Aa
My Ms appointment, Two Ms meds at the same time?
I have a question. I went to my MS doctor today and he noted I am starting to have balance problems.
I can not walk heel to toe any more and a few other things. He is changing my antidepressant to Prozac and sending me to physical therapy.
I am to go back in two months. If I had not improved then he is going to assume it is the MS and add another MS medication along with the Avonex.
He said he wants to make sure it is not stress causing me to have more trouble. The PT is to help me more with functioning at home.
I can not go up on my toes to reach things. The steps are becoming more of a problem for me.
I fell while coming down the steps over a week ago. I fell backwards so it was not an awful fall but it did hurt and left me bruised. I am 45 and not obese.
I assume someone my age and size should not be having these types of issues. Especially considering I used to be very physically active and strong.
He did the scratching the bottom of my foot test several times. My left toes bend down. My right toes flare out while my big toe stays generally unresponsive.
He double my Trileptal and added a medication for spasticity because of awful leg cramping in the morning.
Any ideas?
LA
I can not walk heel to toe any more and a few other things. He is changing my antidepressant to Prozac and sending me to physical therapy.
I am to go back in two months. If I had not improved then he is going to assume it is the MS and add another MS medication along with the Avonex.
He said he wants to make sure it is not stress causing me to have more trouble. The PT is to help me more with functioning at home.
I can not go up on my toes to reach things. The steps are becoming more of a problem for me.
I fell while coming down the steps over a week ago. I fell backwards so it was not an awful fall but it did hurt and left me bruised. I am 45 and not obese.
I assume someone my age and size should not be having these types of issues. Especially considering I used to be very physically active and strong.
He did the scratching the bottom of my foot test several times. My left toes bend down. My right toes flare out while my big toe stays generally unresponsive.
He double my Trileptal and added a medication for spasticity because of awful leg cramping in the morning.
Any ideas?
LA
I'm sorry you're feeling worse and hope that you will see improvement soon.
FWIW, I went to physical therapy because I thought maybe they could help me walk better. It never occurred to me that they could help with balance issues, but they probably had me spend half the time working on that.
I got the impression that how much they can help you depends on what is causing the problem. There are three parts that provide input to the balance system: somatosensory (the feeling on the bottom of your feet), the vestibular system (in the inner ear), and vision.
I had a test that Quix told me is called Computerized Posturography. This showed that my vestibular system was out to lunch (pretty much zero on a 1-100 scale, although apparently for my age range you only have to get to 55 to be normal). My somatosensory was also below normal (maybe 70 and I think they want you to have around 90--it's a little hard to tell on this graph) and my vision was in the normal range.
Anyway, I'm not sure they can do much about the somatosensory stuff (at least they didn't give me any exercises). They did give me exercises to try to rewire the vestibular input and this did seem to help. I went from zero to around 30. I still have problems and can't do the Romberg thing (although now I'm paranoid about falling), but I've definitely noticed that my footing is surer and I haven't fallen in over a month now (knock on wood).
So the PT might be worth a shot for balance problems.
sho
FWIW, I went to physical therapy because I thought maybe they could help me walk better. It never occurred to me that they could help with balance issues, but they probably had me spend half the time working on that.
I got the impression that how much they can help you depends on what is causing the problem. There are three parts that provide input to the balance system: somatosensory (the feeling on the bottom of your feet), the vestibular system (in the inner ear), and vision.
I had a test that Quix told me is called Computerized Posturography. This showed that my vestibular system was out to lunch (pretty much zero on a 1-100 scale, although apparently for my age range you only have to get to 55 to be normal). My somatosensory was also below normal (maybe 70 and I think they want you to have around 90--it's a little hard to tell on this graph) and my vision was in the normal range.
Anyway, I'm not sure they can do much about the somatosensory stuff (at least they didn't give me any exercises). They did give me exercises to try to rewire the vestibular input and this did seem to help. I went from zero to around 30. I still have problems and can't do the Romberg thing (although now I'm paranoid about falling), but I've definitely noticed that my footing is surer and I haven't fallen in over a month now (knock on wood).
So the PT might be worth a shot for balance problems.
sho
Anamaria and Elaine,
Thank you both much. You have been very helpful. IN my mind I am progressing but I understand why the doctor wants to try these two things before deciding to add or change my ms medication.
I am on Avonex and maybe it is not working. In the past couple of days I am really having problems with double vision. Lots of trouble with knees wanting to buckly.
This may be silly but I practive the heel to toe walk and running my heel up and down my leg. Can't do either.
It scares me because I was at least able to run my heel up and down my leg with my left leg just 3 months ago. Not any more.
At that time I was also able to do a few heel to toe steps. Not any more. I was not able to do the Romberg last time but have been able to in the past.
I also noticed when I was doing the test with my hands held out in front of my my right hand drifts.
I know this means progression or at the very least another flare.
The medication he put me on for leg cramping is working great. My Trileptal was doubled and my face pain is so much better. I got through yesterday without having to take any advil. Before I was taking as much as allowed and probably more than I should have.
I feel very drugged right now but hopefully that will pass. I also went from Lexapro to Prozac. I read Prozac helps slow down the progression of MS for a few months anyway.
Hmmm, I have children, a grandchild, a life to live. I am not liking this MS thing very much. :(
Thank you for your support. I am worried right now.
LA
Thank you both much. You have been very helpful. IN my mind I am progressing but I understand why the doctor wants to try these two things before deciding to add or change my ms medication.
I am on Avonex and maybe it is not working. In the past couple of days I am really having problems with double vision. Lots of trouble with knees wanting to buckly.
This may be silly but I practive the heel to toe walk and running my heel up and down my leg. Can't do either.
It scares me because I was at least able to run my heel up and down my leg with my left leg just 3 months ago. Not any more.
At that time I was also able to do a few heel to toe steps. Not any more. I was not able to do the Romberg last time but have been able to in the past.
I also noticed when I was doing the test with my hands held out in front of my my right hand drifts.
I know this means progression or at the very least another flare.
The medication he put me on for leg cramping is working great. My Trileptal was doubled and my face pain is so much better. I got through yesterday without having to take any advil. Before I was taking as much as allowed and probably more than I should have.
I feel very drugged right now but hopefully that will pass. I also went from Lexapro to Prozac. I read Prozac helps slow down the progression of MS for a few months anyway.
Hmmm, I have children, a grandchild, a life to live. I am not liking this MS thing very much. :(
Thank you for your support. I am worried right now.
LA
I wanted to share my tidbit on balance. I recently posted on this a while back, so will try to keep it short.
In Februay my PCP tells me she thinks I have MS. Besides many other symptoms my balance was terrible. I was falling, bumping into things, etc. My first visit with a Neuro in March I couldn't do the Romberg test. I would fall immediately. Was very clumsy with the heal to toe test.
In June, I still couldn't do the Romberg test and take only 3 to 4 clumsy steps with heal to toe test before falling.
On Sep 5th, I still couldn't do the Romberg test and now was falling immediately with the tandem heal to toe test. Neuro was concerned. I had fallen backwards and bruised my self quite a bit. He told me to put handrails in my shower and sent me to PT to fit me with a cane and for exercise to help with balance.
So on Sep. 21st I wake up and I was able to do both test without falling. I was not 100% but quite close. At this point I had been on Copaxone for 3 months. I'd like to think it's taking affect. Tommorrow I visit with my Neuro. I'll get his opinion. This last week I haven't been doing as well and not as good with the test like I was that day but definately ahead of the game to where I had been.
I don't think PT, at this point has anything to do with my improvement. I'm not saying it won't help but, I had barely did a couple of things that they suggested. So I still plan to go if my neuro thinks I should.
One of the focuses PT was doing with me was to try and work on strength in my legs since thats one of our defenses to keep from falling. I have weakness in my left leg and some spaticity in both and my left knee wants to buckle all the time. They actually told me they would try to help but were not sure since I was like you strong and active up until about April. I have been going to the gym 3 to 4 times a week . I ws doing strength training and aerobic exercise. I was moving up in my weights to squat 25 pounds and hand weights I was moving into 10lbs per arm. Slowly I started loosing strength. By end of May I was squatting 15 pounds and lifting only 3 to 5lb hand weights. :(
Sorry for my long post. I lied about keeping it short didn't I? I just wanted to share my experience to give you an idea of what you might expect in PT. Best wishes sent your way.
Anamaria
In Februay my PCP tells me she thinks I have MS. Besides many other symptoms my balance was terrible. I was falling, bumping into things, etc. My first visit with a Neuro in March I couldn't do the Romberg test. I would fall immediately. Was very clumsy with the heal to toe test.
In June, I still couldn't do the Romberg test and take only 3 to 4 clumsy steps with heal to toe test before falling.
On Sep 5th, I still couldn't do the Romberg test and now was falling immediately with the tandem heal to toe test. Neuro was concerned. I had fallen backwards and bruised my self quite a bit. He told me to put handrails in my shower and sent me to PT to fit me with a cane and for exercise to help with balance.
So on Sep. 21st I wake up and I was able to do both test without falling. I was not 100% but quite close. At this point I had been on Copaxone for 3 months. I'd like to think it's taking affect. Tommorrow I visit with my Neuro. I'll get his opinion. This last week I haven't been doing as well and not as good with the test like I was that day but definately ahead of the game to where I had been.
I don't think PT, at this point has anything to do with my improvement. I'm not saying it won't help but, I had barely did a couple of things that they suggested. So I still plan to go if my neuro thinks I should.
One of the focuses PT was doing with me was to try and work on strength in my legs since thats one of our defenses to keep from falling. I have weakness in my left leg and some spaticity in both and my left knee wants to buckle all the time. They actually told me they would try to help but were not sure since I was like you strong and active up until about April. I have been going to the gym 3 to 4 times a week . I ws doing strength training and aerobic exercise. I was moving up in my weights to squat 25 pounds and hand weights I was moving into 10lbs per arm. Slowly I started loosing strength. By end of May I was squatting 15 pounds and lifting only 3 to 5lb hand weights. :(
Sorry for my long post. I lied about keeping it short didn't I? I just wanted to share my experience to give you an idea of what you might expect in PT. Best wishes sent your way.
Anamaria
I know that Craig has alot more balance problems now than he did eight months ago. He also has a positive Rombergs and cannot be standing when he closes his eyes.
In Craig's case, NYU thought the balance worsening etc was progression of MS. Although they saw him for the first time in August, we told them about the deterioration and they went right to MS progression as their reason.
He also can't walk heel to toe on a straight line. NYU is studying that in relation to MS progression, and follows their patients' ability to walk heel to toe.
NYU also lists a drug trial of Avonex plus another drug, but I can't remember which one. They list it on their website.
I hope the PT helps.
Elaine
In Craig's case, NYU thought the balance worsening etc was progression of MS. Although they saw him for the first time in August, we told them about the deterioration and they went right to MS progression as their reason.
He also can't walk heel to toe on a straight line. NYU is studying that in relation to MS progression, and follows their patients' ability to walk heel to toe.
NYU also lists a drug trial of Avonex plus another drug, but I can't remember which one. They list it on their website.
I hope the PT helps.
Elaine
Sho- He didn't tell me what medication and I was afraid to ask! I couldn't believe what I was hearing actually. :(
LuLu, Where are you at? There is another lady on here who is from Indiana. I have not met her in person but would like to. I have not posted here a lot recently. School has started and I am staying a little busy with the kids. Hopefully now that they are all settled in to school life will be a little less busy.
Shell,My last neuro appointment was in July and my exam looked pretty good. About the middle of August I started to notice some more issue with my balance and have been very tired. I can not stay awake with out Provigil. The doctor told me that stress can cause MS symptoms to become worse. I have been busy getting kids into school but there are not any extra stresses in my life right now.
I decided to give the prozac and therapy a try because the doctor wants to see if those things will help before adding any more bit time meds. Which I appreciate even though I feel frustrated right now. He did not mention what medication he would add.
I got a flu shot today. I get to skip my avonex injection for this week!:)
LA
LuLu, Where are you at? There is another lady on here who is from Indiana. I have not met her in person but would like to. I have not posted here a lot recently. School has started and I am staying a little busy with the kids. Hopefully now that they are all settled in to school life will be a little less busy.
Shell,My last neuro appointment was in July and my exam looked pretty good. About the middle of August I started to notice some more issue with my balance and have been very tired. I can not stay awake with out Provigil. The doctor told me that stress can cause MS symptoms to become worse. I have been busy getting kids into school but there are not any extra stresses in my life right now.
I decided to give the prozac and therapy a try because the doctor wants to see if those things will help before adding any more bit time meds. Which I appreciate even though I feel frustrated right now. He did not mention what medication he would add.
I got a flu shot today. I get to skip my avonex injection for this week!:)
LA
Hey LA!
Hmmm, you think it will be Copax? I'm wonder. How long you been on the Avonex? It's not been very long has it?
I'm glad the Dr. is picking up on it and sending you to PT. I hope the prozac works too, I remember you were pretty low.
I didn't realize it had gotten this much worse for you. How long has your balance been this bad?
ttys,
Shell
Hmmm, you think it will be Copax? I'm wonder. How long you been on the Avonex? It's not been very long has it?
I'm glad the Dr. is picking up on it and sending you to PT. I hope the prozac works too, I remember you were pretty low.
I didn't realize it had gotten this much worse for you. How long has your balance been this bad?
ttys,
Shell
Hi - I don't think we've crossed paths yet since I am so new here. I looked and see you are a neighbor over in IN! I too would be curious to hear what the neuro would want to add to the avonex.
Like you, I have stairs in my house and I hang on for dear life, especially when going down. Don't take any chances, ok?
My best,
Lulu
Like you, I have stairs in my house and I hang on for dear life, especially when going down. Don't take any chances, ok?
My best,
Lulu
No ideas, unfortunately, but I'm sorry to hear you're having balance problems. They suck. Be careful on those stairs and don't be stupid like I have been sometimes and try to do stairs with something in both hands (well, these days I hang on for dear life :-) ).
Did the neuro say what med he would add if you don't improve in two months?
sho
Did the neuro say what med he would add if you don't improve in two months?
sho
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