Multiple sclerosis (MS) is a chronic disease which affects the brain and spinal cord. MS can cause a variety of symptoms, including changes in sensation, visual problems, muscle we...
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looking to hear your stories about your episodes..
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First of all let me say I am so glad to have found this group... It is so comforting to read that I am not alone out there and people honestly GET IT... who don't just say think positive.. it will be ok.. you'll get thru this. But people who know what each day is like and how it turns your world upside down.
I've been having my moments the last couple of days just being recently diagnosed. I honestly believe it is not the worst thing that could happen to me and there are alot people out there who have it a million times worse. I know this... but I have my moments. This is my first 'episode' of MS and it has thrown me for a loop. It is just frustrating to lose control and need to depend on someone. I know each episode varies and it is different from person to person... but I was wondering about your experiences with them. Do you have them often? How do you deal with them? I woke up about 3 weeks ago with pins and needles and it got to the point where it was hard to walk. Both of my legs feel 'dead' from above the knees down. I can walk but it feels like I am dragging 200 pound weights on each leg. Getting up off the couch and walking to the kitchen leaves me out of breath. I can't stand without holding onto something or else I feel like I will fall down. I just want to know it will eventually go away and I can go back to being 'me' at some point. I am staying with my mom currently until I feel comfortable doing things on my own. Driving is a definite no no right now and I think this loss of independance is bringing me down so much more than the actual diagnosis of MS. I am 30 years old and used to doing things on my own. Now I am back livng with mom temporarily... and I need help with even the smallest things like putting on my socks. I was in the hospital for 5 days getting infusions of steroids and I think they made me a little crazy. I have been out of the hospital for a couple of days now taking a much lower dose of the steroids and getting some sleep... so I feel like I am getting better emmotionally anyway. The physical aspect is hard. It is frustrating to not know when I will be feeling like myself again and doing all the simple things I took for granted on a daily basis. The not knowing scares me... and there is nothing I can do about it. :( I go back to the neuro on Monday to discuss which drug we are going to try and all that fun stuff.... I just want to be me again... the me from 3 weeks ago before my life was turned upside down. :( Posted on 03/27/08, 06:03 pm |
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Just curious, Ddread, who's your Goddess archetype?
I used to meditate with Zeus and Venus in mind. LOL. It's true, although I didn't pray to them actually. I just meditated on their attributes while I connected to my higher self. It seemed like I had more love in my life when I was tight with Venus. The rest of the people here are probably saying, "Those pagans are going to burn for this." Let them believe what they want. They'll learn the truth soon enough. Well, I do pray to Jesus too sometimes, because I believe he's in the Godhead. I also talk with my guardian angels (light beings, I prefer to call them), spirit guides and God directly. So that's part of my theology anyway. Peace always 
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Duke, darling... TRUTH is TRUTH no matter how you slice it... My favorite Goddesses are Artemis (virgin hunter), White Buffalo Woman (for whom I've named my farm--we found an arrowhead on the farm the day we signed the final papers, for Goddesses sake), and Innanna (from Sumarian because I'm shaped like Her quite frankly--plus she resurrected from the Underworld, long story)...
I seriously have a plastic Buddha on my dashboard, and I believe He has protected me. Anytime I'm in a driving situation, I always say, "Oh Jesus!" I'm a devotee of Him as well. Only in America are we to choose just one diety and faith. I'm sure whomever I'm forgetting will forgive me. Lastly, let me not forget my brother Billy who suffered MD and died at 21 yrs. in 1989. Billy is ALWAYS with me... It's all good, and it certainly helps me not to be judgemental in any way... Maybe just naive at times... xoxoxo Cj
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Ddreaded (CJ), if you're built like the Goddess Inanna, you're all woman. Hubba, hubba.
Shake your Goddess money-maker!
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It gets better! I go hit hard too when they first diagnosed me - numbness/tingling, couldn't write, walking was difficult, then there were eye problems and vertigo. It was a mess. I didn't get a steroid boost then but jumped on rebif right away. It was about three weeks before the vertigo went away and the numbness and tingling faded slower, over about two months.
Steroids really stink but if you have to have them again - at least you will know your pattern! I managed to re-paint 3 rooms one treatment, then slept the week after. Hang in there, it's information overload now, but life will be as 'normal' as you like it soon!
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Hey,
I am so glad i finally found this topic. I was recently diagnosed in 2008. As a writer, my career was abt to reach new heights, now showering more than once a week is considered a gr8 week for me. The "abc's" of the meds didnt work, the MS specialist is abt to start me on Tysabri. OMG the doctors,,, i suddenly have a whole team. I get inundated with info almost daily, most imptly being no heat or stress. Well, i live in South floirda w/ no income and prices rising. Today, im supposed to meet a friend i havent seen in abt 25 years, talk abt people NOT understanding, highs today are supposed to hit the 90's feeling like high 90's because of humidity and she isnt understanding the MS and heat. the most frustrating thing is the isolation and lonliesness I feel bc as someone previously stated,, most just dont get it! any info on how any single person dealt with their first 3-4 mos of diagnosis wld not only be helpful, but help me keep my sanity as well! thanks! we will get this b4 it gets us!!!
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Welcom Treelee! I just wanted to let you know that I can soooooo relate to your story. I too cannot walk most days, or hold onto walls while I waddle. Also can't drive now. Here's the diff...my docs don't know what's wrong. My MS tests all came back negative. I stay here with this group because 1) these guys are GGGRRREEEAAT! and 2) finding people you can relate too in times like these really help me to cope with the unknown. --ang
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Hi Treelee - I know it is infuriating to get something when they don't know why and don't know where it's all going.
I have the issue with putting on nylons. Left leg is weak so I start with that one first and then it seems I can get the other. Guess it's a matter of seeing what works and what doesn't. A huge difference may be in allowing yourself a little bit of grace for the fact that you do need to adjust where necessary. That is hard. For example, I just canceled the lawn service, knowing full and well, it will take me 2-3 days to get through getting my lawn cut on my own. Family meals - well, there is definitely no shopping, chopping and cooking all in the same day anymore. Those are things that need planned out for me now. Suppose it's a lesson in planning too. Remember, if you need, second opinions from other doctors are expected. Glad you found this site! Lorrie
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If you are an independant soul, accepting help is a real big change. Not being able to drive is a biggie. I so feel your pain. But You will get better. It just an episode right now. You are still the same person, but your life will be different, not bad, just different.
Hugs to you.
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First of all thanks to everyone for their replies. And thanks for bringing this post back up to the top where I could read it again. I've been having down moments here lately... but to read how I was almost 2 months ago compared to now is a wake up call. I am so much better now... no where near where I was before my diagnosis... but I am getting there slowly. I am able to do more things than I was a couple of weeks ago.... Still can't drive.. and I think that is the main thing that gets to me. It's hard to let myself depend on some one to taxi me around and not just get up and go when I want to. I have really been trying to be positive but I still have my days where it gets to me. Other than not being able to drive I think the fatigue is the hardest part right now.
I just want to say I love this group. I hate that you all have to go through this too.. but it is such a comfort to know there are people out there to share their stories... answer questions.. or just bitch about MS to. I hope you all are having a good weekend ;)
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Welcome to DS! Before I joined DS, I felt very alone and isolated because NOONE could relate to what I was TRYING to communicate, not even the docs. In 2003 I got a dx and was so pleased to GET a dx...something I could follow and research and try to understand. The doc just looked at me and said, "OMG you have MS!" And she added that I've had MS since (flipped my mound of medical paperwork back throughl...) holy cow...1977!" And noone could figure it out, cuz the symptoms were not obvious.
I was a 7th grader in 1977. Full of life, zest, energy, quite the tomboy who never sat down,...climbed trees, played sports with the guys without thinking twice about it...and then SUDDENLY one day in 7th grade...POOF, NO ENERGY! Followed by my left side first get tinglies and then going numb. For years it has been on and off with flare ups. Most of the time could NOT keep up with classmates let alone my endless years of having/holding a job struggle. I have had off and on mobility with my arms, legs, speech, swallowing, walking, thinking, etc. Now I am learning to deal with "bobblehead". Flare ups come and go. Noone knows how long they will stay. Noone knows the intensity the symptom will flare to. But you are you. Some days you may need help. Other days you may do just fine. I have had days where I havent been able to do anything. Then i have had days where one would NEVER know I have completely crippling days. At DS you are cared for and understood here. ) The people here are awesome. Some days its one day at a time, some days it is one minute at a time. On DS I was introduced to an article called The Spoon Theory. Wow did it help me out ...maybe it will also help you too. I'm trying to remember the link to get you there if you havent read it already. Excellent read. Hugs to you!! Take good care Ellen
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