My MSAA Community
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I am a 32 year old chef who loves rock climbing, mountain biking, kayaking, used to snowboard professionally, married to a professional skateboarder and mountain climber, and this year I got diagnosed with MS. I have been shaky and had issues with numbness for as long as I can remember but never thought anything about it. Then in 2011 I randomly lost the use of my right arm for 9 months. The doctors told me they had no idea why and if I would ever get the use back and attributed it to a car accident I had a few months earlier and that was that. Last May I woke up and felt like I had a charlie horse in my right thigh. As the day progressed it got worse and by the time I shut down the kitchen I was dragging my right leg like a bag of bricks. That lasted for 2 months, the doctors said it was sciatica even though there was no pain and just numbness and tingling. Soon after I began getting tremors and the entire right side of my body would freeze. I have had excruciating pain in my lower spine that nothing seems to help. I got diagnosed somewhere between June and July. I went from being extremely active to barely being able to get out of bed which has caused extreme depression. The scariest was when I was in line to pick up my prescriptions and all of a sudden my whole body started tingling and then my vision went completely white. I feel like I am being cheated in life. I woke up feeling good today so my husband really wants to go climbing and I find that now I am terrified to even try to do things that used to be my everyday workouts because I am afraid of the pain. It's like nothing I have ever felt before and doctors and medicine just dont seem to help. My husband married an athlete as he is one as well and now sometimes I can't even go to the bathroom on my own. I am a chef and now I have weeks go by that I can't swallow and have to be on liquid diets. Nobody seems to understand and I think everybody thinks I am just crazy. I had an amazing life and now I am terrified of what my future will be as this has changed everything for me. Just venting

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malmarie, Welcome! You have joined the best MS group out there, if I do have to say so myself! There is no reason for you to reinvent the wheel - so ask away and jump in when you feel comfortable. You said that you had an "amazing life" and you will again! You may not be the athlete you were once were, but you will eventually find your new "amazing".

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Thank you! I am working on staying positive about things but the last week has been a little rough.

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Welcome malmarie!

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Hello Malmarie and welcome. This is an excellent place to vent. You’ll enjoy and appreciate the unbiased supports.

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Venting is always aloud here malmarie 😊 Welcome although I am sorry for the reason.

I wish I had the answers for you. But MS is a fickle thing.😡 So take and enjoy your good days as best you can!💕

Do you have an MS Neuro?😀 and they know about the pain?😕

Jes 🌠

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Yes I have a whole team of doctors. My family doctor, neurologist, neuro surgeon, orthopedic surgeon, and coping therapist all work together on me. They want to do a spinal cord stimulater but I am trying to stay away from surgery. As this is chronic they don't want to give me narcotic pain medications but the other things they have tried contain high ib profin levels and I ended up having a gull bladder attack. So as of right now I take gabapentin, flexeril, zoloft, and steroids. I am currently trying yoga and hoping for the best.

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Have you tried Ultram (Tramadol is the generic)?

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Yes I have. It helped a little but my pain doctor is very against me taking narcotic pain medications when it is a chronic illness.

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I know what you mean but I have taken Tramadol for around 15 to 20 years and never had to increase the amount that I take. It has never totally stopped my pain but has decreased it, on most days, to a level that I can tolerate.

I know that everyone’s pain tolerance is different and everyone’s response to different drugs is different though.

I tried many different treatments over the approximately 40 years that I have had MS: TENS unit, Tai Chi, Yoga plus a few opioids and this works the best for me. I was put on Lyrica about 1 year ago and it worked well on my pain but I gained 20 pounds. I stopped taking it and went back to the Tramadol last month. Some people do not have the weight gain but many do.

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Oh yea I gained 7 lbs in 7 days on lyrica so stopped that immediately. I would absolutely try tramadol or things for pain but the doctors refuse to give narcotics more than once here.

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Welcome Malmarie, you've come to the right place. When no others will understand, we will.

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Welcome, malmarie. It’s a shame MS has brought us all together, but I believe you’ll find this the best place to be if you have MS. I hope you find us compassionate, always willing to listen and share our own experiences which may or may not be similar to your own...and though we grieve and raise our fists and promise to fight another day, in the end, we all encourage one another.

I’m sorry you’ve had a rough and frightening start to this disease. I’m sure your husband married you because he loved you, not because of your athletic prowess. When my thoughts drift as yours are now, I ask myself, “What if things were reversed? Would I still love and want to be with and care for my husband if he was the one with MS?” That soothes me immediately.

Praying you have an excellent neurologist who specializes in MS. Don’t be afraid to get a second or third opinion if you’re not satisfied with the doctor you have. Log all of your symptoms and share that list with your doctor. And don’t let fear rob you of joy. Perhaps a short hike is ok until you regain some confidence? But don’t NOT DO because of what may or may not happen until you know for sure you can no longer do it. I backpacked through Haleakala for 3 days with two forearm crutches and an AFO. It was hard-excruciating at times, but I did it, and i’m glad I did. The worst part of this disease is the unknown-one day you’re ok, the next you’re not. For me, the greatest struggle is learning how to LIVE with MS. That’s a challenge we all face daily. My prayers are with you as you move forward...💕

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Thank you for the encouragement! I unfortunately have not been able to find a neurologist that specializes in MS. I live in Lansing, MI so I am still on the hunt. I am overwhelmed at the support I have gotten on this forum in just one day. I know a few other people that have it but they refuse to talk about it so I have struggled with trying to explain what is happening. Your hiking story has definitely inspired me to toughen up.

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We know how you feel! But others do not and may never get it. Do research (reputable sites) and find the definition and list of symptoms that describes MS in a manner that those that matter to you can understand.

This condition is all over the map when it comes to symptoms and how they effect us and it is understandable that others cannot quite understand. Those that care will either “get it” or will at least trust that we are not making up or exaggerating our symptoms. Give everyone time, they need to adjust just like you do.

Those are my thoughts anyway.

Oh yea, welcome to the group but sorry that you are needing to join us.

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Awesome advice, thank you.

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malmarie hi and welcome. I can only echo what everyone here has said. This is a very compassionate group of people and we are from all walks of life. We all have had to give up something. Like you, I was a avid rock climber, snow and ice climber, pot holder, skier, sailer, canoeist, the list goes on, now I have to watch someone walk my dog. As they say as one door closes another one opens. So don't give up hope, give those around you time to adjust and yourself. Hang in there, blessings Jimeka 🦋 🌈 🤗

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Welcome malmarie! It's unfortunate how unpredictable our MS is. Stay strong and keep your head up!

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Ouch. You’ve been hit hard by MS and I’m so sorry you are being robbed of so much. I I’m also real sorry you got the run around on diagnosis. So awful.

Please find a good MS dr, a regular neurologist is usually not enough.

Have you heard about Ocrevus? It’s an infusion drug that might stop disease progression. Try to get on that if you can.

As for pain, you need a pain specialist. There are several “outside the box” meds you can take that are not opioids. My current cocktail is Lyrica, Cymbalta, Trileptal, baclofen and nucynta (this is my only opioid). It was very much trial and error. While going to a pain clinic can be depressing as hell, it’s totally worth it for me. I hope you find relief soon.

I plan to try low dose naltrexone for my neuropathy son. If medical marijuana were legal in my state I would take it.

Anyway, welcome! I have not been here too long myself but I love the folks here. Very helpful and supportive bunch.

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I do have a pain doctor I forgot to mention. So far he has tried epidurals which ofcourse didn't work and pretty harsh things like meloxicam. They have brought up cymbalta to me. Qt314grl how do you like it?

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If you can avoid Cymbalta I would. It’s really hard to get off of. I just got my prescription for low dose naltrexone (ldndoctor.com) and I’m hopeful I can get off the Lyrica and Cymbalta malmarie !

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ok good to know thank you.

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Qt314grl I'm in idaho which doesn't have legal MJ but....know someone given gummie chews of MJ but also in a carecenter.So legal or not it is being used,how I don't know.It is thru a pharmacy etc. just to note.

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Oh, malmarie, it's Fancy1959. I am so sorry that the monster has attacked you so severly, so quickly. But you have come to the right place to ask questions, to voice concerns, or simply to speak to people that truly understand what you are going through. This chat room is full of some of the most caring, kind, and compassionate people I have ever met.

Please come to us to voice your concerns, vent your frustrations, or share your anxiety and depression with us. By sharing, sometimes we can help to lighten your load when you realize you are not alone in this battle. I too, was an athlete and a super active mother of three sons. I was struck down and went from playing volleyball 3 times a week and working the horse farm, riding horses it every minute I had a chance to not being able to run at all. 5 years ago I was backpacking with Boy Scouts and now I can't even imagine attempting to do more than walk across the room with my walker. Many of us walk a parallel path on this obstacle ridden, pothole field, and detoured route that Ms has laid out for us. I want you to know that although you feel that you walk your path alone all you have to do is reach out and someone will grab your hand that is walking on one side of you and will help get you through the obstacles you encounter. Fight with all you have. Look for new ways to engage yourself and find new purpose to fill your hours. Mine was helped when I found this chat room. You could write a cookbook from a chef's perspective and fill it full of your favorite recipes and easy-to-follow dishes. Think outside the box because the monster lives within the box so we must circumvent it at all cost. I wish I was closer so I could be there in person because we have much in common. Know that I'm sending you a big electronic hug through this media. Keep your chin up and please take care of yourself. I hope this helps, you can feel free to address me anytime you wish. Until we speak again please remember that together we are stronger!

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Fancy1959 Thank you so much for the kind words. It has been quite the struggle but I have found that the people on here seem to be much more positive than the few I have met in person that have had that dx much longer than me so that has been really helpful. I seem to struggle trying to decide if I should change my plans in life or push myself to achieve everything I have planned out. This year seems like it has been such a long one but then such a short span considering what the future could be. The cookbook idea is great! Thank you again for the encouragement and advice. I truly hope you have lots of good days.

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Malmarie, you have many choices to pursue to take therapies that will modify your disease and keep it from progressing. If you haven't yet found one please go to an MS specialist neurologist because they will be more up-to-date on the therapies out there. It seems like new therapies are hitting the market in waves that are never-before-seen. I just read back and noticed you were having trouble signing and Ms specialist up in Michigan. I have two ideas for you to pursue . The first one is to check with your local largest teaching hospital and see if they have an MS Clinic or if they can recommend the closest hospital with an MS Clinic . The next Avenue you can pursue is you can call the national MS Society and they will recommend to you MS neurologist in your area. They can be reached at 1 800 fight MS . They will assign a caseworker to you and they will help you in any area that you need guidance in . They are terrific and I've worked with them numerous times in the past locally helping out with Charity MS events .

The first thing and probably the hardest thing for people with MS that were reggyal go-getters is that we need to learn to budget our energy and stamina. We only are allotted so much for the entire day due to Ms and how this monster works and if we use all our energy up in the morning then we are shot for the rest of the day. Save energy everywhere you can. Get the dreaded handicap parking permit to save you from walking mile to the store so you can shop in less distress as you wear out. Do not let this monster run amok in your body By ignoring it and not getting on any type of therapy. What you experience and has found out is only the tip of the iceberg. T his monster is creating much more havoc within your brain and in body that you do not see until it's too late to reverse it.

I am glad you liked the cookbook idea. There's always other options and we just simply need to open up our self up to the possibilities. Volunteering is also another great way to give back and to stay busy. Helping to teach basic knots and safety measures used in rock climbing might be something you could try even if you can't climb any more. And again above all never give up. If you can't use traditional exercise equipment get a recumbent bicycle and pedal while you watch your favorite TV show to help keep your legs and core strength from wasting away. My son's bought me a very very nice one off of Craigslist for Christmas 2 years ago. It has all kind of features, probably more than I will ever use, and they spent slightly over $100 for it. It looked brand new as it was extremely lightly-used.

Just come to the chat room and look for things that interest you reply and others will help to share your burden and lighten your load. Listening is what we do best and we have broad shoulders in which you can vent and or scream and or cry on when you need to. Again I wish we were closer so I could talk to you in person. I live in the Central Kentucky area. Where did you say that you are from? Please let me know and until we speak again take care. Remember to fight on MS Warrior, fight on!

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I Fancy1959. Thank you for the recommendation for the balance book. Mine arrived yesterday. I really like it.🙏. Your reply to malmarie was amazing. I wish I could give you a hug. ❤️Linda

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I am in Lansing, Michigan

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Welcome Malmarie. Glad you found us. Sorry for the reason but glad your here. Your in an awesome chat room. We all are affected by this monstercalled MS so we know what your going thru from experience. There’s always somebody here so just jump in when you need us.

Donnie

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Hi malmarie! As you can probably tell from the responses, there is a broad spectrum of people dealing with MS here. We are wide range of ages and experiences. MS affects everyone a little differently so its good to share information.

I echo what others have said about making sure you are being treated by a neurologist specializing in MS. You need to be on a DMT (disease modifying therapy) to hopefully prevent progression. There are any number of alternative therapies to try but a DMT is the foundation for treatment...I believe anyway. I've had MS 18 years and was started on a DMT right away. (I was lucky that they were available back then.) I believe that it has helped me stay relatively stable all this time. Most people have no idea I have MS until I tell them. I also use non-medical therapies to treat symptoms.

As for finding a MS neuro in your area...have you tried calling your local National MS Society chapter? nationalmssociety.org/Chapt... Or checking out the neuro clinic at MSU?? Often teaching hospitals with a neurology clinic will have an MS specialist on board. Or call this number at MSAA (the organization that supports this forum): (800) 532-7667

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I did call my states chapter and the woman that answered had no idea if there were doctors or support groups, it was really strange. She sent me to the voicemail of a woman who wasn't in that day (4 days ago) and has never called me back. Luckily my mother in law is on top of this and had a teacher friend from where she worked that she was able to contact. I am new to Lansing and had no idea MSU had a clinic so I have an appt Monday with a new general practitioner who is referring me there.

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@Malmarie...sorry you got the runaround from your local NMSS. It seems to be hit or miss with them as others here have found. They are always worth a try though. I hope the clinic at MSU is helpful.

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Hi malmarie lovely to meet u from across the big pond 😊😊😊😊

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malmarie how we all wish this club was unnecessary, but we welcome you and hope we can encourage you.

Everyone has shared their ideas and wisdom with you. Your experience is unique, as is the experience of each of us. MS is a bizarre disease, and its course is unlike any other, but also unique to each individual.

Getting diagnosed can be the first real hurdle, and I’m glad you’re past that. Just naming this thing helps somehow. I know we all deal with difficulties differently, but I pray you come to a place where you “don’t borrow trouble,” as my dad used to say. I have times when I worry about what might happen, but remind myself that no one gets any guarantees in life; we just try to learn to adapt to changes as they come. I think we have an incredibly resilient and determined group here, and I think you are that kind of person already. Treating symptoms and depression effectively hells so much, and now we have many more options.

Please let us know how you are doing. We understand and care.

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Until now I have felt as though I was hogging all of these fun symptoms for myself but to hear a reiteration of my life gave me shivers! Pep talks aren't worth the oxygen processed to below them out, only to fall upon my deaf ears! Sermons are offered with ignorance as is fake solace from insurance hawking shaman. 23 years defeated with diagnosis only given in the last 3. Understanding is yours alone in many cases, but defiantly not alone. Heartfelt sorrow is all I can offer but willing to be a fly on the wall. Good luck and keep who you have close!!! MS is a scourge of doubt and disbelief, but knowing this is to face Truth. Hope you can relate. Not a philosopher only trying to understand many points of view. In this world of none I can only offer mine.

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The symptoms are insane! Honestly about 10 years ago or so one of my friends had a boyfriend that had it but I never knew what it was, just that sometimes he was outside skateboarding, then the next day laying on the couch surrounded by RX bottles. So it was quite the shock to find out what really happens and not know what could be next or when. I love your honesty. Thank you

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Welcome!

You can have ups and downs. I completely understand of not wanting to do something because you afraid how your body will react.

Try to look at things positive. You may not be able to go right now but once the doctors get your meds right you will be able to go with!

I try to look at the shape others are in an realize I'm blessed. Stay as mobile as possible.

My look at MS is "I may have MS but MS will not have me! Use you drive that's in you!

Best of luck!

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Good morning malmarie. I thought about you so much last night. I’m so sorry you have been hit so hard at such a young age. That must be so difficult. I was lucky to be able to continue my hiking until age 60, and yet it was still so hard for me to give it up. Try to do whatever you can to stay strong. At your young age there is a good chance of a cure for MS in your lifetime, as so much good research is happening now. I know it’s not my place to promote drugs, but if you find yourself getting to low, you might talk to your neuro about an antidepressant to help you through this really tough time. I am new here too. The kindness and wisdom of the people on this site is amazing. I wish I had found this site sooner. I am wishing you all the best. Stay strong. Linda❤️❤️

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Yea my doctor said most people have symptoms in their thirties but don't get bad enough to realize what it is until much later. I do consider myself lucky to have caught it early on. I do take an antidepressant that has worked well for me up until now so am thinking about taking one of my doctors advice to try cymbalta. That's amazing and so uplifting for me to hear how long you have managed well through this. Thank you for sharing that with me! It really gives me hope.

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@malmarie Welcome to the crazy 😜MSAA community. Sorry 😐 that we meet this way, but it is what it is 🤷🏼‍♂️. I was diagnosed 23years and been on 7 different DMT’s and now been on Aubagio this last year, has worked great. As the drugs wore off, I moved onto the next. Have had good experience on several🤗 Have been on Cymbalta for 22 years and has worked great 👍 with No side effects. Went thru several opioids for pain and then seven years ago had a pain pump implant 👍🤗 Has been great, does not effect your brain and does not go thru your liver or kidneys 👍 All drugs seem to work differently to everyone 🤷🏼‍♂️. Feel free to ask as there is a lot of good information here, but we are not doctors🤷🏼‍♂️ I know what you mean about being active as many of us here have been. I snow skied 85 days my last season, that I really miss 😔 I feel very fortunate that I can drive and get around with my AFO, walking stick sometimes. It is hard to adjust, but with meds and prayer 🙏 we keep going 👍 This is a life savor forum to be included in 👍🐩🐕🐾🐶 Prayers are with you 🙏 Ken

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If a pain pump doesn't go thru kidneys brain etc where does it go thru?No education here in this.TY Kenu..my buds...

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It runs around my side and taps into my spine and dissipates thru my back, but also a big help for MS pain👍The pain specialist says it’s absorbed where the pain is. Not like pill form that goes thru stomach and not fully absorbed. I know I have none of the weird feelings like when I did oral medication and test on liver has been clean👍🐾🐩🐕🐶🙏😉 Ken

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I actually just heard about the pain pump yesterday. So now that is 2 people that have told me it works which is always great news. I feel like I don't even know where to begin with questions for people on here like you that have known for a long time because I myself am just starting to learn about this disease. I have been trying to advocate for myself but it has been a tough road. I just moved to lansing though and am told I will be referred to an MS clinic which will be my first time meeting with somebody who actually knows what the heck this is! How long would you say the DMT's last and what kind of results did you notice with them?

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They all effect everyone differently and have different side effects also. Some are more aggressive , but all aim at slowing down the progression of MS. As I went thru the years I got more aggressive and new DMT’s keep coming out. For me the fatigue and depression is the hardest. Hang in there and my prayers are with you 👍🐾🐩🐶🐕🙏🙏🙏 Ken

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malmarie 😊 how ya doing?😀 As you can tell we are a friendly bunch!

But I almost missed that you don't have an MS Neuro?😕 Get one! 😀 Call mymsaa.org at 800 532-7667 ext. 154 😊 They should be able to help you!

Jes 🌠

Feel free to jump in anywhere! And post anytime!😊

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Malmarie I share all the thoughts of the group.Welcome as sad as I hate to add one more person with the diagnosis.I haven't been on DMT because of testing for JC Virus.I take your sharing a piece at a time and it is shock as any disease hits.You haven't lost who you are because this hit.You ARE still the athlete but in a different way.You are still a CHEF but with different capabilities.You are you.You have a great group around you but pain..is hell.A pain management clinic may help with even a narcotic issue if you are not living a quality of life.Docs are smart not to want more addiction but not all people face addiction and need to get on their feet., chair or moving around.What ever body part works exercise it with the ok from your doc.My symptoms have come and gone, but that is me.For now I'm in depression feeling differents pain all over and that is with medicine.Remember you are grieving and that is ok.The emotions range from anger, disbelief, on and on.Find alternatives with joy.If you cant see pls get someone to help at home and on the road, seek out books on tape, replace replace and there is a possibility for great good change.I am stuck in a mire at this time, so I grieve with you.It is hard on our spouses but remember he married you for you inside, that sparkle is still there, maybe its a foggy day but its there.This is the hardest thing ive been thru so far.Peace be with you.Jackie

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Hi jackiesj. I am sorry to hear you are also dealing with depression. It seems to be the one thing everybody with this has in common. I don't know your situation or if you are capable at the time but I have gotten a yoga dvd and a meditation dvd and stopped eating gluten, dairy, and sugar. It has only been 3 days and I already can feel a difference. Ofcourse I know there are days where even standing up without help can be impossible. I just read this book called The New Healthy and I swear by it right now. With all the crazy symptoms and medications and therapy I have found doing things to calm my mind have been extremely useful. Thank you by the way, I do need to stop saying "I was" or "I used to be this or do this".

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You are in my prayers 🙏. MS is a drag!! Try your best to be thankful for what you have and have done!

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Welcome! 🎉 Sorry to have you here, but you are in good company. Vent away!

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Food is medicine! The medicine I was taking for MS almost killed me. Please look into to it, I promise you will change your life around. Watch some videos about it on YouTube.

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