I've been visiting here about a month or so now in hopes of finding answers, but have decided the best way to get an answer is to ask a question.
I hope you all can help me:
Just exactly what is a "relapse"?
I was diagnosed with RRMS in May of this year and have had trimmers (my whole body feels like it's shaking but it's not visible to anyone), headaches, numbness, can't find my words, and at times I can only see what's in the middle of what I'm looking at, the rest is "wavy".
I turned 57 February 24th and on the 26th my whole world fell apart. I was headed to one of my three jobs (I was doing all I could to keep my kids from having to take care of me) and one of my tires was low so I stopped to put air in it. Out of nowhere my head EXPLODED. That was the first of four trips to the ER and three to my PCP in six days. MRI's, Spinal Taps, so much blood work my arm was black...........Someone please tell me which of these, if either, is a relapse.
I'm new to this all. It's hard to talk to my family, their new to this too and don't understand. I now live with my oldest son and granddaughter, have no income at all and am just scared. Sorry for the rambling, lol.
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alligatormary
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I've had chronic progressive MS for the last 29 years so I can't answer you question regarding the nature of relapses, however I do know that whenever I had trouble dealing with my MS symptoms the love and care of my wife, who I love deeply, helped me greatly. So, based on my experience, if I were you I would accept any help your children can give you. If you love your children and they love you it only makes sense you share each others misfortunes and successes. Let them help you fight the MS!
Mary, My neuro says a relapse is any new symptom that lasts for over 24 hours or if you have a reoccurence of a symptom that has gone away. The eye thing might be optic neuritis. Maybe you should call your neuro.
Hi, Mary. I'm sorry you've gone through so much in such a short period of time. I imagine you have as many questions as you do fears. You don't mention any symptom management medication (for the shakes/tremors) or whether you have been put on a course of steroids recently. But I'm happy to hear you'll be calling your doctor as Iona60 recommended.
Although MS affects us all differently, and we come from various backgrounds and situations, we are united in our desire to help answer questions and encourage one another. Others here have shared some great insight with you.
Please let us know what your doctor says. We care. 💕
Hi Mary, I was diagnosed in March of this year.I haven't figured out the relapse part either! there are times that my symptoms get way worse, so I assume that is relapse? I'm sure your stress is likely an issue. I agree you need to see Dr about issue with eyes. Take care!
Hi you-all AlligatorMary right back at you this is a MSFighter welcoming you not only this chat room but the state of Kentucky! You see I have lived just outside Versailles Kentucky for almost 29 years now. What part of Kentucky do you live in?
Being from the same state is not the only thing we have in common besides MS of course. I am also 57 years old and I was diagnosed about 4 years ago. The very first thing I need you to do is take a deep breath close your eyes and realize you have found a safe place. It's okay to vent on us it's okay to be lost and confused and simply searching for a place to anchor in and try to find answers. I say it's okay because we all been down that same Rocky path that Ms is leading you home right now. We understand scary it is especially in the beginning when you have not a clue where you're headed. Sounds like you've undergone a barrage of testing, MRIS, a spinal tap, and what feels like a gallon of blood work. Do you have a neurologist yet? If not you probably need to get one. They specialize in many more of the symptoms you currently have. Your PCP should probably be able to give you some names or even get you in to see on the road just quicker and you put yourself. Be prepared to take your MRIS and every piece of paper given to you from the blood work spinal tap with you to your first visit. Also this is just as important, make up a list of questions you it might be a page and a half long but take them in with you so you find out answers. Information is our friend and once you have some answers this will not seem scary to you as it does right now.
We all started at the same point where you are. We were new to this and scared out of our wits. I would have given anything to find a site like this! We simply help by sharing our failures and sharing our victories we will somehow shed some light on all the questions you have. Even those questions you don't realize you have yet. You know damn where to find this. We are only supposed to weigh. And generally speaking someone is usually always arousing the chat room and will get back to you within the next few hours. I would like you to take away from all this that together we are stronger. So come back as often as you want and talk to us so we can help you by sharing what happened to us. We are concerned and we know how it is when you're first diagnosed. Please keep us in the loop. We look forward to your responses and posts. Take care of yourself.
Hi MSFighter and thanks for all the great words of wisdom.
I live in Bowling Green about 45 mins north of Nashville.
I happened to be seeing a neurologist for numbness in the back of my head last year so I was able to get into see him almost instantly. He put my in the hospital for a week pumping me full of steroids and running more test. I like him very much, he was at the foot of my bed every morning at 7:30 the whole week.
My grandparents lived in Beaver Dam and have a cousin in Lexington.I miss country!You have the best bluegrass, the best horses and a killer accent to boot.I hope you have some answers for now....
Hi alligator mary (interesting name choice) welcome and I agree with what all have written above, especially about the warmth and support from this group. Definitely contact a/your neuro. Sending a virtual hug to help you get thru this!
Hi Mary! One of the things you might look into is SSDI, government assistance you have earned through social security. That way you would have some money coming in each month. I am so very sorry you are going through this. I have had many relapses, they are when my symptoms flare or new ones emerge for at least 24 hours, but this one I am in now started August 12. I woke up and just could not walk, after doing great for 8 months. This is a strange disease, but all of us will love you and support you as you ask questions, okay? Keeping you in my prayers, Kelly
Hi alligatormary welcome to the roller coaster ride they call MS. It sucks. But we can't change it. All we can do is learn to go with it.
I'm sorry that it took you a month to ask, but so glad you did. We always welcome new ppl and questions here.
Like the others have said call your neuro about this. Your neuro will be the one to put you at ease with what's going on with you. And decided the best course of action to take. It almost sounds like a round of steroids might be just what you need. But your Dr will know for sure.
It is wonderful that you have a great support system at home. And now you have us also.
Hi alligator Mary, I agree with everyone about seeing a neurologist and I agree that you may need the famous dose of steroids, but it is at least something to the talk to your neurologist about.
Hi Mary! I forgot to mention that the steroid treatment we are writing about is different than the steroids a lot of athletes and some weight lifters use.
I also want to add onto the welcoming of alligatormary to our My MSAA Community!
As you have already seen, posting your thoughts and questions (and worries and hopes) on here elicits a very thoughtful and understanding outpouring from our followers. Please continue to do so whenever you have questions or just want to share something interesting that happened to you during your day.
Hi, Mary, & welcome. Ditto on all replies above! As much as I love MSAA, may I suggest you contact the National Multiple Sclerosis Society 1-800-FIGHTMS, or 1-800-344-4867. There is probably a physical Chapter close to you & they can be helpful in many ways. I used to be a Facilitator at "Self-Help" meetings once a month in the San Francisco Bay Area. I left there ten years ago & still speak/email numerous members to this day! Not unlike this caring & informative group.
A couple things I would add are: Not all symptoms are MS, could be something that is correctable; When you go the Dr. (Neuro or Primary), "bullet" your 3-5 burning questions since most Drs. don't have unlimited time to devote to a patient (guess they don't know the definition of Patient ;-} ) ; & two of my personal mantras are ~ keep a positive mental attitude, and a good sense of humor helps me, too. I realize the last one can be difficult, but I've had Primary Progressive MS for 32 years and have really tried on that one! Excuse all the punctuation but I use to work for lawyers & they seemed to think they got paid by the keystroke - lol
This site is very helpful & nonjudgmental, so feel free to unload on us, we'll still care!!
Oh, thank you all so much for the heart felt welcomes and suggestions/advice. I will come back and share more, but for now I am coming down from two manic days, and many restless nights. Anyone else do that? Most days I'm just wore out and haven't done anything, then every so often it's like I have to get the entire house cleaned inside and out, just to be down n out for the next few days. Anyways.......I sure do appreciate you all being here for me and hope someday I can be as helpful to others along with you.
I'm not sure I could add much to the wonderful advice and words of encouragement, but I'll add another welcome to the bunch.
I think we can all relate to many of your experiences, though we are all certainly unique. It sure does help to have the support we find here and support from family who love us.
I might add a small additional suggestion that while you are having so much to deal with, are wading into the depths of information, that if you are having trouble keeping all the information straight or feel confused or overwhelmed with so many strange terms, it may help to have someone with you during appointments. Writing out questions to ask your doctor's and writing down answers may help later. Most of us have dealt with the MS "fog," which never happens at convenient times.
We sure wish you well in adjusting to a new normal and pray you have all the help you need.
I don't think you're ranting Mary . You have questions , totally normal . I've been dealing with MS for many years and I still have questions ! We're here to help one another . 💞
I don't directly refer to things as relapses but exacerbations. When I have any health issue all my current symptoms increase in sensitivity as well as any new symptoms. I usually wait a couple of days to see if the symptoms subside. If I'm running a fever I call my PCP if I'm not I see my neurologist. Normally if the conditions have worsened over the week she will start me on steroids and schedule a MRI.
That's my definition of relapse. I hope it helped to clarify.
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