So this must be, why I do my best thinking and finalizing program decisions, when I am sitting as opposed to standing.
I have been diagnosed with vestibular dysfunction because of my Ms and the reasoning for this study does make sense.
Thank you for posting this Lisa,... I will share thru my blog too...
Regards,
Stuart Schlossman
www.msviewsandnews.org
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Hi Lisa, Hope you are well and that you had a pleasant summer. I found your Post very informative and interesting. I definitely sway when I am standing still, and have some real balance issues. I am on a waiting list for Vestibular Therapy at a Rehabilitation Institute here in NY, and am hoping I get a place soon.
Over the past 18 months I have gradually become significantly tilted to the right, to the point where I have broken two chairs in my house from leaning too far to the right all the time. Even my scooter chair has lost all springs and suspension on the right side. I have gone to several doctors and physical therapists, had MRIs and X-Rays done and it shows that I have scoliosis and cervical spondyliosis but all the doctors and therapists agree this is not a result of scoliosis. I had a lumbar spinal fusion in 1994, so I don't know if that would contribute to it. Whatever it is driving me crazy with pain and the inconvenience of being so off center.
I am not asking you for a diagnosis or anything, I just thought I would add to your Post since this also affects my balance greatly and is postural in nature. I have an Intrathecal Pump for pain medicine and I have been taking additional breakthrough medication and muscle relaxers, but nothing seems to help. I have no idea if this is related to my MS balance issues but I will continue to search for an answer and will let you know when I find one.
In the meantime, I wish you and everyone reading your Posts, a very happy end of Summer and a healthy and productive Fall.
Denise - I do not understand the hold-up for you to get vestibular therapy.
I did this approx 5 months ago. It was no picnic to do and I had to give up after about 3 weeks as it made my vertigo even worse... The doctor Rx'd it and a week later my therapy began... - Regards, Stuart
That's very interesting, I have been on a waiting list for about a month already. This is at Rusk Institute located in the East 30s, and I guess they have a long waiting list. it's a rehab facility for all kinds of physical problems, not just MS, and the woman I spoke to on Thursday said she couldn't tell me when a spot would become available but if I am willing to come in on a last minute basis she would call me when they had a cancellation. I told her I was available and to please call me whenever someone cancelled.
You have me a little worried now, though. I really need to get my balance straightened out and get rid of this tilt, but I also have a lot of dizzyness as well, although I am not sure if it is vertigo. She said she will watch to get me in as soon as she can. It is getting very difficult for me to walk and quite frankly the pain in my hip and back is very bad. I have no idea if this is causing it but I do think the treatment cannot hurt. Right?
Talk to you soon.
Denise
Denise,
Two things I want to say to you, but first know that I am NOT a medical person. Something I was thinking of while reading your post - and remember I've had MS for 25+ years:
1. As I am sure you know, we all have MS differently and how one person reacts to any treatment - no matter what it is - can be different than the next person. Scott's story is just that - Scott's story. And although it is useful to hear about other's stories, and it also important to remember that you are unique onto yourself!
2. Is Rusk the only facility in NYC that gives this treatment? I know Rusk has an excellent reputation, yet I also know that Dr. Aaron Miller at Mt Sinai is highly reputable and someone I would trust for you to contact and discuss your needs. I hope I am not sounding naive. I do not have difficulties with balance (most of the time) so I am not familiar with a lot of this. If I sound ignorant to this issue please excuse me!!! Reading Lisa's posting was very educational and interesting.
I know about Rusk. My father was their for about 6 month sback in the early 90's when he came down with Guillane Barre.
If you live in Manhattan, there may be a neurologists office nearby or affiliated with yrou neurologist, where they have P/T in their facility. Try calling for this as the vestibular training does not require much space.
Regards,
Stuart
Thanks Stuart. I spent a month in Rusk back in 2001 when I broke my hip. I had a pin put in and unfortunately the whole month I was there I was in terrible pain, my leg was shorter so they put a lift on my sneaker, and all the doctor there said was that I could not tolerate pain. I told her I had been in pain for many years and I knew there was some thing wrong. Would they please take an x-ray. No, they didn't. The day I left I went right to the surgeon's office, she took an x-ray immediately, seeing how much pain I was in, and sure enough the pin that she placed in the hip was pushing against the fractured bone. She felt terrible and said she didn't know how I was tolerating the pain. She referred me to the joint replacement unit at the hospital and the next week I had a full hip replacement on that leg and did not go to therapy anywhere. I had a therapist come into my home. I don't think it is a problem with Rusk, it was an individual doctor's problem and I think we all have had doctors that don't believe us or understand pain. I haven't had trouble with that hip since.
The problem I am having now is in the left hip but as I said it only started Thursday. I have been going to Physical Therapy for about two months for the tilt, and this is the second place I've gone to, and both physical therapists, plus the rehab doctor I saw about two weeks ago for a consultation, said it wouldn't help the tilt. My neurologist that I see for pain said he thought it was coming from the brain, not the spine, and I just had a cervical MRI and thorasic x-ray which he looked at. I don't think the vestibular therapy is going to either, I was given a prescription to go there for the dizziness I have been feeling, which the ENT that gave it to me said might be from the MS. I am hoping though, that if I can get in there and they see the tilt they may have a suggestion on how I can treat it, or where I can go.
I am close to losing my mind here, Stuart. It is all so complicated, so many different symptoms from so many different places, and probably resulting from at least two different chronic conditions, my back and the MS. I always work on keeping a positive attitude and I do believe that I can work through this and keep on being productive. There are days, however, like today, in which I am pretty close to giving up. But I won't. There is always tomorrow!
Hi Cathy, I wrote you a response but somehow it got lost in the mail. Sorry. I just wanted to say that I do realize that every case is different and I don't base any decisions on what someone else is feeling or doing about their condition. My situation is extra complicated because I have several chronic conditions and I know that each one is affected by my total health picture. I do find it interesting however, to hear about how others are managing their illnesses and the symptoms they manifest.
Dr. Miller is my MS neurologist, however because my chronic pain situation is so long-term and I have an intrathecal pump, he has recommended that I remain with the neurologist who I have been seeing for about 16 years for my pain. Dr. Miller sees me for my MS, although I happen to believe that at times it is difficult to separate them. But I am not a medical person either. I did see a physical therapist at Dr. Miller's recommendation, however, and she did not think she could help my tilting. My pain neurologist said that he believes it is coming from the brain not the spine, which only tends to confuse the situation even more.
I will continue to press on and try to find a solution to some of the situations I am currently having. The pain I am feeling in my left hip and leg is getting quite unbearable so that will be my first priority. As an advocate for The American Pain Foundation part of my responsibility is to reach out to people in pain and help them understand some of the implications chronic pain can have on many aspects of our life, and that one of the problems in getting effective care is that many medical schools don't teach about pain as a condition, it is taught as a symptom of other conditions so too many doctors really cannot understand pain and how it affects the patient physically, socially, financially, spiritually, and with their relationships or communications with their medical professionals.
I am glad I know this as it is truly helpful. I am positive I will find a way to deal with the tilting and the pain, it just may take me longer than I like.
Thanks for your comments and concern,
Denise
Denise,
I am glad you are going to Dr. Miller and that you seem to have your doctor situation under control! I did not know you went to him so my suggestion seems silly now....Anyway, I will keep you in my thoughts and prayers as far as relieving your pain. Please continue to keep me posted. I'll be thinking of you.
Best,
Cathy
Thanks for your comments and best wishes, Cathy. I will keep you informed about my tilt, which is becoming a serious issue, but right now the more demanding issue is the severe pain in my left hip and leg. I wish I could walk with my crutches again. Do you see Dr. Miller? Are you in NY? IF so, maybe you would want to get involved in my volunteer work, why don't you think about it? If you are not in NY there is probably a State Leader in whatever state you are in and I can help put you in contact with him or her.
Take care, I hope you don't see much progression of your MS in the near future.
Denise,
I am in NJ. What involvement are you talking about? Pain Foundation? Please explain. P.S. I do not go to Dr. Miller. I used to work for IOMSN and I know of Dr. Miller's reputation. I wish he were closer to me as I am changing neurologists; I found one closer to me. You are blessed to have him as your doctor!
Hi,
I am a volunteer advocate for the American Pain Foundation's (APF) Action Network, which is a grassroots organization that has volunteers in every almost every state and we work on a very individual basis to educate medical professionals, the media, legislators, people in pain and the general public about the impact pain can have on all aspects of a person's life, including physical, social, professional, financial, and emotional. Chronic pain can range from the irritating to the most intractable pain imaginable. Many medical schools don't teach about pain as a condition, instead they teach it as a symptom of other conditions, and when that condition is treated or cured people expect the pain to go away, which doesn't always happen. You can look at my previous Postings for more information about some of the work I have done with the APF. or go to their website, painfoundation.org.
I am an Action Network Leader, which means I have committed to doing a certain amount of work, but there are always more to be done. There are many volunteer efforts underway and we need a lot of people to assist with them.
I hope this helps. I would be happy to introduce you to the NJ Leader if you would like.
Denise
Hi Denise, Lisa, Stuart,
My scoliosis was dx'ed long before my MS, but I'm sure the MS was already there in some form. Over the years the scoliosis has worsened dramatically and between that and the MS my balance, which was never good, is a joke. I feel totally deformed by my combined condition, bent over like a very old person. I feel (and look) like I have a hump pushing out of my rt side. When I have to stand for more than a few seconds, I sway, trip, and have fallen several times. I did some PT about 4 or 5 yrs ago for it. Mostly what I learned to avoid falling was to pay attention to what I'm doing and not think about other things.
The best place for me to be is in a swimming pool. I feel straight and totally healthy
. At least I can feel like that for an hour a day.
Feel good. Peace & Serenity,
Maris
I am sorry to hear that you are physically showing the problems you are having. I only started to "tilt" about a year ago and it has gotten so severe since then that I have a problem standing up "straight" even if I want to. And when I am finally standing straight, I, like you,have this big lump out my left side which is also known as a hip. I just lost almost 40 pounds and you can hardly notice with the way I am holding myself. AND, even more disturbing, is when I am straight like this, my right leg is hanging about 2 inches shorter than the left leg. Go figure! I am about to give up completely on this body, it's just too bad we can't order another one online. You can order just about everything else, why not a new body?
Thanks for sharing your story. i hope you don't live with too much pain. I find my work as an advocate really helps me. All the best, Denise
I am way behind in my email and just saw your response today. Sorry about that. My doctor says the scoliosis doesn't cause my body to tilt like this, it causes my shoulders to be uneven and can cause some tilt, but mine is pretty dramatic and I believe is what is causing me to have so much pain in my left hip (I tilt to the right). Like you, I can only stand for a minute or two before I am swaying or doing all kinds of things to keep myself from falling. I walk with two forearm crutches, which help a little, but I can use them when I am washing dishes or cooking. My balance is bad even with the crutches though, and I just started vestibular therapy for balance at a rehabilitation facility last week. I hope it is successful. Good luck to you, Stuart, and everyone else who is living with this disabling problem.