50 years (first bought with optic neuritis when 17 but not diagnosed til 53 years later. Suffferd with a lot of pain headaches, poor balance, cognitive fog (all diagnisss as fibromyalgia), but can't cope anymore and nothing helping. Trying essential oils now as last resort, but I think like you said these DMTs not been tried on us senior citizens so why make things worse? The God of the mountains is the God of the valleys" so surely he will get me through this one, also. I am glad you are so blessed!

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kvw_zkw sorry about the diagnosis. My advise is to read and fight this disease with all you've got! If you're a candidate for a DMT, try it. My third med was my "charm". No major relapses since starting it and progression seems to have stopped. Ask questions here. There is a lot of experience and encouragement here!

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Hi, Juleigh21 , curious to know now which DMT you're on! :) Thanks!

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Nom_De_Plume I just had dose 20 of Tysabri. I did Copaxone and Tecfidera before that but kept relapsing and getting more lesions. I get 3 MRIs in September. The doc feels that's the true answer if a DMT is working or not. I honestly expect no new lesions for the very first time!

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@juleigh21 Ooooh great! We'll be anxious to read your follow-up post after your September MRIs!!

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Well you are certainly in the right place. Welcome to you and sorry about your diagnosis. My suggestions would be of course to research MS, but don't overload yourself with information. Select one or two sites that you are comfortable with. Are used this MSAA site and the mayo clinic as research sites which led me here! This is a great group, feel free to ask questions or chime in with others comments. I'm 69 now, and I was just diagnosed last year at 68. Prior to that, I have been a very active long-distance bicycle rider, averaging 150 to 200 miles a week. Now I feel like the original couch potato. I'm a little bit more active than that but not much. Keep on coming back here. Lynn aka Calfeechick.

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It's hard when you are use to moving and doing things and then bam. I am trying to keep.movin. It's my motto now.keep movin.

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I understand your frustration! Although my MS is in remission I have been in a boot for a year due to stress fractures from osteoporosis! It's hard not to be able to exercise and be active. PT has really helped me. Just do what you can, and remember, other people have it a lot worse! That's my motto, "things can always be worse!" We have to count our blessings. Hang in there, and find things to do that make you happy. If nothing helps, just eat some chocolate.

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Welcome. I am happy you have found this site. Great one. :)

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BREATHE... Don't worry, be happy, and know knowledge is power!!! 30+ years for me, living alone and thriving!!! Little by little & one step at a time... FAITH NOT FEAR is the motto by which I live and it serves me well!!! xo Cj (pronounced Seejay...)

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Welcome. Sorry why you're here but happy you found us. I was diagnosed April 2017 at 65 years old. My Neuro asked if I wanted to wait and see how it was progressing or treat it aggressively. I chose to attack rather than wait. 2 months later my MRI showed 4 new lesions so it was progressing pretty fast. 2 weeks ago I had no new lesions. I've jusst finished my 3rd month of pelegridy. I can't promise it worked but I sure hoping that the difference. God bless you on this new journey in you life.

Donnie

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Welcome!!!

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Sorry to hear you have MS. I am 58 and just learned I have MS 3 years ago. It is overwhelming. I was just glad to find out what was going on.I knew before the Dr. Trying to convince someone that there is something truly wrong is very frustrating. With this group you will find many that are in the same boat. We are all paddling together down this same river called MS. This group is a great source of information.

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Welcome welcome! You will learn a lot on this site. It's been great for me to feel a am not alone with the MonSter. I read all I can on what's happening in the MS world. When I was diagnosed years ago there were 3 drugs for MS. Now there's a whole lot more DMTs. Exercise has also helped me a lot.

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Hi, I'm Sally - I'm 59 and have had MS for almost 30 years. I am actually in remission although at my worst I was using a walker. I have changed my diet to vegetarian, mostly fruits and vegetables, and never felt better. There are lots of treatments available now that I didn't have, so hang in there! Get lots of rest and avoid the heat, and accept help if you need it. Also eliminating stress will help you a lot.

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Yes, I have changed my diet as well, and I do feel it makes a difference

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If you don't mind me asking what have you changed about your diet I have been given the chance to start Ocrevus and i figure I should get the best out of having this medicine I need to change a few things in my life and diet is one of them besides. Exercise.

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Stay away from processed food. More fruit and veg, fresh or frozen not canned. Reduce salt, more water. I do a lot more cooking from scratch.

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Thanks if I want this to work I need to work for it. I think I need to also keep A diary of what I am doing.

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That would be a good idea

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I have had ME for 12 years. The best advise I got was from my younger brother who is a RN. He told me to sleep every chance I get. It works. I will take a nap every afternoon and it keeps me charged up until I go to bed. Try this it really works. I have a great care giver, my wife. that makes all the diff. in the world. Good luck.

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I am 58 and got diagnosed 3 years ago. My first 2 years I felt like an "MS fake" because I had little to no real symptoms with the meds. 2017 it changed. I have mostly just gotten weaker in my legs and my mind fumbles so much for words. I just started using a cane about 6 weeks ago.

Definitely write down questions to the doctor. Memory can be a bit jumbled so write them down! Make sure he/she speaks to you in English and not "doctor-speak". You need to understand what is being said! You are the one who has to live with it.

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