@AmberinAB

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AmberinAB

Friends with commonalities

Hi :) I just signed up and would love to meet some friends who have similar experiences with MS. Here is a list of some things I would love to find in common with you: - Positive attitude (no doom and gloom talk, no constant complaining and no general misery)(I am grateful for my life and the experiences that make me who I am, and I find reasons to smile everyday!) - Healthy lifestyle (I exercise regularly, do yoga and follow a plant based diet) - Has children, or would like to have children. (I have 2 and plan on having another in the next year or so) - Has hope for the future of MS research and cures. - Lives life to the fullest!! (I don't let the the fact that I have MS stop me from doing all the things I want to do now, before I get sick. I travel, I am pursuing a university degree, getting married, planing on having another child, spend time doing fun things with friends and family and I volunteer) Overall, I am feeling like the only people who I meet with MS are generally unhappy and they just make me worry about my future! I want to meet like-minded friends who also have MS, so they understand the internal day to day struggles that come along with the diagnosis and disease, But who still live their lives to the best of their ability and have a great outlook on life and a positive attitude. If this sounds like you and you think that we'd be a good friend match, please reply here, or add me as a friend. Thanks for taking the time to read my request :)

Mikayla_Tennant

@Mikayla_Tennant

It's good to hear from someone so upbeat and optimistic! I have secondary progressive ms, can't stand up or move my legs at all, but I'm used to life on wheels, and apart from that I'm healthy and happy! I have a 7-yr-old daughter, not having any more as I was a spoiled only child and loved it (and so does she!) I can't be negative as she learns from me and I want her to know that there are no regrets in life, just lessons. Recently started on Sativex spray, which has stopped any pain (or made me so mellow that I don't notice it anymore!) 😉

Matic91

@Matic91

Hi, really your comment was so positive that i almost cried :D if you follow a plant based diet what do you eat and what not? I tried several diet plans and yet didnt feel super but i wont give up :D and which form of MS do you have?

AmberinAB

@AmberinAB

Hi Mikayla :) Reading your message this morning gave me a huge smile!! I am happy to hear that although you have some pretty big roadblocks, you are tackling them with such a great attitude!!! I agree 100% that your daughter will learn so much from the way you handle the hard things in life, and the perspective you take on them! "No regrets, just lessons!!" I love it! She's lucky to have a mom like you!! I'm in a new(ish) relationship and my soon-to-be hubbie has no children, so we would also like to have just one. I have two children from a previous marriage, but they are now 14 and 16 years old, so they will likely be off to college when our new one is old enough to get to know them. I imagine they will have more of an aunt and uncle relationship than a sister and brother... but it's hard to say. It will be interesting going from the role of young mom to the role of "old" mom. lol Hi Matic 91 :) It was great to read your message as well! Positivity breeds positivity! Currently the neurologist is uncertain of my type of MS. I have multiple inactive lesions in my brain, and one big active one in my spinal column at the base of my brain, which causes me numbness from my shoulder down and an inability to use my right hand from time to time. Luckily I have no pain as of yet. But my symptom never relapses, it has been permanent for the past 18 months and the lesion keeps growing, so the doctors are unsure. We are playing the waiting game for now, which is ok because I want to have a child next year, and I can't have any of the drugs in my system during pregnancy (according the the neurologist). As for my diet I have actually already been a vegetarian for 9 years and after diagnosis, I have been trying to follow a more vegan diet, but it is quite challenging some days! So I don't eat any meat at all, and I have now cut out dairy and eggs (but only when I am at home, I don't always have that option when I'm out) My new focus is really on cutting out saturated fats, so that also includes most baked goods, which are my weakness, along with chocolate, so that has been the biggest challenge, and I definitely make exceptions from time to time! The neurologist that I see has also suggested cutting out salt, but that stuff is in EVERYTHING!! But I still try :) All that being said, I am very aware that every person with MS has different results with different diets, so I do not think that everyone has to be like me by any means!! I just read a few articles and studies on MS and plant based diets, and have a friend who has had huge success following a vegan diet with his MS (from walker to walking, and from 10+ new lesions every MRI, to only 2 or 3 now), and I figure it wont hurt me to try :)

californiadreamin

@californiadreamin

@amberinab It's great to hear the positive side of things from the whole spectrum on this thread. My wife has MS and hope she will stay positive whatever life brings We follow the oms diet but can you tell us more about your friend? That seems remarkable. I have heard of a few stories like that but would love more details on what exactly what they did. Really amazing to hear about and encouraging.

AmberinAB

@AmberinAB

Hi Californiadreamin' I think that I am able to stay so positive because my partner and circle of family and friends are super supportive and positive as well. I am sure there will be moments when I am not feeling quite so happy, or optimistic, but that is part of life when dealing with debilitating diseases. I wish your wife all the best through her journey with MS, and I applaud you for being a part of a forum like this to help support her!! My friend is in his late 50's. He has over 150 lesions, and was declining quickly. He was a farmer, and ate meat and dairy all his life. Two years ago, with a lot of encouragement and support from his wife, he started following a Vegan diet. No meat what-so-ever, no dairy, no eggs. He also added in a smoothie every morning made with Marijuana oil (I know this is controversial, but I wont judge what works. Also, I'm from Canada, where treatments like this are legal) After 6 months, his outlook was improving, he had better control of his legs, better memory function and overall he was feeling healthier. He was able to stop walking with his walker and goes on short walks outside now. His MRI's showed huge signs of improvement, and he is now off all medications as well, which is the best part!! For the first time in 10 years he has been improving instead of steadily declining! Last summer, he took a 2 week "break" from his diet while on holidays, and was needing a cane again to walk within days of getting home, it took him about 2 months of being back on the diet to be back to walking without it. He has not strayed from his diet since and is still doing great today! Just a side note, I personally have not added marijuana to my diet, I do not feel the need to, as my MS is not nearly as progressed as his is. I hope that helps :) Any other questions, please feel free to message me personally :)

Matic91

@Matic91

Hi @amberinab Oh you also don’t have any pain. Nice to hear that . You made a magnetic resonance of your brain and spinal column? Normally neurologist just make a MR of the head, although I read several articles which mention that lesions may develop in the spinal column. After the birth I recommend you Tysabri because most of the people with ms I know (actually 99%) are doing excellent with this medication, one got up from a wheelchair and was dancing like crazy a few months ago. I would also take this medication but unfortunately I have a so called JCV virus and it would bring me more side-effects than benefits. I cut out most of the dairy products except I drink coconut milk or oats milk because im afraid of turning in a teabag if I continue drinking tea :D :D :D I separately eat three eggs per week, according to an article it should be beneficial. I don’t use any salt, eat more or less raw vegetables except I fry mushrooms in a pan. Make my own gluten-free bread. I absolutely agree with you about salt. It is in everything, I cant remember reading a product on which there would stand no salt in it. The same goes for Gluten which is actually a linking substitute, without it certain nutrients would simply fall apart. Of course it is difficult or should I say impossible to develop a plan which would fit all the people. Sometimes I cant change my eating habbits because my family does not have MS and the don’t care about eating certain foods. I like it without salt but they always want more and more salt, the same goes for additives. Did your friend follow the swank diet plan?

AmberinAB

@AmberinAB

Fortunately I do not have any pain, So I cannot begin to understand how hard that must be to live with. This is definitely one of the reasons that I am still able to be so positive I guess. My hope with finding other friends who have MS and a positive outlook is because I feel that I cannot relate to people who are suffering all of the time, and this is not what I want to surround myself with. I don't want to be made to feel guilty because my disease is not as advanced as someone else's, or made to feel like I can't be happy or live my life to the fullest, that instead I have to be depressed and scared and worried about my future. I went to one support group meeting and it was the most depressing and sad event I have ever attended. It's great for the people who are at that stage to find the support they need in that way, but for me it was way too much. I am hoping that through this forum I can find other people with MS who are still happy and have a positive attitude. There may well come a time when that Is no longer were I am at in my life, but then I will seek different support I suppose. I think that people who are in the early stages of the disease need friends who understand the stage that they are in and need that support too, but in a different way. I am excited to be able to meet other people with MS who are dong well and living great lives, because so far all I have encountered in quite awful :( With hundreds of thousands of people living with MS, there are bound to be more people like me out there, and I really want to meet them :) So far this forum has been great!! In regards to my fiends diet, He didn't follow any one in particular, he just went vegan, and added in his smoothies :) Thank you for the advice on a drug to try after the birth (of a baby I hope that I am fortunate enough to have next year). I will look into it for sure :)

EdmontonAlberta

@EdmontonAlberta

MS was suggested by my Family physician but I knew he was wrong. I come from a large family; very extended - nobody in any generation ever had MS. Besides I am too old; presently in my 60's & was very active in sports. My Neurologist sat me down in his office so we could view my brain MRI. Very impressive with these little white lightning bolts heading from the sides of my skull into the middle of my brain. I was impressed until the Neurologist told me the lightning bolts were bad - they were proof of Primary Progressive MS & that no drugs had been approved in Canada to help me. He suggested I research the topic until we meet again - and that I quit my 45 years of excessive smoking & drinking immediately! The beer has almost vanished but... And my wife has changed my diet so much that I almost don't recognize my food. Fresh fruit Smoothies every day; no eggs, milk, red meat, etc... Jos is a great cook so I love what I ingest; just don't recognize it... LOL Initial symptoms over the past few years were lack of bladder control, my right foot shuffling when I walked & a lack of balance. I chalked this up to spinal arthritis for which I had surgery last July - and of course, excess drinking. Did not realize I was being hit with a double whammy. As far as emotions go, no problem on my end since I went through this 25 years ago with my first wife. Scleroderma took five years to kill her; she was as much of a pleasure to be with the day she died as the day we met. So I just follow her example. I married another impressive woman & have a strong network of friends & family. I may never work again so I find other things to keep me busy & productive. Life is a journey & we all know the destination; I am just going to enjoy the drive.

Stumbler

@Stumbler

@amberinab , the correct link to @vickivictoria 's Facebook Group is :- https://www.facebook.com/groups/Controlms/

motorhead

@motorhead

I suppose I was really lucky- when I had my first symptoms I was talking to somebody at work about my symptoms. I work in a "safety critical" environment and had convinced myself that I wouldn't be able to carry on working in my job. After talking about my symptoms (tingling in both my hands and feet, eye problems) the first thing he said was "sounds like you've got what I've got." I hadn't even mentioned my first appointment at the MS clinic, but for me it was so comforting (maybe that's the wrong word?) to know somebody had MS where I worked and he was still able to work. He was able to give me little bits of advice, told me to rest when I need it. I think knowing that I could carry on working and still "be me" really strengthened me, he has carried on with his life as normal as possible. It was great to be able to talk to someone who knows that no two days are the same, but so to be really positive and say "don't stop planning your life, keep living just rest when you need it" when I felt like the end of the world was coming. Now, a few years later we rarely discuss MS but we always have a quick quiet "how have you been?" I then found out someone who drinks in the same rock venue as me also has MS. I'm really lucky in that I have an amazing wife who puts up with me stubbornly trying to do everything I used to even when I'm a bit tired, and I have a fantastic consultant who is really easy to talk to- appointments with her are like a good catch up and friendly chat over a coffee- she's also full of information about new research, new theories on what can cause relapses and how to deal with poor sleep patterns arc I understand that it can be really lonely at times- I find here full of positivity. It's taken me 18 months to try and get used to MS, and I have felt isolated at times but I take comfort in looking at how far I've come in 18 months from being an emotional wreck having panic attacks and to getting on with things, but just having more sit downs and occasionally losing my balance. My wife and I now try to book "little adventures" now so have little weekends away- it gives us both something to look forward to.

AmberinAB

@AmberinAB

I'm so happy to hear from everyone on here!! Thank you all for sharing your stories!! @Vickivictoria, I will definitely check out your facebook page. It seems we have a lot in common :) Thank you. @edmontonalberta, I am also the first in my family to have MS, and didn't think it could possibly be real. It was just something the Doctors were "ruling out". It was quite the shock to get my diagnosis. My neurologist was pretty great though, very supportive and positive! Perhaps we share the same one, I see Dr. Witt. I'm in northern AB and have to drive 500km to Edmonton to see him though :/ @motorhead, It sounds like you have a lot of great support in your life and things are going well :) Having supportive friends and partners is a key factor in all this!! It is so nice to have this forum!! You are the first people that I have spoken with who seem to be going through the same things that I am. I did feel very lonely in this and its amazing how a few words from other people going through the same things can make everything seem so different!!

motorhead

@motorhead

@amberinab I think it's really important to get as much friendly support as you can- I think this place is excellent for that, there's so much positivity on the page. I spent a lot of time looking at other forums and found them to be so negative. I know MS is an awful thing to be diagnosed with, and because it's so specific to one person and no person is the same it can be really difficult to find that support. I know how lonely it can be, but stick with it- it won't all make sense all the time- I have good days and I have bad days, sometimes I'll have a flush because of my medication for no apparent reason and sometimes I'll get tired from doing nothing but yet not be able to sleep because my feet feel like they're on fire. Lots of people you know will have a story about someone they know has MS- they're either fine and "nothing is wrong with them" or they're having a "terrible time of it." The unpredictability can be difficult to come to terms with, but honestly, live as much as you can, do as much as you can but just remember- if you feel tired take plenty of rest. There's some fantastic research going on at the moment and new medications (there's a massive list on the MS Society website.) Just remember you're not alone, they're a fantastic bunch on here full of positivity when you're feeling a bit low :)

EdmontonAlberta

@EdmontonAlberta

amberinab Drive 500 km to Edmonton? I am guessing Fort McMurray. If so, that was one heck of a fire last spring... As far as the next time you get to Edmonton, we will definitely get together. Jos & I know all the best ethnic restaurants. My Neurologist is Dr Stewart; his office is beside the Royal Alex Hospital. Gord

californiadreamin

@californiadreamin

I think some of the words here dont represent exactly what people intend them to mean unfortunately. I think the orginal quote expressed her thoughts well: "I want to meet like-minded friends who also have MS, so they understand the internal day to day struggles that come along with the diagnosis and disease, But who still live their lives to the best of their ability and have a great outlook on life and a positive attitude." I can say in our family, with my wife having MS, many things are different but our outlook in life is better. We now appreciate the things we didnt appreciate in the past and took for granted. Our friendships and relationships are deeper. I have only met two people with MS in person so I cant comment much, but i have met a lot of people that dont have MS that I shouldnt surround myself with because they are very negative. @mermaidia11 I think amberinab's desire were to find people to help lift her up and not connected with their physical ability. I didnt interpret her friend request to be an actual in person first request but a virtual request on this site. Either way, your point is a valid one that everyone should be sensitive to the fact that there are an entire spectrum of needs here.

AmberinAB

@AmberinAB

@mermaidia11 I can see that you are offended by my reaching out to other people with MS who are in the same situation as I am, and although I'm sorry that you feel this way, your reaction is exactly the same one that I am referring to where people make me me feel like its not acceptable to be positive. The problem that I'm facing is that EVERY forum and site I find is directed towards people with MS who are in the worst situations and who are going through hard times. I cannot relate to that, and I do feel depressed and sad when that is all I am ever faced with. I am well aware of what my future with MS could look like, but does that really mean that I have to face it every day, that I have to surround myself with and be worried , scared and sad?? People with MS who are not sick, and who are not suffering, still want support and friendships with other people who know what they are going through. What about us? Why is it that we cannot reach out to other people who are in the same situations without offending someone else?? This is EXACTLY what I was saying about being made to feel guilty for not being sick yet, and for staying positive in spite of my future prognosis. There are no supports for people until they are really sick... but that shouldn't be the case. We are all going through something here. People with MS who have progressed have support groups and forums, people who are newly diagnosed with MS, or slow progressing MS, have to wait until we are sick to get that same support. Going to a support group, or joining a forum. where we have nothing in common with other people is not beneficial to us either. It's emotionally and mentally draining, and its not going to help to cope with MS or to stay stress free or maintain a positive outlook. (All things that are said to help avoid relapse) Having MS does NOT have to be all negative, and saying that I want to have friends that share commonalities is not at all unreasonable, even if those commonalities don't fit what you seem to have decided that this forum is all about. If I said I was looking for friends that were unable to walk so that they could relate to me because I was also unable to walk and wanted to find friends who understood what I was going through, you probably wouldn't have a problem with that.... What you say about this site is quite unfair and unjustified. There are many people on this site with many different types of MS and I am not saying that I don't want to talk to anyone, I'm only asking for friends that I have things in common with, that I can talk to and build friendships with. If you do not think that you can connect with me on that level, don't friend me, and don't message me. Easy as that. There is no need for you to judge me, or to publicly criticize me.

EdmontonAlberta

@EdmontonAlberta

"The problem that I’m facing is that EVERY forum and site I find is directed towards people with MS who are in the worst situations and who are going through hard times. I cannot relate to that, and I do feel depressed and sad when that is all I am ever faced with." amberinab - as I mentioned above, my first wife was diagnosed with a crippling and deadly disease. I did not mention that she reached out to Scleroderma groups - then left because they were too depressing to be around. She needed strength to face her challenges; everything negative was avoided. She kept the strong network she had built up throughout her life, leaned on them when needed, but overall lived a shortened yet very happy life. She kept that network because she was an absolute pleasure to be with!

AmberinAB

@AmberinAB

@ californiadreamin' and @edmontonalberta Thank you for your kindness and understanding. I did not ever write this post with the intention of hurting anyones feelings or causing anyone to be offended. I have already met some really great people and I am so glad that I have reached out because before this forum, I had no one that I could talk to who seemed to understand where I was coming from. It turns out that there are actually quite a few wonderful people out there who are happy to talk about their experiences with me. People who are positive, kind, interesting, funny, knowledgable and uplifting :) Great people that I am excited to get to know and develop friendships with!!

Honeysuckle

@Honeysuckle

Wow - it's like you read my mind lol! Thank you for your post! This is EXACTLY why I am trying to set up a support group as I want to create a positive group with a can do attitude. A place where people with MS actually want to come as moaning is banned, clicky groups of the same people and only medical professional POV's are not permitted lol! I am just waiting for my write up to be double checked and then I was going to post details here. Where do you live Hun? My group will be in Bristol, England? But it sounds like we're on the same page! 😊

isaacson72

@isaacson72

What a great post! I was just responding to another post saying I was trying to find the positives in an MS diagnosis and for me, it was more compassion towards others. I'm normally a very upbeat, happy person. The MS does depress me from time to time but I just fake it til I make it... maybe it's the Canadian in us? You mentioned you were from Canada? I was born in Vancouver. I live in WA state now but hold on dearly to my Canadian heritage. I still have lots of family in Alberta. (edited to add: just noticed you're from Alberta! I've got a cousin in St. Albert, one in Edmonton and another in Calgary, and my aunt/uncle are in Edmonton. I spent a bunch of Christmases in Edmonton, ice skating on ponds outside. I love it there, but haven't been there in probably 25 years now - I need to make a trip up there soon!). This forum is by far the best & most upbeat one I've seen. I've actually only been on 3, one I ditched within 2 days, the other I rarely look at (Patients Like Me). I joined a FB group... and hid it from my newsfeed in less than a week because it was nothing but negativity (but I didn't un-join the group, because sometimes it's nice to ask a question & get immediate feedback). But the folks on this site are knowledgeable, upbeat and very friendly. For the most part I try to ignore the MS but it's hard. I'm lucky in that my symptoms are all mostly invisible. I've got just one lesion on my spinal column, the rest are in my brain. The leg weakness/tingles I had last year are gone now so while I'm mobile, I plan on doing everything I can. I hike a lot. This year we may end up doing more car camping than backpacking but there will be a couple backpacking trips too. I have a 14 year old son, our only child, and want to take him to see the world and have many adventures before he moves out. Last year we visited my sister in Australia, this summer we're going zip lining on Vancouver Island. There may (or may not) be a day when I can't do all that, so I plan on doing everything with him while I can. I'm rambling now & really should be working. :) It's nice to meet you! -Michelle