MS .... it's the pits.
But - I guess that isn't going to stop me from doing it-- because I continue to write. 
I have been doing pretty well in terms of my MS. No major issues for a few months, even made it through the stress of the holdiays with just minor problems. Things changed on Thursday of this week. Major congnitive issues and my whole right side (face included) is painful. Weird-- it's numb - so how can it hurt so bad???? I am a trainer- and when I have congnitive issues, it is really stressful. Can't think of what I need to say... can't remember what I need to remember... can't make my mind work. Oh well---   |
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I wish there was something more to give.... |
| Don't be embarrassed. MS is a serious disease even though one can live and function quite well for many many years. You are experiencing typical symptoms and may indeed be caused by stressful Holidays and family. In time they will reduce and your mind will clear, you face will return to normal. It's OK to be frustrated, lack of mental clarity is hard to deal with. We are here....let us know how you are doing. |
| I can hardly imagine what you are describing but it sounds horrible and you have my sympathy. Is there any treatment for MS? |
Valerie wrote: I can hardly imagine what you are describing but it sounds horrible and you have my sympathy. Is there any treatment for MS?
I take a daily shot... Copaxone. It helps minimize additional damage being done to the nerve coverings ( mylen) and hopefully reduces the affect of plaque. Plaque floats in the brain and spinal column-- a result of the mylen being worn away as the covering. My doctor says that during an "episode" it's like my body is a "Snow globe" and the snow is the plaque floating around. Until it settles, there are any numbers of problems. I guess somebody shook my snow globe on Thursday. hahahaha Now you know more than you ever wanted to about MS... |
| Wow! That is amazing imagery and really helps me get a sense of what you are talking about. It sounds really whacky and I am sorry it is painful, etc. Hope it settles down soon! |
| I'm sorry to hear your not feeling well. I had an Aunt who suffered from MS. Don't feel embarrased to talk about it....sometimes it helps to just vent and get stuff off your chest. Maybe now that the stress of the holiday season is over with...you'll feel better.
Take Care!! |
| While I don't have MS, I can share some of your pain. My fibromyalgia has been really bad this week which must have something to do with this ugly damp weather we are having.
When was your MS diagnosed? How do they determine a diagnosis? |
| Lori lots of these
Hope it settles a bit for you soon  |
Stacy wrote: While I don't have MS, I can share some of your pain. My fibromyalgia has been really bad this week which must have something to do with this ugly damp weather we are having.
When was your MS diagnosed? How do they determine a diagnosis? I'm sorry to hear your fibromyalgia is flaring up. I know that is miserable. I have a friend who suffers with the condition, and I know when she has a bad time, it is no fun. Hope you get to feeling better soon!! It will be 4 years in August since I was diagnosed, although the process started in April of that year. I had really weird things happening--- racing speech, blurred vision, sitting in the driveway unable to remember how to get to my destination... bizzare. At first, I thought I was loosing my mind. Then I had an episode where I saw things LONG AND SKINNY- and couldn't swallow. That is when we knew I had real issues. Dx is long and painful. 15 tests and a spinal tap later-- I got the news. MRI's and spinals are the most conclusive - but not always. I had what they call "O" bands in my spinal fluid. I had 15 bands of inflamation. That number is large-- and at some point they fully expect I will show signs of lupus as well. Ha- MS with a Lupus chaser!! I really try to let it roll off my shoulders. We have a full life--- and for the most part, with adjustments I get along just fine. Fatigue, numbness and cognitive issues seem to be where it hits me the worst. I am thankful everyday my issues are managable and minimal. Stress is a real trigger, and, with the family stuff I imagine that plays a part in the problem right now. Change in weather is also a factor-- and summer is the WORST. Heat makes the plaque "bind". You want to avoid that at all costs, as it can cause irreversable damage. Limping, dropped foot, all are the effect of not rebounding from an "attack" ... Again- lots of info |
| Oh my gosh, don't ever feel embarrassed for talking about your MS. It's an extremely tough disease. My friend's mom suffered with it for many years and I know how stressful it was on his family and on her. To make matters worse, for her, her insurance wouldn't cover her treatment because she worked for some company that never updated their health insurance plans in 20 years. It's a long story but it wound up wiping the family's life savings out. But, I digress. I just wanted to express my sympathies for what you're going through but I'm glad to hear that it sounds like you've got a good attitude and you're handling it well despite the setbacks. I hope things start going better for you soon. |
| Lori, sending you lots of virtual hugs! I hope the episode passes soon! |
| Lori,
Sorry you are dealing with these issues. 
I just got over a Fibromyalgia flare up that had my hands looking like an old woman with arthritis, all curled up and ugly looking. I couldn't even handle doing a button on a shirt. Luckily I don't have to wear them.  I did have a few problems with my buttonfly jeans.
(for those that don't understand what a Fibro flare up is, it is extra symptoms on top of the pain, spasms, insomnia, neurological problems ..etc that is present 100% of the time) Now I'm having major numbness in my hands.... I guess thats better than crippling pain I was having. I try to look at the bright side of things.
For an hour this morning after I woke up my right hand was completely numb.  Fun, Fun, Fun!!!
I hope you get some relief soon!! |
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I hope you feel better soon! |
| Lori: I am so sorry that you are dealing with this. Do not be embarrassed about sharing your frustrations with us...we are your friends after all. I do hope this episode is over quickly so you can get back on with your life as best you can.
I know what you mean about how something numb can hurt so much. Dealing with shingles has really opened my eyes to that kind of pain. Also to lose the use of the right side of your face, I know how it feels and it is scary. Your face will come back, just hang in there. My daughter is 32 and suffers with CMT, which is a muscle/nerve degenerative disease...so I have an incling of what you are going through. She also has been having a rough episode recently. I can only guess the stress of the holidays have brought it on for all who have these types of issues. In your case, sometimes, when the stress is over that is when the symptoms rear their ugly heads. Please take care of yourself and I hope this episode will be over quickly. Sheepie and Aussie and a scratch, scratch from Pearl.  |
| Lori, I think you have an amazing attitude and that must help. Never be embarrassed to talk about it here, even if we can only offer a heartfelt hug you know we care about you.
Holly |
| Aweee... I'm so sorry about your pain and the current change it took. If anything, we're so glad you feel you can share your concerns and experiences with us. Hope things start feeling better soon. *big hugs* |
I can really say I know how you feel, I do not have MS but have fibromyalgia and chronic Lyme disease which resulted in chronic arthritis and cognitive issues along with short term memory loss. All my friends are very supportive but when the words won't come I have to say what is the closest and they guess.............Sometimes it is good to vent about these things and in a small way you feel better (I feel better already  ) I hope your flareup settles down and you can get back to where you were.
I love the snowflakes falling or am I having visual Hallucinations?? (did I even spell that right??) |
4dognight wrote: I love the snowflakes falling or am I having visual Hallucinations?? (did I even spell that right??)
Snowflakes, must be the hand of Ron. Nice touch. 
MS, whew, the affliction that just keeps coming back with more surprises. I have a dear friend that manages MS with a positive attitude even when she has no idea what each day will bring. A person has to be incredibly strong to keep a smile on their face when nature messes with you daily. My friend came to visit a couple years ago, before our Sheepie Oliver passed away. Ollie was notorious for stepping on people’s feet. He wasn't a lightweight at 88lbs. Once he stepped on the foot, he didn't move off quickly. One morning shortly after my friend came to visit, she mentioned one of her MS issues was the right side of her body would "freeze up" without warning.  Apparently she has a pressure point in her foot that helps release the immobility.
The previous evening, I had stepped out to run some errands, and left Ollie at home with my friend. She decided to go upstairs to her room and snuggle up with Ollie and a book. Half way up the stairs, she froze. Ollie looked back, saw that she wasn't moving and came back down the stairs to her. In the process, he stepped/stood on her right foot. It did the trick and she was able to gain just enough movement to limp up the remaining stairs. She had another occurrence during her visit, and sure enough, Ollie to the rescue. My friend was convinced he knew what he was doing. I didn't have the heart to tell her he just hadn't figured out personal space. Gentle Lori, and hopes that the stress stays low in your life. |
| Oh, Lori, I'm so sorry to hear this and the only thing I can send you is heeling !
Quote: Snowflakes, must be the hand of Ron. Nice touch.
I love these snowflakes! I had to watch where they disappear... |
Sheeps over Aces wrote: 4dognight wrote: I love the snowflakes falling or am I having visual Hallucinations?? (did I even spell that right??) Snowflakes, must be the hand of Ron. Nice touch.
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| That's what we are here for, to listen and provide support!!
I hope you feel better soon. My Mom had MS and I watched her struggle for years so my heart goes out to you. |
| Feel free to complain to us all you want!
My sister has MS, so I know it's not a fun thing to have... |
| Lori, i am so sorry that you are having such a horrible flare-up.
the cognative issues ARE the worst...are you having the dizzy spells or slurring a bit? Those are the most embarrassing....especially the slurring..... i havent been officially diagnosised but i have the majority of the symptoms...so i truely truely feel for you. have you been exercising? that usually has helped me in the past... fingers crossed and good thoughts for you.... and you can whine ANY time you want.....i sure dont have the monopoly on that...hehe xo, |
| Thanks for all of the well wishes. Just venting can help at times. I had NO idea so many of you had similar / same issues, or, had relatives that are affflicted. It amazed me everyday how many suffer from MS or related autoimmune problems. Prayers and hugs to all of you out there suffering. It can be the pits, and I hope you feel better soon!!
I have had a very heavy schedule the last two weeks--- everyone waits until after the holidays and then wants it done NOW... In my job, I train our customers--- so I need to be on the ball. I wonder in the last few training if they've wanted to check my brief case for vodka! Slurred speech, dizzy, racing speech.... Ha-- For all that I should at least get to feel like a HAPPY drunk.
The worst for me is the eye sight issues. I was at a training this morning, and could barely see the print drivers that I needed to train on.... Of course this is GOOD thing at times. When I look in the mirror, I don't always see the wrinkles that are appearing, or the hair that to be refreshed with highlights And John looks twenty again.
Then- my "episode: gets better-- I have wrinlkes and dark roots, and John isn't twenty anymore. Pros and Cons to everything in life I guess!!  |
 Lori, I'm so sorry you've been having a recurrence of your MS.Chronic diseases like MS. Lupus, Arthritis etc. run a course that is not necessarily linear. Stress can often trigger a relapse but the good news is that with care, MS can go into remission too. It's a cycle but you have some control. My warmest best wishes to you for a return to good health. |
| Hi Lori - I've been busy the past few days and haven't had a chance to check in here much, so I'm just reading your post. Hope that you're feeling better by now and please, don't ever feel embarassed to vent to us. We care.
Thanks for the snowflakes, Ron! |
| Hi Lori,
I hadn't realized you had MS and now more in awe of you than I was previously. I wouldn't have guessed that you have it, especially when reading post about your busy lifestyle. You are amazing and I'm in awe! Vent away! We're here for you!
Marianne |
Marianne wrote: Hi Lori,
I hadn't realized you had MS and now more in awe of you than I was previously. I wouldn't have guessed that you have it, especially when reading post about your busy lifestyle. You are amazing and I'm in awe! Vent away! We're here for you! Marianne How sweet.... Thank you.
When I was dx my main concern was the impact it would have on my nieces and nephews. I was afraid that they would see me as 'different" if my symptoms ever affected the things that we do all the time... hosting family dinners- babysitting etc. Of course I was also concerned about John, and how my fatique would impact his work load. Taking care of 25 acres is not easy--- and I am glad he enjoys mowing
We sat all of the kids down and explained in their language what was going on-- what they may see ( shots - meds) and assured them I was still the same "ole Aunt "Buckie" . Then I made a promise to myself to put it in perspective and get on with it! Adjustments and a wonderful husband and family has allowed me to laugh about some of the issues. And when I do get ouchy--- they call me on it - or comfort me, depending on the situation. Last summer we went to the fair with my nieces that are 16. I heard them in the back seat "planning" the day--- thinking about how we could have a good time without me overdoing. With love like that - they deserve for me to be as good as I can be. Little pains and annoyances just don't seem as big after a big hug from someone ya love! As long as I can - I hope to have the attitude that even though I have MS- it doens't have me!!
 hehehe
Again... I am chatty.. sorry! |
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