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  1. #1
    Join Date
    Feb. 16, 2006
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    718

    Default Horses and MS

    I was diagnosed with MS in May. I have lesions on my optic nerves which caused scarring on my retinas which leaves me with blurring vision. I have weakness on my left sid I have balance issues and walk with a cane alot.. I have cognitive issues - why did I come here and what was I looking for? LOL My brain can not keep up with my eyes. The eyes black out when I ride if the horse spooks for about 2 -3 seconds and I just hold on. Same if I turn my head quickly. I am so tired of the ms train.

    I have 14 very fast, very quick moving horses, that disappear at the the least problem when my eyes black out. I am trying to get through this...I keep thinking I will wake up and the world will be right again. I just needed a place where you understand me and my horses. Dr. told me on my first visit to go ahead and sell them and move to the city. Seriously! I was told to reinvent myself.

    I was a professional photographer doing animal portraits for people, I volunteered at SPCA and took there animal photos for 5 years. I was a horse show photographer. Just having a rough time dealing. I can no longer see the viewfinder of the camera. I know no one can help me, I just needed to get the words out.

    thank you

    K
    The View from Here



  2. #2
    Join Date
    Nov. 15, 2007
    Posts
    529

    Default

    Hi K:

    I just wanted to give you a virtual hug. I was diagnosed with MS in 2001. I also have Addison's disease and Hashimotos. My quality of life is dependent on "staying ahead of the curve" with my medications. I have been able to resume riding, but have greatly adjusted to the new reality of weakness, balance issues, etc. I ride once or twice a week at the most, and only when temperatures are optimal. I am still able to care for my 3 horses and pony myself, but do wonder if the day will come when that won't be possible anymore.

    My advice to you is to keep horses in your life as much as possible. They have been my lifeline. I also advise you to be your own advocate in your health. If a doctor tells you something you don't agree with, seek another opinion. I had doctors tell me there was nothing wrong with me, when in reality I was very near an Addison's crisis that could have killed me. Because I was forceful and pushed, I got the diagnosis that probably saved my life.

    I cannot fathom how your loss of vision is affecting your quality of life (mine is not affected so far). However, I met a woman shortly after I was diagnosed who was completely blind from MS, and regained her sight with the proper medications. As I recall, it took some experimentation to get there. So please, seek out the best medical care you possibly can, and don't give up!

    Feel free to PM me if you'd like to talk more.

    Take care,
    MJ



  3. #3
    Join Date
    Apr. 20, 2006
    Location
    Between a rock and a hard place, WA
    Posts
    1,341

    Default

    Nothing to add, but I'm so sorry you're going through this.
    www.moranequinephoto.com
    "If I am fool, it is, at least, a doubting one; and I envy no one the certainty of his self-approved wisdom."
    Byron



  4. #4
    Join Date
    Dec. 2, 2004
    Location
    Eastern Ontario, Canada
    Posts
    1,470

    Default

    For your camera, there are such things as remote viewfinders, for example this one: http://www.amazon.ca/Adorama-Aputure.../dp/B002RBQ52C

    I know that going out and taking some photos really helps me when I'm not feeling all that well. Also, just watching my horses eat is very relaxing, and giving them hugs, and brushing their manes and tails.

    Best wishes.



  5. #5
    Join Date
    Feb. 16, 2006
    Posts
    718

    Default

    Neat toy Draftdriver I bet they make that for a 40d.

    I love to take the photos this time of year. My herd are professionals at posing so I def. have to get out there and snap some photos. Funny thing is my timing is still good (I can get the pony jumping - tipped back on his hind legs perfectly) I just can't quite SEE the pony. But I shoot anyways and the pics come out fine thanks to auto focus. So like your the blur on the right! LOL

    As for my horses well, they are my joy. I have considered selling them, but each of them is with me for a good reason and most of those reasons don't really make them marketable. So they are staying for now. I was told I am not doing any damage to the eyes by riding even if they do black out so that is good. I just hold on tight.

    The kids went back to school, I am all alone here at the hosue and my brain is just working overtime. I see life fuzzy, I can't see things close up like my fingers and when I look at my toes I see the big toe, just not the little toes. I see things just not the details. I can't drive. I know things could always be worse, but this is my pity party and your all invited. Right now I am battling depression big time. So yuor my therapy.

    I thank you for that

    K
    The View from Here



  6. #6
    Join Date
    Jul. 13, 2011
    Location
    East Longmeadow, MA
    Posts
    3,460

    Default

    RU2U, what kind of MS is it? The relapsing/remission kind or the no remission but very slow decline kind? My Mom had the latter. There's a lot of treatment options out there for the former kind, not much for the latter. I can totally understand the depression. Be careful, take care of yourself, and do what you can do. Heat will be your enemy. Swimming is the best exercise.

    Hugs.

    Claudia
    What's wrong with you?? Your cheese done slid off its cracker?!?!



  7. #7
    Join Date
    Feb. 16, 2006
    Posts
    718

    Default

    I'm thinkin its the relapsing/remission kind I hope. I am in an experimental treatment program (ie. free meds!) Its kind of cool cause with this med you get an infusion once every 6 mon. or you get shots 3xs aweek. They are not telling me which it is but if you could get treated every 6 mon. that would be pheniminal. Funny thing is I have been a watering pot the last few days and had no idea why, well I found out its a side effect of the meds. Nice. So I have been a crying fool these last few days for nothing...

    I never took meds. always healthy and now its a whole new ball game. I am learning.

    As for heat OH had one of the warmest summers ever, my kids show at fair in July and I have a cooling vest but I still suffered sight changes. My eyes change every day so it mostly changes for the worse, it makes life intersting.

    K
    The View from Here



  8. #8
    Join Date
    Jul. 13, 2011
    Location
    East Longmeadow, MA
    Posts
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    Default

    More hugs. What people who aren't familiar with MS don't know is that it is a life changer, it is permanent, there is no known cure, and it is progressive. So get the very best medical advice you can get. I'd get a second opinion if I were you and if you are at all close to any universities with medical schools, check them out and find out what their neurology departments are like.

    My mother was very lucky in that she was diagnosed relatively late in life (around 50) and her disease progressed very slowly for a long time. She lived to 79.

    You also might want to contact the National MS Society, they are very helpful and have lots of information. I've been a contributing member for years.
    What's wrong with you?? Your cheese done slid off its cracker?!?!



  9. #9
    Join Date
    Sep. 7, 2009
    Location
    Lexington, KY
    Posts
    18,647

    Default

    I don't want to sound like a broken record, but, have you been tested for Lyme and if so, tested adequately? I know at least 3 people who were misdiagnosed with MS and turned out to have Lyme. I had Lyme uveitis, as did my daughter along with cognitive impairment. My daughter had complete paralysis of her left side for several weeks as a consequence of Lyme.

    Just a heads up to explore if you haven't already.
    "We can judge the heart of a man by his treatment of animals." ~Immanuel Kant



  10. #10
    Join Date
    Feb. 16, 2006
    Posts
    718

    Default

    Laura thank you for asking - I had an MRI that showed lesions on the optic nerve and then they did a spinal tap that showed an increase in protein levels, so yep its MS, no doubts. Wish it were anything but.

    The meds I am are supposed to stop the MS progression in its tracks, we'll see. I started in Aug. and it takes I think 12 weeks to get in your system completely. So we'll see.

    Its so nice to know there are horse people out there that know what I am going through, nobody understands horsepeople like horsepeople.

    Funny of the day: I love cognitive things. Poured a glass of milk and looked over and yep there was a glass of milk sitting on the counter. I have no recollection of pouring it. Good thing I am not one of those people that believes in ghosts and paranormal. Its bad enough when someone screws with your mind, but then you find out its you screwing with your mind! LOL
    The View from Here



  11. #11
    Join Date
    Jul. 13, 2011
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    East Longmeadow, MA
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    My father and I went to a seminar on MS and cognitive issues. Turns out there are several different types of issues that can show up.

    MS sufferers ( and especially those with horses) have a very special place in my heart. please keep us up to date, OK?
    What's wrong with you?? Your cheese done slid off its cracker?!?!



  12. #12
    Join Date
    Feb. 16, 2006
    Posts
    718

    Default

    So had a Dr.'s appointment today...She says I really don't want you riding, she said what happens when it goes black, and it doesn't come back at all?

    She feels that its a loose wire in the brain involved with the optic nerve.

    Good point and it could be.

    I have a neuros appointment next week so we'll get his opinion.

    I am just concerned if horse takes off bucking lights black out and I can't see to get the horses head around to stop bucking. With my one guy who works harder at getting out of work then he would to do the actual work this could happen.

    So finally the brain is starting to say "What if?"

    and this is how you get psyched out about riding!

    It seems like when you CAN'T ride is when you really want to ride - its just so pretty out and we just put in a new trail in the back woods.
    The View from Here



  13. #13
    Join Date
    Apr. 28, 2010
    Location
    North Carolina
    Posts
    264

    Default

    I have MS. I take Bilberry capsules for my eyes, every time my optometrist sees my optic nerve it is fine. I got told to keep on taking the Bilberry.

    Luckily I was an experienced rider before I got diagnosed, and thinking back the MS had been affecting me badly most of my life. I have BIG problems with limited energy, more moderate problems with my balance and coordination (depends on how tired I am), I do not have a proprioceptive sense, and I have hand tremors, varying muscle weaknesses, bladder problems, etc., ets., etc.. I walk with two canes. It is a true hassle.

    I have just gotten the RS-tor Rider Security Aid (http://www.rstor.co.uk), and for the first time in the eight years since I started riding again I felt secure enough to go on a little trail ride. Since I can hold it every minute I am on the horse I do not worry as much about shying or bolting. The RS-tor does NOT tie you into the saddle, the rider just holds it in their hand. I felt secure enough so I could relax and enjoy my trail ride and my mind did not freak out when my horse acted up.

    Riding horses is the only reason I can still walk on my own two feet (yes, with two canes, but at least I can walk.) On horseback I have been able to SAFELY practice losing and regaining my balance, which really helps when I start losing my balance walking. I can practice coordinating my arms and legs, and I can get exercise without having to worry as much about losing my balance and falling. At one stable where I get lessons (hunt seat) I am riding two Arabians. I tell the horses about my MS and how it affects me and most of the horses have been very kind to me. I really lucked out with my riding teacher, she does not let me get out of good position, and she does not mind correcting me even after six years of riding with her (I was an experienced rider before diagnosis.) Taking riding lessons is a lot cheaper and a lot more fun than going to a physical therapist!


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  14. #14
    Join Date
    Feb. 5, 2002
    Posts
    2,048

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    Do you have someone you enjoy riding with, who could pony your horse from theirs? then if your vision cut out, you wouldn't be completely on your own, plus you get the benefit of hanging out with a friend and a couple horses! it is a beautiful time of year to ride, maybe the question is finding the right horse and the right circumstances to continue doing it safely.



  15. #15
    Join Date
    Nov. 28, 2006
    Posts
    155

    Default

    It had been a while since I came on coth and I'm so happy to see this thread!
    RU2U you said it right...nobody understands horse people like horse people
    I was diagnosed with MS a year ago but had symptoms 1.5 yrs ago. My eyesight is thankfully not effective but I do have sensory (pretty much my whole body is tingling) and some balance issues. The irony of it is that I'm an RMT and I have tingling/numb hands. So like yourself my lively hood will someday be seriously affected
    How are you doing on your meds? I take one called avonex once a week, really not sure if it helps or not as I have had a small episode that lasted about a week resulting in tingling of my left hand/arm which was my good hand! I have another MRI coming up next week which I'm pretty sure will show more inflammation in new spots.

    Riding this summer was challenging as it was super hot resulting in weakness of my right leg but my coach is amazing and has taken me back to basics since I came to the conclusion that I will never be able to jump a full hunter course again
    Like others have said and I agree my horse is what keeps me going, I love her and she tries her best to keep me safe!

    It's great to read everyone's stories, it inspires me to keep going day by day!


    1 members found this post helpful.

  16. #16
    Join Date
    Jul. 13, 2011
    Location
    East Longmeadow, MA
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    Hi guys! good to hear your updates, please keep them coming. Hopefully with the advent of cooler weather you'll all be feeling better & able to ride a little more.
    What's wrong with you?? Your cheese done slid off its cracker?!?!



  17. #17
    Join Date
    Nov. 5, 2000
    Posts
    9,564

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    FWIW, I met a lady a few months ago at my chiropractor's office who was bedridden and blind from MS for a while. Not many of the meds the doctors had her on were helping much, and things were looking bleak, so she took matters into her own hands - totally changed her diet (went practically paleo), and supplemented it by "green drinks" she mixed herself with various herbal supplements. I don't know how long it took, but she gradually got better, can now see and walk just fine, and also drive. She is going to the gym 4-5 days a week (including working with a personal trainer 2x a week), and says she is healthier and fitter than she has been in 20 years.

    And will add that we have a USDF Gold Medalist in our area who has had MS for many, many years. I believe she actually earned her Gold Medal after she was diagnosed (maybe the Silver Medal, too - not sure). A friend told me she thinks staying active with the horses has helped her combat some of the debilitating effects of the disease - don't know if her vision was affected, though.



  18. #18
    Join Date
    Nov. 8, 2001
    Location
    Cambridge, IA
    Posts
    1,678

    Default

    OP, I am sorry for what you are going through. Being diagnosed with MS myself, I understand completely how utterly terrifying the diagnosis is.

    Diagnosed, what, 8 years ago (I don't keep track because I think that is sort of macabre, sorry.) Meanwhile, my life has gone on very well, primarily because I took matters in my own hands after diagnosis. I have worked with my neurologist and followed all his advice about meds. After the initial storm of the exacerbation passed, I changed my diet, added yoga, changed my job (to one I like much better, but that doesn't mean that the process to make the change was without angst) and did everything to reduce stress. I put myself first. I learned to say no to guilt trips and yes to helping myself and others. It has been an amazingly freeing change and sometimes I can even be thankful for the diagnosis. Here is what I have learned: One can not help others until one's own needs have been met.

    I am now medication and exacerbation free for several years.

    Meanwhile, I stay away from online MS boards which are usually full of a lot of very sad and scary, stressful stories, and I stay away from the MS Society (don't get me started) and look to the Swank Foundation (another google suggestion), am careful about what tv I watch (no crime drama, no bad news that I can't do anything about) read good books, stay positive and surround myself with positive people. I do what I can with what I have, where I am, (thank you Teddy Roosevelt) and let someone else handle the rest. I have also, for the most part, removed the negative nellies from my life (there remain a precious few weeds to cull yet) and make sure that my own occasional negativity is in check. This is not easy and takes time and discipline, but is so worth it.

    Parallel to that, I stay abreast of the latest MS research. Vitamin D has been shown to be VERY important in immune modulation, and afterall, MS is an autoimmune disease. Yesterday's Wall Street Journal had an article about high levels of vitamin D protecting against development of MS (http://online.wsj.com/article/SB1000...googlenews_wsj) and there are also very interesting studies that show that people who have a high vitamin D level in their blood have fewer exacerbations. Ride google like a rented pony and learn about the latest research and follow up. Be your own advocate, and don't freak if your neurologist doesn't immediately back you up, but show him/her the (peer reviewed, very important, that) research you have found and let them simmer on it. Meanwhile, make a plan, update you neurologist and do it. Neurologists have a lot of different diseases to keep current about so it is hard for them to keep abreast of all MS research. That is up to you. Nobody cares as much about your health as you do.

    {Amusing aside. I was newly diagnosed, but had entered a horse trial at the Kentucky Horse Park before diagnosis. With the help of meds, I was feeling good, so I went. On the way down, I read some research on vitamin D levels and dosages and left a message for my neuro to tell him about the research and tell him that I was considering supplementing myself with x number of units of vitamin D starting Monday and what did he think? I got a call back later that day when I was leading a course walk. I saw his number on my phone and briefly excused myself to talk with him. He said he thought I would overdose at that amount. I calmly countered with the amount of vitamin D a body receives in one 30 minute bikini-clad sunbath and noted that the amount I was supplementing was less. Silence on the other end of the line for a beat. "Well, carry on then! Let's talk in a month." Moral of the story. Educate yourself. Sidenote: some of the people on the course walk really wanted to know why I was talking about bikini-clad sunbathing!}

    An esoteric insight. When I was first diagnosed with MS, a very experienced neurologist asked me if I had children. I said that I had horses. He said how many and I detailed the many horses on and off our farm that I am or feel responsible for. He said that it didn't surprise him and he has noticed a trend that many people who are diagnosed with MS have a heavy burden of caregiving and may have let attention to their own health be on a back burner. I heard him loud and clear and made myself get out of the habit of feeling responsible for everything and trying to fix everything. Just an insight that has helped me.

    Finally, note that MS is much more common in the high latitudes. This points again in the direction of Vitamin D, which is made by the body as a response to sunlight. http://www.msrc.co.uk/index.cfm/fuse...ow/pageid/2325

    Educate yourself. Advocate for yourself. Recover yourself. Go you.
    Last edited by Camstock; Nov. 21, 2012 at 10:51 AM.


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  19. #19
    Join Date
    Nov. 28, 2006
    Posts
    155

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    Thank you Camstock for the Vit D link. That was one of the first changes I made, I now take 4000 iu as I had very low levels when I was diagnosed. Completely agree with not allowing stress into my daily life (sometimes easier said than done). But it certainly makes a difference for me and has helped in my marriage as well. I now take the saying "don't sweat the small stuff" very literally



  20. #20
    Join Date
    Nov. 8, 2001
    Location
    Cambridge, IA
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    Thanks Roxx. I forgot to mention that I have my vitamin D levels checked quarterly. Just a little blood draw, and so much information.

    Here is some information from a recent study about serum vitamin D levels (http://www.neurology.org/content/ear...fdec7.abstract) "Results: During follow-up (mean 1.7 years), 58 patients experienced a total of 139 exacerbations. Monthly moving averages of 25-OH-D levels were categorized into low (<50 nmol/L), medium (50–100 nmol/L), and high (>100 nmol/L) levels. Exacerbation risk decreased significantly with higher serum vitamin D levels: respective relative exacerbation rates for the medium and high-level category as compared to the low-level category were 0.7 and 0.5 (p value for trend: p = 0.007). The association between 25-OH-D concentrations and exacerbation rate was log linear without a threshold. With each doubling of the serum 25-OH-D concentration the exacerbation rate decreased by 27% (95% confidence interval 8%–42%, p = 0.008).

    Conclusions: Our finding that higher vitamin D levels are associated with decreased exacerbation risk in relapsing-remitting MS suggests a beneficial effect of vitamin D on disease course in MS. However, the possibility of reverse causality cannot be ruled out completely. Randomized intervention studies are therefore needed to investigate the effect of vitamin D supplementation in MS."

    Roxx, I supplement with 10,000 iu/day. Amounts up to 14,000 per day have been shown to be safe over the longterm. My serum vitamin D levels lately have been in the 80s, a little low according to the above study. When I was diagnosed, I had a 29.



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