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Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 9/22/2008 1:25 PM (GMT -6)   
Hi All,
 
Just got back from my appt. My LP was normal, thankfully. The Neurolgist decided that he wants me to up my dosage of amantadine for now and have me take it twice a day. He told my husband and I that I have a mild case of MS and does not feel at this time he wants to use any of the meds that stop the progression. His reason is that he thinks I will not progress. He does want to see me again in 3 months and he wants to keep monitoring things. He said if I show more signs of progression before then to call him.
 
He also said becasue my evoked potentials were normal, was another reason he is not starting me on the meds yet, as he feels the side affects could be worse than what I am already having.
 
He said the  lesions on my MRI'S and his neuro exam are what he is basing my diagnosis on for having MS right now.
 
I guess I was hoping to be started on the meds to stop the progression, even though I hate the idea of needles. It is scary seeing people in his waiting room in wheelchairs and such and thinking I cold get that bad without treatment...but he seems to feel I wont and is going to stay on top of things.
 
My emotions are mixed right now. My hubby was very supportive. This is frustrating to me. While this all seems mild to my Doctor, it does not feel mild to me. Perhaps I am making to much of all this. Gotta let go and let God for now help me sort this all out. Hugs~Katie
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 9/22/2008 1:55 PM (GMT -6)   
I understand how you feel. I really do. You are right sometimes you just have to let go and rely on a higher power. Hugs,
Carolyn

colee1979
Veteran Member


Date Joined Jul 2003
Total Posts : 667
   Posted 9/22/2008 5:16 PM (GMT -6)   
Well,it's good your Dr doesnt "think" you will progress....question is,do you trust him? Have you seen any other Neurologist for advice/opinion? No matter what you decide,your right about God helping you sort it out. hugs!

 
~Nichole~
 
Dx with Ulcerative Colitis September 2002
Dx with Multiple Sclerosis August 2006
 
 
 


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 9/22/2008 6:48 PM (GMT -6)   

Hey Katie,

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.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 9/22/2008 8:02 PM (GMT -6)   
Hi, thanks all  for support. My Doctor just said he felt at this time I will remain a mild case of MS and he does not feel the need to put me on any MS meds now but wants to continue following me every 3 months, unless someting happens...then to call him. He assured me that he would have me on MS drugs now if he felt I needed to be on them. I guess I have to trust someone. He is  a specialist in MS at the Cleveland Clinic in Ohio and is supposed to be very good. He is very nice and my husband and I do like him. I guess it is just general fear for me after researching MS. Everyhting I read said to be on early treatment so as to not progress, when I told him this he said he feels I wont but if I begin to he will put me on the meds.
 
Gretchen, I will bring up the other drug you mentioned when I talk to him again. It was kinda a somber day for me becasue I thought for sure he would have started me on treatment other than Amantadine. He did give us a definite diagnosis of MS and my husband was there when he went over all of this, so he was more compassionate to what I am going through. Really I should feel blessed that I dont need the drugs right now, I am a bit depressed right now, since getting home, dont even know why. This is so not like me, but I feel down in the dumps. Hubby and I went to lunch after the appointment, but I was not great company...he was trying and that made me feel more guilty.
 
I think I need to just accept things are the way they are and get back to living as normal as I can and take care of myself. As the evening here progresses I am feeling less down. I have alot to be greatful for and I need to focus on that and put my attention on helping someone else. That and spend some time with the horses again, that usually clears my head from stinkin' thinkin. I sold my gelding a few months ago and I miss him alot. We have 2 here that belong to a friend, so I'll go play with them tomorrow. My balance was so bad I had to downsize, so now I have no horses of my own right now. I miss them. I am just kinda blue but I'll get over it.
 
Is it normal ( or just me) to feel this way after being diagnosed? Are there others who have been diagnosed as I have been and NOT been put on any meds? Just curious.
 
You all are great and thanks again for helping me out.~Katie
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 9/22/2008 8:37 PM (GMT -6)   
Katie,
 
Your feelings are way way way normal.  I am up one day and down the next and was diagnosed over two years ago.  Just because you are diagnosed does not mean that you now continue on with life.  This changes so much.  Just remember that life can still be sweet!!  It is definitely an up and down world, this world of MS.
 
I have a horse!!!!  He is such therapy for me.  Go do the horsey thing.  It will so help you.  I love that saying........the outside of a horse is good for the inside of man. 
 
Be gentle on yourself.  This is rough stuff.  Keep posting.
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted Yesterday 6:22 AM (GMT -6)   

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


What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted Yesterday 2:47 PM (GMT -6)   

Hi 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,

Sunny


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted Yesterday 3:22 PM (GMT -6)   
Thanks Sunny for taking time to reply to my post. I have read so much about MS and treatment that it seems to me , as well, that early treatment is best. I undertsnad not all docs feel the same. I am going to use the advise Gretchen gave me and ask about the copox???daily injections that have fewer side effects . I do like and trust my doctor. and I feel he will eventually put me on something. The Amantadine seems to be helping my balance a bit, not so much the fatigue though. Apparantly is is given to patients with parkensins disease, so I can see how it may be helping my balance, but not sure. Thank you again for your support. ~Katie

What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted Yesterday 4:27 PM (GMT -6)   
Hey Katie,

I have a 19 year old appaloosa. I got him as an unbroke 3 year old and started and finished him myself. I showed him in his youth..(mine too I suppose). We won lots of prizes (belt buckle, blankets, trophies, ribbons etc.) He showed in western pleasure classes, horsemanship, halter, and equitation. He is 15 hands 2 inches. His name is Nick. He is light gray with a white blanket on his bum and black spots on his back, barrel, and part way up his neck. He is a huge sweetie. He is trained western. He does trail like a thousand pound rabbit. He is real careful with me now that my balance has gotten worse. I have always sworn he would be a great therapeutic horse. He stops if he feels you getting off balance. He would not lope for my sons until he felt they were ready :)

Anyone can ride him including Sunny's boyfriend, Alex. Next time I am going to make Sunny ride him. I board him at a nearby stable. He is in a 48' by 60' paddock with his horsey buddies, TJ and Raven.
Gretchen       co-moderator MS board       diagnosed with MS July 2006


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 9/25/2008 6:51 AM (GMT -6)   

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


What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 9/25/2008 7:25 AM (GMT -6)   

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.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


Beau2006
Regular Member


Date Joined Apr 2006
Total Posts : 388
   Posted 9/25/2008 12:09 PM (GMT -6)   

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

Gary


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 9/26/2008 5:38 AM (GMT -6)   

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


What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 9/26/2008 7:11 AM (GMT -6)   
I love your quotes!!!  Especially that last one!!

Gretchen       co-moderator MS board       diagnosed with MS July 2006

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