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Result of my visit to St. Louis MS Specialist
Well, Tuesday, Feb. 24th I had my visit with the Dr. in St. Louis. I've waited until today to update because I've been deeply depressed and just needed some time.
First, I am morbidly obese. I'm unable to exercise due to extreme pain, etc. and it's depressing to not be able to do normal, everyday things without pain. The first question she asked me was "Have you ever considered lapband surgery?" I immediately knew where she was going with that question. According to her my previous spells of vertigo, feeling like I'm going to fall out of a chair when I'm just sitting there, and having to walk with a cane is all because I'm fat. She told me to get rid of the cane and quit depending on it.
I admit it was a blow to my self esteem to be asked if I ever considered lapband. No one likes to have their self esteem attacked like that. Heck, I've considered lapband, gastric bypass, the UAMS weight loss program, diet pills and everything else that is out there. My insurance doesn't cover anything regarding weight loss. Even if it did, I still can't exercise. My main problem is that she blatantly disregarded my symptoms, abnormal blood tests, etc and blamed my weight for my issues.
Her words were "If you do have MS, it is a very benign form and you don't fit the classic criteria for MS". Hello, Dr., that's why I'm here! My Dr. says I have MS but; because I'm not fitting in the classic criteria he thinks it is a rare form of MS. Not to mention I also have some other complex health issues going on that could be related as a rare from of MS. It's awesome to have a benign form of MS as opposed to a more aggressive type and I'm glad that she doesn't think I have an aggressive form. I just didn't get the answers I so desperately need.
I'm trying to work on another option and will update when I find out if it will work or not. Meanwhile, I just wait.
I hope everyone's having a great day. I'm thinking of you all and hate for so many to go through the struggles and frustrations that I'm experiencing.
Take care.
First, I am morbidly obese. I'm unable to exercise due to extreme pain, etc. and it's depressing to not be able to do normal, everyday things without pain. The first question she asked me was "Have you ever considered lapband surgery?" I immediately knew where she was going with that question. According to her my previous spells of vertigo, feeling like I'm going to fall out of a chair when I'm just sitting there, and having to walk with a cane is all because I'm fat. She told me to get rid of the cane and quit depending on it.
I admit it was a blow to my self esteem to be asked if I ever considered lapband. No one likes to have their self esteem attacked like that. Heck, I've considered lapband, gastric bypass, the UAMS weight loss program, diet pills and everything else that is out there. My insurance doesn't cover anything regarding weight loss. Even if it did, I still can't exercise. My main problem is that she blatantly disregarded my symptoms, abnormal blood tests, etc and blamed my weight for my issues.
Her words were "If you do have MS, it is a very benign form and you don't fit the classic criteria for MS". Hello, Dr., that's why I'm here! My Dr. says I have MS but; because I'm not fitting in the classic criteria he thinks it is a rare form of MS. Not to mention I also have some other complex health issues going on that could be related as a rare from of MS. It's awesome to have a benign form of MS as opposed to a more aggressive type and I'm glad that she doesn't think I have an aggressive form. I just didn't get the answers I so desperately need.
I'm trying to work on another option and will update when I find out if it will work or not. Meanwhile, I just wait.
I hope everyone's having a great day. I'm thinking of you all and hate for so many to go through the struggles and frustrations that I'm experiencing.
Take care.
Yep, I think that's what it amounts to! Some of us by hook or crook have managed to get to this point in our lives with personality, ego and soul intact. Don't ever allow some neurologist to define you by one characteristic--be it weight, color,attitude,age,intellect,or anything else.
We are people who have a harder road in life, people who have meaning, people who are valuable as individuals. *We happen to have damaged mylein*. Everyone has some problem:this is one of ours. Most of us are dedicated to overcome that difficulty through hard work, prayer,medication and proper treatment over the years of our life. We owe it to ourselves and those we love to continually find the doctors who will aid us in advancing our cause of health.
I continually find resilence in people with MS. Maybe our determination to "get better" is higher because we hate the squirrely junk we have to put up with--or maybe it's because we just aren't quite "normal" and are always trying to "get there." I do feel most of us don't stop working toward that goal, and we must find doctors who will work with us. Anyone who doesn't does not deserve our partnership!
There's more too! Yes, the weight is an obstacle, but these kinds of symptoms just naturally lead to the need for the comfort that food provides many of us. Over the years the condition becomes more and more acute, particularly if we're given the genetic disposition and physical build. For me it's been 36 years living with MS, and 36 years of extra comfort from food without being able to exercise. But please listen>The last time I played tennis I then got in a heated pool and although I was a good swimmer, I felt like I almost drowned because of the heat of the pool and the weakness of my muscles from playing tennis! *I haven't done either since.* Do you blame me to avoid the feeling of being drowned? I've always said that just living is all the exercise I seem able to manage--and I meant every word of it! Three kids and a husband and just doing the business of having the good life (which I have had as an obese person with MS from age 24 to 60.) If you don't understand, Dr Neuro, there are others who might, and I will find one! Jane (in Indiana)
We are people who have a harder road in life, people who have meaning, people who are valuable as individuals. *We happen to have damaged mylein*. Everyone has some problem:this is one of ours. Most of us are dedicated to overcome that difficulty through hard work, prayer,medication and proper treatment over the years of our life. We owe it to ourselves and those we love to continually find the doctors who will aid us in advancing our cause of health.
I continually find resilence in people with MS. Maybe our determination to "get better" is higher because we hate the squirrely junk we have to put up with--or maybe it's because we just aren't quite "normal" and are always trying to "get there." I do feel most of us don't stop working toward that goal, and we must find doctors who will work with us. Anyone who doesn't does not deserve our partnership!
There's more too! Yes, the weight is an obstacle, but these kinds of symptoms just naturally lead to the need for the comfort that food provides many of us. Over the years the condition becomes more and more acute, particularly if we're given the genetic disposition and physical build. For me it's been 36 years living with MS, and 36 years of extra comfort from food without being able to exercise. But please listen>The last time I played tennis I then got in a heated pool and although I was a good swimmer, I felt like I almost drowned because of the heat of the pool and the weakness of my muscles from playing tennis! *I haven't done either since.* Do you blame me to avoid the feeling of being drowned? I've always said that just living is all the exercise I seem able to manage--and I meant every word of it! Three kids and a husband and just doing the business of having the good life (which I have had as an obese person with MS from age 24 to 60.) If you don't understand, Dr Neuro, there are others who might, and I will find one! Jane (in Indiana)
AS IF!! How dare anyone blame all of your problems on weight. If we were all 6ft and weighed 145, we would still have MS! I am also overwieght. I have managed to loose 25 lbs and keep it off for a year. I am none the healther for it!
It is so unfair that it is still PC to be prejuduced about weight. Just because some of us are heaver that the rest, we are still people, and we have real problems aside from the weight.
Shake the dust from your shoes and cane and find another dr!
Love from Mississippi,
Ann
It is so unfair that it is still PC to be prejuduced about weight. Just because some of us are heaver that the rest, we are still people, and we have real problems aside from the weight.
Shake the dust from your shoes and cane and find another dr!
Love from Mississippi,
Ann
I also am morbidly obese and have trouble walking and need a cane for my balance. You are not alone there, but you were treated abominably! What a sniggering, small-minded and mean-spirited disgust of a human being you saw there. I hope you can put her out of your thoughts. No one deserves anything near that kind of treatment.
We are here for you. We understand the difficulty in exercising. For me a large amount of my weight came after all the disability. This disease has systematically taken all that I care about about from me. At one point I decided that I was going to enjoy eating whatever I wanted. It was the only physical enjoyment I had left. That was my ice cream phase. I did enjoy it! But, it caused problems, too. So, here we are. My neuro makes little comments to me. He thinks I am lazy - has all but said it in those words. I can begin - only begin - to know your pain.
Please be well and put all that from your mind.
Quix
We are here for you. We understand the difficulty in exercising. For me a large amount of my weight came after all the disability. This disease has systematically taken all that I care about about from me. At one point I decided that I was going to enjoy eating whatever I wanted. It was the only physical enjoyment I had left. That was my ice cream phase. I did enjoy it! But, it caused problems, too. So, here we are. My neuro makes little comments to me. He thinks I am lazy - has all but said it in those words. I can begin - only begin - to know your pain.
Please be well and put all that from your mind.
Quix
Hi, Deb--I have had a MS diagnosis since 1973 because of the way my first symptoms "happened to fall" when I was in college. I have also gotten heavier and heavier since that time and have faced some predjudice like you over the past 36 years--even with a sound diagnosis. Mind you, no one knew anything about my weird symptoms, many told me they couldn't be happening, and I really had no one to tun to. bec ause I was pretty stable there was the thinking we "didn't want to rock the boat" and I chose to not go on any of the new injectibles when they came out--remember, I had already been through almost 20 years of my course. My throw of the dice.
I did pretty well until this past Thankgiving when I contracted a bad case of bronchitis which hasn't yet left me (it's April.) It's kicked up my MS and has affected my ability to walk--big time! Just what infection sometimes does to MS!!
So that said, I understand most everything you say. I'd just turn on my heel and say "You obviously are not the kind of neurologist I am interested in seeing." then I'd probably add, "Your narrow mindedness is archaic and sad." And search out another doctor. What makes it really sad is that you are still in Limboland, and I am sorry. I do have lots more thinking on this, Deborah, please write me so we can exchange emails--I do think I can offer you some perspective. Please let me try. jane in indiana
I did pretty well until this past Thankgiving when I contracted a bad case of bronchitis which hasn't yet left me (it's April.) It's kicked up my MS and has affected my ability to walk--big time! Just what infection sometimes does to MS!!
So that said, I understand most everything you say. I'd just turn on my heel and say "You obviously are not the kind of neurologist I am interested in seeing." then I'd probably add, "Your narrow mindedness is archaic and sad." And search out another doctor. What makes it really sad is that you are still in Limboland, and I am sorry. I do have lots more thinking on this, Deborah, please write me so we can exchange emails--I do think I can offer you some perspective. Please let me try. jane in indiana
I'm sorry you had that appt as well... I also was told I have a "Mild" demylinating disease? Mild...this thing has changed my life...so many things I can no longer do...and I'm sure you are in the same situation.. and they say 'MILD' ... I told the Dr...what do you mean Mild..sorry...this really frustrates me..
I hope you and I and everyone else in Limboland will find the answers we need and not hear the B**L...
take care hon
wobbly
undx
I hope you and I and everyone else in Limboland will find the answers we need and not hear the B**L...
take care hon
wobbly
undx
I'm sorry too for the treatment you got. That doctor is not for you, and really not for anyone who doesn't fit into a tight little definition. I hope you'll find another and better doctor who can help you get to the bottom of things. I don't know what your other health issues are or how they might affect a disease process such as MS, so that should be addressed by a good doctor as well.
From the little I've read, there are very few rare forms of MS, and those are indeed rare. If I were a doctor trying to help you, I wouldn't focus on them at all, but would try to find a single cause of what you are experiencing, which may or may not include MS. As to anyone saying that you have a mild form of the disease, I'm afraid I just can't go along with that kind of thinking, even though it brings comfort to you. We on the forum have seen too much that proves that no one can say for sure what MS will do, or when. 'Benign' and 'mild' are just words to describe what's happened thus far, not what could well occur in the future. ALL MS needs treatment, I believe, and I think the huge majority of members here would agree.
Good luck to you in finding better help. Please keep us posted.
ess
From the little I've read, there are very few rare forms of MS, and those are indeed rare. If I were a doctor trying to help you, I wouldn't focus on them at all, but would try to find a single cause of what you are experiencing, which may or may not include MS. As to anyone saying that you have a mild form of the disease, I'm afraid I just can't go along with that kind of thinking, even though it brings comfort to you. We on the forum have seen too much that proves that no one can say for sure what MS will do, or when. 'Benign' and 'mild' are just words to describe what's happened thus far, not what could well occur in the future. ALL MS needs treatment, I believe, and I think the huge majority of members here would agree.
Good luck to you in finding better help. Please keep us posted.
ess
I'm so confused. "Benign" MS? Is there really such a thing? I mean, I know you can go into remissions in RRMS, duh, but "benign." I've heard this several times now, on top of "mild" MS. Am I the only one that feels like MS IS MS?!?! BAH! Doctors! (No offense, Quix.) I'm sorry that you had such a terrible visit. I do hope that you can get help and some better answers, elsewhere.
Hi i've not posted to you before not sure if you new??
I'm so sorry for what you went through today, that was just awful and i felt like crying with you when i read it.
Why are these people so black and white as MS is not black and white in sx its the most not black and white in sx so why should people fit into a critia that they have based of other peoples findings!!!
I know whats it like to go from an active life thin and then too stop being active and then put on weight!! i put on 2 st mainly medication but not active as well i came off meds and had to nearly starve myself but i have lost the weight but i have to be so careful not to put it back on and its not cause i'm lazy as i used to jog 5 miles a day loved exercise its cause of the pain and muscle weakness that i cant exercise.
DRS, i hope you find somebody else go back to your DR as she supported you and get her to find another neuro for you.
take care
sam
I'm so sorry for what you went through today, that was just awful and i felt like crying with you when i read it.
Why are these people so black and white as MS is not black and white in sx its the most not black and white in sx so why should people fit into a critia that they have based of other peoples findings!!!
I know whats it like to go from an active life thin and then too stop being active and then put on weight!! i put on 2 st mainly medication but not active as well i came off meds and had to nearly starve myself but i have lost the weight but i have to be so careful not to put it back on and its not cause i'm lazy as i used to jog 5 miles a day loved exercise its cause of the pain and muscle weakness that i cant exercise.
DRS, i hope you find somebody else go back to your DR as she supported you and get her to find another neuro for you.
take care
sam
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