Can anyone relate?
One day, I'm ok...may even be able to get by without a cane. The next day, it's a no go. Just up In the air. I, at this point, don't know what to expect from myself. I'm doing my scouts best to determine what my threshold is yet the inconsistency has created a learning curve that leaves me stooped. What in the world? This is crazy...
When I first was diagnosed there were days I swear I would say "nothing is wrong with me, I don't have MS". I would go through the day like nothing was wrong with me. I think I was in denial and not having symptoms didn't help that feeling. I just eventually came to my senses and realize it's called RR MS for a reason. My Relaspes were not that often. I just wish I had somebody back in those days who could relate what I was going through and could tell me what to expect.
Right...it's the not having anyone (here) to relate to. My goal... I want to MEET someone like me.
Kathy, you may meet someone who has MS or the same symptoms as you, but there's NO ONE like you! 
Just remember that!
Kj9681 it's very frustrating. I was just diagnosed and my sister was diagnosed last November, but even when I ask her if she has anything like my symptoms , she seems to get irritated. She tells me no two MS'ers are alike. You just want someone to confirm what you're going through.
Hi Judi, do you mind if I ask how old you and your sister are and do you have the same type of ms? Thanks Jimeka
I have PPMS and some days if it wasn't for the balance problem I could think I was nearly normal, then I get days where I actually think what good am I doing. I used to teach Sunday school on Tuesday nights as the kids were always out shopping with parents on a Sunday, I had quite a gathering and I felt as though I was contributing in helping raise the children, I also had a fellowship at home but now it takes me all my time to run the house, and I can get quite upset and very emotional. Even going out on my trike with my dog is an exhausting ordeal. They say exercise but being able to do it is frustrating. I have gone from climbing mountains to sitting in a chair latch hooking, it takes some getting used to. It's so hard , if anyone wants to have a good vent then just message me, I certainly know how you feel. God bless all of you who are in the same predicament . Cheers Jimeka
I ran an auto garage for a major auto shop. I have worked on cars since i was a teenager and loved it. I went from being a full time mother and shop manager to barely being able to walk at one point. I haven't been able to work since 09 and it still gets to me at times. I was a outgoing, hardworking and very driven woman that never let things stop me until my body stopped responding. It was a hard pill to swallow. Now i have a exercise bike in my living room, I do small jobs on my children's and our personal vehicles, when I'm up to it. I took up painting and I'm concentrating on my writing, which has always been a hobby. I'd say I'm blessed
I think most of us are familiar with your feelings. Never realized so many of us have a few good days and are sure we don't have MS.
I'm over 70 and for last 40 years have felt awful much of the time. Diagnosed 7 years ago after my brother died with MS. He was diagnosed 2 weeks before death.
I have secondary progressive MS now. Rarely a good day, but some days I'm convinced I don't hv ms. Today I used cane, but by 6pm, dragged out my scooter.
No rhythm nor reason to MS. I chalk it up to MY or YOUR TIME IN THE BARREL. Stay strong mentally. Hard to climb out of depression.
Plenty of help out there for us. Stay active. I remind myself often others in worse shape. Through MS Society have made friends with some fellow MS ladies. Go to MS water aerobics, sudohu, my kindle. I now need 2 hour rest mid day.
Figure out if any pattern and keep a daily log of any activities and your mood. Glancing back, I've figured out what I might have done that impacted me.
Good luck.
Your so lucky to have water aerobics in your area. I use to have that and loved it. I had to move from that area unfortunately and now I only have Silver Sneakers . I got so tired after class that I needed to stop. I was definitely stronger before I moved.
Now I work out at home yoga + weights. Naps at 2pm.
I love to dream when I sleep... am normal and can walk without my walker.
I find I have to get everything I want doing by mid morning, then I too have to take a nap. Sometimes 2 hours, other times a hour, and then sometimes my mind is so active I just lay there. I am sorry about your brother, I didn't know ms ran in families. We already have breast cancer running in our family, my Grandma died of it, although she survived until she was 102. My eldest sister had the lump removed, radio therapy, and she is now 64. My youngest sister is terminal, 56, getting her house in order is so sad. My mum passed away 3 years ago, wondering why her 3 daughters had been inflicted with such horrible scenarios, ours is not to question why, so I have been told. Anyway it's my youngest sons 25th birthday today, so we are going to go see him this morning. Life goes on and we have to make the most of each moment. Hope you all have a sun blessed day. Jimeka x
Wow! This conversation is so relatable. Especially at first, I wondered if I was misdiagnosed. My first noticeable symptom was trigeminal neuralgia. Other than that, I was super woman, ran marathons, worked a high stress job etc. I have RRMS that might now be SPMS. It's a slippery slope and I keep resetting the bar lower. But some days I still feel amazing and then seemingly for no reason my brain and legs refuse to communicate, I'm exhausted, and I'm slapped in the face with the awareness of my MS.
I remember 35 yrs. ago after being diagnosed , going to the FU appointment with Neurologist , walking 2 miles to get there with my 1 yr. old and telling him " I don't have time for this !" , he said keep that attitude . I try my best to do that...
Kj9681 l can so relate, yesterday I didn't need my cane at all. Didn't have a problem almost could forget l have MS. I even left my cane in the living room, big mistake, l just bit it. As in fell down ugh.. what a wake call.
I feel good enough to leave my cane in the car however, I'm not brace enough to leave it at home. It broke my entire heart when I realized I needed it... I named my cane "War." Together, we fight!!
My first cane was named Gravity, by then my 2 year old Grandson. He told me that it would help me stay upright and fight gravity, so the name has stuck. Of course it is covered in butterflies, so are the other 3 I have, all different colours, it has to match what I am wearing!!!!!!
Has anyone ever heard about "assistive device dependence"? Sometimes I can get along at home without my cane (which is named "Appendage--maybe I should come up with something more positive, but I just hate it so much) but I can't get along without it outside the house, and I have been admonished both by my PT and my neuro never to do so. Then I read something about how people who must depend on assistive devices such as canes or walkers can become so dependent on them that they can't go without them even if they actually are physically able to. Now I fear that this has happened to me. Or maybe it's just that I hate it so much because I see it as a sign of weakness and I was always used to being so strong.....Anyone else have this problem?
My Goddard actually warned me about this very issue. He said not to always use devices if I want to be independent. I believe it. I'd say you are right, so is he.
My cane gives me security. I do not use it around the house but I definitely need it to walk with outside, I fall over so much without it. The new one I have just got has a round plate on the bottom, and is slightly sprung so the impact of it hitting the ground when you walk isn't has shocking to the arm. I like it has it gives me abit more confidence and so helps my independence, what's left of it. Around the house I use the walls and furniture.
Fortunately around the house, except when I am having a flare, I can usually get along without it, but, like you, Jimeka, sometimes I have to use furniture or the walls for support. I tried that HurriCane that they advertise all over the place, and it was awful. The triangular bottom wasn't large enough and it kept losing pads, so I would fall anyway. And the lady who used to fold it up like Houdini and put it in her purse in the commercial must've gone to college to learn how to do it, I switched to a Yugo which has a large 4-prong star-shaped very strong foot on the bottom which works much better for me. But I still hate it. A couple of times I have forgotten it when I've left the house and I have been very insecure being without it. My walking is much worse and I always feel as if I am going to fall, but again, I wonder if I really could go without it sometimes and it has just become a security blanket that I don't always need.
Kj9681, hello I'm Fancy1959 and I wanted to welcome you to this wonderful chat room. How long has it been since you were diagnosed? Do you have relapsing-remitting MS? When I was first diagnosed and it's not me flat on my back for about 2 weeks. I literally couldn't get up. Once I got steroided it to death and the tests were run I was put on Rebiff. Early on my symptoms did the roller coaster ride, like yours, where they were going up and down some good days and some bad days. I switched Therapies several times in the first two years and things seem to be going well. Then my relatively new job decide it was time to make everyone jump through hoops, especially the newbie like myself. The stress level became unbearable when you would do as you were told, the one of 8 supervisors who did, and nothing ever pleased them. The stress I endured had a very negative impact on MS and its' symptoms. Please keep in touch.
I know, personally, I have finally learned to watch the weather. High temperatures with a lot of humidity are not my friends! I have to be careful in the heat because it drains me totally in no time at all. Any type of virus also leaves as limp as a rag doll. If I spike a fever it triggers an MS flare almost immediately and I literally melt like a snowflake in July. 
I also change from day to day without warning and can change drastically within in the same day .....
MS is a real booger! It amazes me how it continues to stomp the world! We'll be rid of this monster soon! We are costing the medical world too much...
Sometimes I feel the Medical world loves us because of the money they make off us. I have been dealing with this for 37 or more years , tried all the injectable drugs and I still got worst after 15 yrs. of taking them. I stopped them ...5 yrs ago, still using my walker,which I didn't need when I started injectables.
Makes me wonder...🤔
Me, too. After I was first diagnosed, Gilenya had just come out and my dr. put me on that. I felt it was doing a lot of good for me, and that it might even be reversing some of the damage that had been done although they told me that it wouldn't, but then it tore up my stomach and I had to go off it. Them they put me on Copaxone and it didn't work and I couldn't stand the pain from the injections. Now I am on Tecfidera and it seems to be working but I can't afford it and I can't get assistance because I am on Medicare Part D. If this keeps going on my husband and I will be out in the streets in 3 years.
have you tried going thru the different foundations that are available for assistance thru grants with drug co-pays ? your Dr should be able to direct you with this.... if not Biogen should be able to help you.... when I was going to go on Rebif and could not do the co-pays Serono got me hooked up with that help...... these grants are income specific and they have limited monies for the year so it can run out ...
Yes, but because of a glitch in the Social Security Act, I cannot get assistance from the drug companies themselves, and the only thing left is a charity. I don't qualify for assistance from them because even though we are both disabled and not working we are together above the income level needed to qualify. These charities look at your combined household income and won't divulge what the income requirements are. Even if you can qualify, though, these charities are so in demand that even if you find one that covers your particular med (not all of them cover every med) once they are funded the demand is so high that they run out of funding usually within a week. That's why I put a petition on change.org, which I hope will change this situation so that patients like me can get help directly from the drug manufacturers and not burden the charities or the taxpayers! If anyone wants to see or sign the petition who hasn't, please see prior post! It contains a link straight to the petition! Thanks so much for your support.
I think it is wrong the way you are all treated in the states. In this day and age anyone who needs medication should not be refused, after all we are talking about human life. I hope the petition has an impact for you all. I dread the day when the NHS falls. Hang in there, God bless
Thanks for your support, Jimeka. I have heard great things about the British health care. I think it is just disgraceful that in a country like the US people have to choose between supporting their families and getting their medications. And it does happen!
This has been my life for over 9 years, even though I wasn't diagnosed until 3 years ago. I can go weeks without pain, fatigue or even a twinge of vertigo, then I wake up and Boom! I'm falling over air and feeling like I was hit by a truck. These "spells" can lasts a day to weeks for me. I keep a cane in my car, and my walker is always in my bedroom jsut in case. I have learned that these relapses can be aggravated by heat, stress or diet. For me it's the seasons changing, because I have different allergies. My hardest times of the year are February and around now. I suggest keeping a journal of symptoms for a full year and you may be able to pinpoint a few factors for yourself.
Hi, Fee09. That is a great idea. You are lucky that you go for long periods of time without any symptoms! So how do you know if you're just having a flare or if it's a relapse that requires treatment?
I have flare ups about every 3 weeks that I've learned to live with, but the relapses are very hard to handle. I tend to wait a few days to see how I'm feeling, but ultimately if I get to where I'm falling or I can't track my thoughts I will contact my doctor. I've been hospitalized with bouts where i couldn't walk or I was so uncoordinated that I couldn't take a shower on my own. I usually get tremors or bad pain before a relapse. Or at my worse I've had stutter spells with tremors and difficulty swallowing, I went straight to the ER that time. They think it may have been a TIA or mini stroke.
I just spent four days at an MS conference with 23 other MS patients and our care givers. Many of the other MS patients had one or more of the same symptoms as I have. I don't have any vision problems but almost everything else. The conference taught me that I am not alone and I am not crazy and there is hope and plenty of new research on going. They also taught us how to conserve energy, how to exercise and how much and stretching is very important. We all admitted to each other that we have good and bad days, never knowing when they would come. For me heat and or stress tend to make for a bad day. Also multiple days of heavy activity contribute to bad days.
The heat makes me feel like a wet noodle!!! This past summer taught me a lot about my tolerance to it.
I feel the same way. My days are similar but one minute I feel fine and the next minute I am so tired that I have to lay down. Some days I walk with a cane and the next I need my walker. This disease has many different systems... One day you are fine and the you can't get up. Keep your head up and know that God is in control.
Amen!
No, it isn't crazy, it's MS. Symptoms come and go for no apparent reason. I just saw a video from the NMSS about fatigue, and it said that fatigue can come over an MS patient at any time and often very suddenly. One day I will wake up and be tingling all over, and the next day I am completely numb again. No rhyme or reason. The only absolute triggers that I have found that cause either a flare or a full relapse are stress and prolonged exposure to high heat, such as getting into a heated pool over a certain temperature (like in the upper 90s or over) or a hot tub.
Hi Sukie, I have the same triggers. If I get too hot I go all weak, stumble, my right hand goes numb, my right leg has difficulty picking up so I trip a lot , then if I get stressed out, usually caused by depression that the ms causes, if you get all 3 at once then look out. I do and say things that I don't know where it comes from, I am not me, I become this tear filled monster, I even asked my husband for a divorce, so he was free of me. Sometimes I feel as though I am a burden, do you ever feel the same way? I have more self pity parties than I have ever had in my life. I think acceptance of the fact I have ms and there is nothing I can do about it, I am stuck with it, but it sure does hurt at times. Last night I felt as though someone was sticking a red hot iron through my heal and into my calve muscle, it sure does hurt, physically and emotionally. Sorry for ranting, God bless Jimeka
Don't apologize, Jimeka! This sure is the place to do it. I tell you...being stuck with the uncertainties of how everyday is going to be is beyond heartbreaking. I've become unreliable, and iffy. It makes plans hard, and I suck out of a lot. Sucks... I just want my old self back. Apparently, that's too much to ask for...
Jimeka, if you can't rant here, where can you rant? Sometimes my skin feels like it's on fire and my nerves feel like they've been plugged into an electric socket. I know what I want to say but I can't find the words, and I get very emotional and teary for no reason. I often feel as if I am a burden, and that's why I stopped going horse camping with my friends because they would always have to take care of me. I feel that often my husband just doesn't get it and then I get upset. When he had his stroke, I worried over him like a mother hen, but he kind of treats my MS, and its flairs or relapses, like they're just another hiccup in the road of life. Maybe he's right, but honestly, sometimes I feel like I am entitled to a self-pity party. I didn't ask for this rotten disease (like anybody every would) and even though I know that there are people far worse off than I, that doesn't lessen my pain. And when I do feel rotten, I do expect some extra attention and I think that I deserve it. We've been holding each other up since 2010, 5 years after his stroke, when I got my dx and realized that I could no longer be the only healthy one. He now suffers with horrible arthritis, but doesn't often complain, but neither do I, even when I am miserable. We have had a number of discussions about how I feel that he just doesn't get it, and it often ends up in arguments, because I feel as if I just can't tell him how bad I am really feeling when he has horrible pain, too. I think we just approach our diseases differently, and our ways seem to conflict. But I guess we are double burdens to each other. I guess we'll just have to try and figure it out and come to some understanding. Urgggh!
Thank you replying. My husband is great the majority of the time, but if I start a depressive argument, he gets mad, he actually shouted at me yesterday, though I probably deserved it. He told me that I wasn't the only person with ms, I didn't ask or deserve it, but I have gotit, so get used to it. I think because I did say that because of my belief I cannot take my own life, but I said what is the difference, hell or hell here on earth. I think I made him mad. I find that when you are down your mouth is capable of saying anything. On good days I love everything, but my youngest son got engaged on Sunday and I cannot even get excited about that, I guess I am on a ms downer. I used to ride a lot, and I had my own livery yard and look after other people's horses, now all I can do is look, it's very frustrating. I would love to be able to go horse camping, it sounds fun. Have a good day, Jimeka
I have the same triggers.
Hello, my days are up and down. One minute I feel fine and the next minute I don't feel well. I go from wearing a knee brace to my cane to my walker.
No matter how I feel I know that God is still in control.
Emotions and MS
The Darker Side of life with MS
Hot flashes and MS
Brain Fog and Words
