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I'm new to MSAA network

Hello, I am new to this network. I discovered it in the fall issue of the MSAA magazine. I'm not sure how I received this first issue but I sure hope I continue to get future ones. I am a 60 year old gal living in the foothills of South Carolina. Like many of you I'm sure, I had to give up my career due to the disease. I have had MS since I was 42. At first I was determined to beat it. But, five exacerbations in eighteen months later, I knew it was here to stay. Over the course of the disease I have had symptoms like depression, vertigo and numbness come and go. Now with better living through chemistry, I am taking a coctail of numerous prescriptions to treat the following:

Pain - mostly in my upper back

Numbness and Tingling - in my legs and feet causing balance issues and frequent falls

Spasticity - in one leg

Fatigue - from all activities or none at all

Cognitive issues - suffer from CRS (can't remember ___t!), difficulty multitasking, slow reaction time

No medication for this that I am aware of

I also have a strange jerky sensation in my legs when my feet encounter uneven surfaces or my feet hit something unexpected. This jerky feeling coincides with most of my falls. Wondering if anyone else experiences something like this? I have been happily married to my best friend, my husband, for 37 years. Also, my sister-in-law moved in with us eight months ago. And I can't leave out my 18 year old cat named Bow-Tie. I count my blessings every day!

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FiddleStyx hi 👋 sorry that we have to meet under such bizarre circumstances, but if you have had ms since you were 42 then you are no stranger to how unpredictable it can be. No Matter what symptom you may have someone on here will have experienced it, so ask away, feel free to laugh, cry, vent, give opinions, we are one big family on this forum, always ready to listen, give support, and help in whatever way we can. Blessings Jimeka 🌈 🦋

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Thank you so much. I will not hesitate to call on the group and individuals as the need arises or to add my comments. Have a great day!

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Hello FiddleStyx nice to meet u from across the pond. Recently diagnosed and trying to grapple with it all 🤔🤔🤔🤔 hope u are well xx

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Nice to meet you as well Janet. Take advantage of this forum and remember there are no dumb questions. I would love to help make your path as smooth as possible. I will answer questions I feel I can as they arise. If possible make time to do something fun today!

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Thank u FiddleStyx really nice to hear from u xx 😉

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Welcome FiddleStyx! You've come to the right place. You can laugh, yell, cry, joke, vent, whatever you might feel at that moment. A lot of us have been where you've been and understand what you are going thru.

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Thank you mrsmike. Those are exactly the qualities I like about this group! Have a wonderful day!

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FiddleStyx . Welcome to the family. I was dx in April at 65 so I’m still a rookie at this but I’ve been thru most of the symptoms as have so many more here have. We’re sorry why you’re here but glad you found us. Being we all are joined by this MSMonster that’s what makes our family special. We understand because we live it everyday. So we welcome your opinions our your questions. There’s always some of us around so if you need us just holler. I’m not far from you in the north ga hills in Toccoa Ga just 5 miles from the SC line. So welcome neighbor and God bless.

Donnie

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Thanks for the warm welcome to the family Doubled51, Yes, the MSMonster does rear it's ugly head throughout our days. But feel so blessed during the times when the monster doesn't make full tilt short and long term visits. We are definately in the same neck of the woods as I live in the town of Tamassee. I use the term town loosely! But nevertheless consider us to be part of the "Golden Corners". We have been to and through Toccoa many times. Since you live so close I have to ask, are you a Clemson Tigers fan? I realize it is still new to you but have your symptoms been consistent since onset or have any gone away?

Donnie, I Would like to have met you under different circumstances but it is still a pleasure! Enjoy this beautiful albeit cold day! FiddleStyx

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FiddleStyx . Hi neighbor. Naw I’m a die hard Ga Bulldog fan. We just moved to Toccoa in July from Cumming GA which is bulldog territory. Haha.

I’m afraid my symptoms have pretty much worsened since my dx. I was in physical therapy from August til Thursday when I graduated. Haha. Also graduated swallowing therapy Wednesday. But I’ve pretty much been in a downward mode.

Without the blessed days we would have given up. But ms or no ms I am a very blessed man. I told this group on many occasion that my God blesses me so much that I just have to tell somebody or I’ll explode. He is so good to me.

Welcome and God bless

Donnie

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FiddleStyx , Welcome! Love your name! Whether you just like to read our posts or jump in anytime, you will find a wealth of information here and a group who will become your friends and truly understand what you are living with.

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Thanks for the friendly welcome SueAB. It is truly a shame so many know the struggles I face daily. However, very nice having a new resource. Have a good day!

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Hi,

Welcome. I'm not from usa (australia), but I very much enjoy reading the posts on MSAA, as I find it really inspiring hearing from people in completely different places sharing their coping skills, symptoms, what helps etc. it's so motivating feeling we can connect and it not physically at least emotionally support each other

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Wholeheartedly agree with you Cdenney! Nice to have people to talk to that doesn't require any more effort than turning on the computer. Have a wonderful day!

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Fiddlestyx welcome to our group! I'm 74, diagnosed 3 years ago, but have had my symptoms for at least 40 years. I'm in central NC, so not far from you. CRS disease is an accurate description of me right now! Just had an MRI, hoping it shows what's going on.

This is a great supportive group. We try to encourage our friends here, and pray for each other when we learn of specific issues. I regularly just pray for all of my online MS friends. Hoping your find comfort from friends who are travelling the same road as you.

Have a happy and blessed New Year!

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Thanks for the warm sentiments 4fishlady. I sure hope you get the answers you are looking for from your MRI. I gather you are having some cognitive issues. If you don't mind me asking, why did it take so long to get a diagnosis? Due to your name I'm going to take a stab at it, do you like to fish? Good idea about adding MS friends to prayers. I will do the same. Happy New Year to you too! FiddleStyx

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FiddleStyx , welcome to our motley crew!👋 I hope this group can help you find information or just helps you make it through another day with MS.

Oh by the way, I like the “CRS” acronym, if I remember correctly many in this group suffer from that.😆😛😝

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Thanks Morllyn. I liked your cute response, can't have enough of a good sense of humor with this disease. Have a terrific day!

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FiddleStyx Welcome to this wonderful group!! I am Jessie. I was diagnosed in 2006 after my vision suddenly went blurry on me from stress of purchasing my first home and being on call at work when our phone system went down in the hospital....not fun times. I have spams in one leg mostly but sometimes in the other leg too. I also have depression, vertigo and numbness that comes and goes in various parts of my body in various degrees.

I am currently on Tecfidera, was on Copaxone since 2006 but switched to 3 times a week a couple of years ago after it was it out. So far so good. Go for 6 month blood work today after calling my Neuro's office to tell them that he forgot to order the blood work at my last appointment 2 weeks ago. I live with family because I could no longer afford my home on disability and did not want family helping with the payment. I have my 9 year old Pittie/Lab Caddie :)

Nice to meet, look forward to chatting more,

Jessie

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Thanks for writing bxrmom. My MS onset also began at a time of high stress I was having increasing difficulties keeping up with my job as a nuclear instructor, I was having more trouble than I realized taking care of my 93 year old father who had lived with us for 14 years. And I definatly could not keep up with this new thing called MS that was playing havoc with my health. As for your missed bloodwork, good save, that sort of thing can happen quite often. I take Copaxone 3X a week. I don't know what I would do without my family. Glad you had family to make your home with.

Is that a pit bull/ lab mix? I use to have a cat named Cadillac but, I called her caddi. Have a very nice day Jessie!! FiddleStyx

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Happy you found our online My MSAA Community, FiddleStyx - welcome!

And also glad you are enjoying our award-winning (sorry, had to) magazine, The Motivator! We put a lot of work into each issue to make sure it's understandable and relatable for the general MS community but also engaging enough for any MS clinicians. It comes out twice a year, so be on the lookout for the next issue in most likely late March.

You can check out any back issues on our website here:

mymsaa.org/publications/mot...

Also...you have an 18yrold cat named Bow-Tie?! That is awesome!

- John, MSAA

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Thanks John, MSAA for the website info and I will look forward to the next issue in March.

Yes, Bow-Tie is 18 and doing remarkably well, no doubt in large part due to his incredibly pampered life. But afterall that is what they are for. His name came from the black bow tie on his forehead on an otherwise completely white coat. Over the years his forhead mark faded and is now also white.

FiddleStyx

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Welcome to our group 👍🤗 as we all know MS is different for all🤷🏼‍♂️ This is a great place for information, ideas, options, etc. It will be 23 years for me in February. I am currently on Aubigo for the last year and doing well Enjoy the MS group 👍🙏🙏😉⛄️ Ken

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Thanks for the welcome kenu. 23 years..., I would say time flies when your having fun but, time marches on anyway. Glad you are doing well with your treatment. Have a happy day Ken! FiddleStyx

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Salutations! I have all of those symptoms. The jerky leg usually happens when I hit my foot or the bath water is 1 degrees too hot. I take modafinil for memory and exhaustion and as long as I've had a good night's sleep it works. Welcome.

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Hey SometimesCrazy, Thanks for letting me know that you too get jerky leg. It is a strange feeling and not sure whether to call it a spasm. Mine doesn't seem to fit the textbook definition for spasticity. Are you saying you take modafinil for jerky leg? Anxious to here back about that. I like your pen name, must say that applied to me long before I had MS. Have a good day! FiddleStyx

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I, and most people on here, I think, take baclofen for the spasticity. I understand not really knowing what spasticity is. I have a friend who can have non stop jerking in her shoulders for weeks. It's different for everyone.

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SometimesCrazy,

It's 'different for everyone' is certainly the catch phrase for all symptoms of MS for everyone. Makes MS one of the most baffling diseases. From what I have read about spasticity, it is a tightness and/or stiffness of the muscles usually in lower portions of the body. And it may be helped through stretching the affected muscles, perhaps via physical therapy. However, I had physical therapy following an exacerbation in early 2017 and the jerky leg symptom had them totally frustrated trying to think of exercises that would help. They had to admit there was nothing they could come up with. So, for now it appears to be in a category of its own since it doesn't fit the spasticity definition. I also take baclofen (80mg per day) for the spasticity I have in my left leg and foot but it has not effected the jerky leg contributing to my falls.

Have A Happy and blessed New Year! FiddleStyx

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Welcome FiddleStyk! I also have most of your symptoms especially pain which I have from my lower back down when I wake up in the morning. You will find this to be a great place to meet people who understand what you face everyday. You are not alone. 😀

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Thanks for the welcome BigMar7. Pain has been one of my primary symptoms since the onset. Pain had just been accepted as an MS symptom at that time. I don't know what people suffering from it did prior to this. Nice to finally connect with MSers around the world. Have a great day! FiddleStyx

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I can't say anymore than what's been said already, except my own hello 👋 so hello and Welcome FiddleStyx 😊 awesome on your kitty 🐱 mine lived to 17 and the vet was impressed! 💕 Give Bow-Tie tons of love!💕

Jes 🌠🎆

BTW jump in at anytime!😊

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Thanks for the welcome and hello jesmcd2. Tried to download a picture of Bow-Tie but was unable to from my camera files. Not sure how to do it but then I never claimed to be tech savvy. Believe me this is one kitty that gets plenty of loving.

Have a wonderful day Jes!

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I am overwhelmed, in a good way, at the number of responses to my initial post. So many sincerely interested, fascinating and like minded individuals all in one place. For those of you just beginning your journey with MS how fortunate to have a resource like this. I certainly could have used the comfort and practical hard knocks experience from a comparable site. When I first was diagnosed, I remember how desperate I was for pertinent information and how isolated I felt during those early years. Many years later I have fewer questions, subject to change, but comfort from someone who truly understands where I'm coming from is always at the highest premium. I will attempt to answer individual posts but if I run out of steam please don't hold it against me. This certainly doesn't appear to be the way of folks from this group. Have a happy and blessed day!

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Wow! You suffer from everything I do! You are the first person I have met that has upper back pain like me! Mine is absolutely awful! I’ve broken my lumbar and cervical vertebrae in a few places and that didn’t hurt like this. Also, if you read any of my writings on here, me and gravity my whole life as well as sudden stops have never gotten along! I’ve suffered injury after injury my entire life! Because I was that boy then man! If it goes fast see how fast! If it’s tall climb it. Anyway. Good to meet you. Hope to learn more about your symptoms and what you do and take for them!

Hopefully chat soon!

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Greetings rlh1974

I'm not familiar with your entries but I am now following you. Sorry you have symptoms like I do but it's comforting to know someone out there understands. My upper back pain is like a great BIG TOOTHACHE!!! And this particular toothache is like when the dentist is picking at it with that metal tool of his. E-gads! It does get my attention. I'm happy to say it is better to the point that I actually have been able to reduce some medications with the help from God and the Pain Clinic I was referred to. I currently take Neurontin and the politically incorrect Oxycontin. Also I use Lortab for breakthru pain. In addition I was also taking Klonipin and was using Fentynal Patches. The pain use to be so bad that I needed every bit of it. If it comes back with a vengeance I know the Pain Clinic won't put me on that again so I would be interested to know what you take? My falls although frequent, have not produced the kind of breaks you have had at least not yet. So far, a fractured thumb and bruises galore. Not looking forward to the next one... Take Care my friend, until next time. ...FiddleStyx

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