This is a very common way of thinking in the MS world. If you are really nervous, then at the next appointment tell him that. No one can really predict how it will go for any of us. If your doctor is worried about side effects, tell him you are interested in copaxone. It usually has only local side effects. The draw back for you is that it does mean a shot everyday.
I am so glad your husband went. Did you get a chance to go have some fun? I know this is NOT fun but you have to do what you can. Keep us posted as always.
Wow,what kind of horse do you have. I love 'horsey people'!!! We have always had Quarter horses, but due to thats what we showed but then as they died of old age or got sold, I bought a TW. He was sweet but onnly a 4yr. old and pretty green. Normally I would have continued to finish him but my balance was getting so bad and I sold him. One of the horses my friend has here is a Walker and I am gonna go get on her today, shes well trained and VERY comfortable. I dont show anymore, just trails. I used to teach at a Therpeutic Equestrain Center years ago and I had a woman with MS. Her balance was very bad and she used a cane to get around, but she came faithfully and enjoyed it.
Anyway,,,still I am wondering...are there others who have been diagnosed with MS who are not started on treatment right away? Thanks Gretchen for you post. Cant wait to here about your horse. They are such comfort to me on 'down days' along with my dogs!~Hugs ,Katie
I’m so sorry to hear about your recent diagnosis. There seem to be two very differing schools of thought about starting the ms meds in early MS: the more conservative wait and see approach that you’ve encountered is also common with other very reputable neuros, such as at the Mayo Clinic and also at other MS clinics (including the one I currently go to). However, as you’ve read, there is a lot of new research that shows that starting meds asap is the way to go not matter how “mild” the MS may initially present. In fact, there is research that now supports starting meds after the first MS event (Clinically Isolated Syndrome), but before the clinically definite MS diagnosis is even made.
My situation is complicated at this point (CIS, MS, on Copaxone, off Copaxone, etc etc) and I don’t want to hijack your thread, but can say you’re not alone. I know it is very frustrating and scary when the “experts” disagree to this extent about something so fundamental and potentially life-altering. I wish there was some correct answer and treatment protocol that neuros would all agree on, but I don’t think they really know, and a lot of the research about treating early is still relatively new. Give yourself a little time to begin to come to terms with your diagnosis and how your current neuro is handling your treatment, and if you are not comfortable with the wait and see approach, then I think you should definitely seek out a second opinion.
In the meantime, know we are here for you, and let your critters comfort you. I read your other thread on family, and can say that I’ve found the unconditional and unjudgemental love that animals can give to be very healing and comforting in times like this. Please also let me know if there’s anything I can do to help. I have done a fair amount of research on the whole med issue in early MS and CIS, so if you’d like to look into this further at some point feel free to send me an email.
Hang in there,
Hi Gretchen, an Appy lover huh? One of my close friends has one, he's a big chestnut spotted one. I always stuck w/ QH because we were into Barrels team penning. I started riding more English over the past 10 years though now ( dont show anymore) and love it! I love posting and it helps build muscle in my legs even more.
My friend has a yearling here now and her 8 yr old ( i think) TW, both mares. I plan on riding the walker soon. We have a small farm and barn that has 4 stalls . Both of my sons used to show until they changed over to 4-wheelers, grew up and moved out for college..ect. My barn has become the RED-CROSS barn for friends who have injured horses and need extra care. They bring them here, I doctor them up until they go home again. I also keep horses for friends if they are going on vacation, or if they just need good pasture ( as is the case now with the two that are here now). I am considering getting into Rescue horses next spring, depending on how well I am feeling.
Have been having very bad fatigue recently, legs very heavy. The Doc did up my amantadine to twice a day and I just started that so it may take awhile to 'kick in'?
I want to thank you for taking such time to respond to me with support. I have read many posts that you and Rhonda have helped so many people ...what a blessing you both are to all of us here who are new and old to MS. Hugs ~Katie
Yeah I have a big old spotted horse. He is a great guy. In order to keep him in reasonable shape I jog him for a warm up then I do push him into a nice big forwar dressage trot. I make him collect and use his tummy. Of course that makes me post and use my legs. You are right, it is a great workout. I have tremendous problems with chronic vertigo and I cannot turn and look around when I walk. I CAN do this however while riding the horse. It is very therapeutic. I do a lot of turning and looking over my shoulder and stretching while he walks. It feels so wonderful and almost normal.
My biggest difficulty at the stable is walking on that uneven footing. My horse now knows that I am going to grab a big maneful of hair and hold on as we walk. He goes where I tell him to go and I don't have to really lead him. It is pretty cool. He was very adaptable.
Hi there, that drives me crazy when they say you have a mild case of MS so won't start you on any of the modifying meds!!!!!!!
I know that you have recieved many posts on this, but heres another one - this is sooooooo wrong....start a treatment program right away. I have been told that I have a mild case too - will it progress to something worst - no one knows. do I want to take the chance that it will....No! Do I want to take something that may delay its progrression - sure do!!
Will the modifying treatments assist in helping your MS in progessing to another level....pretty darn good indication that it will.
4 days after my dx, I was on Copaxone.
Have a great day
Hey Gary, I know what you mean. I am going to discuss this with my neuro doc at the next visiit more throughly. I don't know what else I can do. My LP and evoked potentials were normal. I have 5 lesions on my MRI of the brain ( 3 that are new since 2000) and aprts of my neuro exam were 'off'. No lesions on my spine anywhere. Maybe this is why he is not putting me on MS drugs? Maybe I have not fullfilled the full criteria for MS??? But he did tell us I have 'Mild MS'. He did up my dose of Amantadine to twice a day and has me in physcical therapy for balance. I won't see him again until late November of this year. Thanks for your support and concern though, I am just as concerned, believe me! Hugs~Katie
Hi Gretchen...Horses are great therapy! Did you know ( I used to instruct and train) you use the same muscles in your lower body to ride a horse as you do walking? Therefore you get the same workout. We had many students who had terrible balance issues as well as frequent bouts of spasms, and our riding program really helped them. Of course we always used side walkers.I am slowly getting back into riding again. I just need the more layed back horse these days rather than the 'full of spit' barrel horse, so I am looking to buy in the spring. Hugs Katie