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What Season Is It? Duck Or Rabbit
I know I posted some jokes "poking a little fun" but boy did those jokes come back to me today when I was at my local neuros. Her exact words were, "Clinically, it looks likes MS, acts likes MS..Your exam is abnormal, and your symptoms and history plays out just like a textbook case of MS, BUT your MRIs are lacking and I can not diagnose you based off of those non specific lesions and I don't feel comfortable doing so." Looks like a ducks, quacks like a duck, but might be something else..Rabbit? But it's duck season!! Rabbits don't fly silly Mrs. Fudd.
She said that CC was stumped over my case, as well as her. Their idea of treatment was.."treat symptoms and wait for something to change." If I need another pain med..give me pain meds..whatever the symptom, throw pills at it, but to me that's BS because, why would you throw pills at a symptom without finding the cause??? And don't get me started on waiting for something to change..why wait? Wait for me to loose my right leg too!! I sat up and told her..okay I've played this waiting game for 3 years now..Where has it gotten me? I walk with a permanent limp, I pee the bed on occasions in the morning, my body is weak on the left side, I wake up in spastic pain 24-7, and you want me to wait..
I threw in the great Quix suggestions..I put her on the spot and asked her if my clinical picture of MS was strong enough to diagnose and doesn't that hold some weight since MS is clinically diagnosed. She said that my clinical picture was strong and pointed to MS, BUT I didn't have big enough lesions and according to her, a diagnosis could not be made unless those lesions were there. Then I asked if my type of lesions could occur in MS...She said they could, BUT they also could occur in migraines, and other problems, and she did not feel comfortable diagnosing based off of those lesions...(my lesions are 2-3mm bilateral). Translation..I have to wait until my brain or spine gives up something before I'll get some real meds and a diagnosis.
I threw of my sandals at one point and showed her the difference in my ankle and toe movement. I begged and pleaded but, she wasn't budging, so I gave up. She did a quick neuro exam and saw the difference in the left side. I asked what are we going to do now, and my husband popped off, and said that he was sick of this, and didn't want to wait for more evidence to show when I can barely walk as it is. She recommended going to another MS clinic..Hey, I guess she is trying. She is going to refer me to the one in Cincinnati.
I mentioned " a friend of the family that is a doctor that has MS". I told Quix's story of how her lesions weren't caught on a normal 1.5 T on her spine and how I've never been put on one because of my vena cava filter. I was told by CC that it wasn't FDA approved for the 3T when I had my spine series MRI and was put on their 1.5T. I was told by my vascular surgeon that it has no problems going on the 3T because it has no metal..It's made of titanium. He was suppose to check with the manufacturer, but never got back with me. I've read that there is several types of vena cava filters that can be placed on the 3T, but no higher. (I had the brand name of my filter but I can't remember now, so I don't know how CC would know if I could or couldn't be on one).
She is also recommending PT. She mentioned water therapy as an option to help. I will start that after seeing the MS clinic. So her I am, playing duck, ..is it a duck, it looks like a duck, quacks like a duck, maybe it's a rabbit, AH heck we don't know what we are hunting game again. Still slightly broken as always:) No miracles for me today!
I'm not sure what I'll do if this clinic can't give me answers. I can't afford to go to NYU. I would love to go. I think after this one, I would have exhausted practically every MS clinic in OH. I mentioned NIH for Rare Diseases, but that is even a long shot. They only take 50-100 patients a year. Oh Well! Didn't expect much anyways, so I really wasn't disappointed..but at least I gave it a good try, I'm just so very tired. I can except this as being the "new me" some days, but others days I'm screaming and fighting it, tooth and nail. I think it makes it worse when people look at me strange and ask what is wrong with my leg, or my arm, and I don't have a definite answer..and NEITHER does the doctors.
Still hanging in Limboland, but not liking it!!
She said that CC was stumped over my case, as well as her. Their idea of treatment was.."treat symptoms and wait for something to change." If I need another pain med..give me pain meds..whatever the symptom, throw pills at it, but to me that's BS because, why would you throw pills at a symptom without finding the cause??? And don't get me started on waiting for something to change..why wait? Wait for me to loose my right leg too!! I sat up and told her..okay I've played this waiting game for 3 years now..Where has it gotten me? I walk with a permanent limp, I pee the bed on occasions in the morning, my body is weak on the left side, I wake up in spastic pain 24-7, and you want me to wait..
I threw in the great Quix suggestions..I put her on the spot and asked her if my clinical picture of MS was strong enough to diagnose and doesn't that hold some weight since MS is clinically diagnosed. She said that my clinical picture was strong and pointed to MS, BUT I didn't have big enough lesions and according to her, a diagnosis could not be made unless those lesions were there. Then I asked if my type of lesions could occur in MS...She said they could, BUT they also could occur in migraines, and other problems, and she did not feel comfortable diagnosing based off of those lesions...(my lesions are 2-3mm bilateral). Translation..I have to wait until my brain or spine gives up something before I'll get some real meds and a diagnosis.
I threw of my sandals at one point and showed her the difference in my ankle and toe movement. I begged and pleaded but, she wasn't budging, so I gave up. She did a quick neuro exam and saw the difference in the left side. I asked what are we going to do now, and my husband popped off, and said that he was sick of this, and didn't want to wait for more evidence to show when I can barely walk as it is. She recommended going to another MS clinic..Hey, I guess she is trying. She is going to refer me to the one in Cincinnati.
I mentioned " a friend of the family that is a doctor that has MS". I told Quix's story of how her lesions weren't caught on a normal 1.5 T on her spine and how I've never been put on one because of my vena cava filter. I was told by CC that it wasn't FDA approved for the 3T when I had my spine series MRI and was put on their 1.5T. I was told by my vascular surgeon that it has no problems going on the 3T because it has no metal..It's made of titanium. He was suppose to check with the manufacturer, but never got back with me. I've read that there is several types of vena cava filters that can be placed on the 3T, but no higher. (I had the brand name of my filter but I can't remember now, so I don't know how CC would know if I could or couldn't be on one).
She is also recommending PT. She mentioned water therapy as an option to help. I will start that after seeing the MS clinic. So her I am, playing duck, ..is it a duck, it looks like a duck, quacks like a duck, maybe it's a rabbit, AH heck we don't know what we are hunting game again. Still slightly broken as always:) No miracles for me today!
I'm not sure what I'll do if this clinic can't give me answers. I can't afford to go to NYU. I would love to go. I think after this one, I would have exhausted practically every MS clinic in OH. I mentioned NIH for Rare Diseases, but that is even a long shot. They only take 50-100 patients a year. Oh Well! Didn't expect much anyways, so I really wasn't disappointed..but at least I gave it a good try, I'm just so very tired. I can except this as being the "new me" some days, but others days I'm screaming and fighting it, tooth and nail. I think it makes it worse when people look at me strange and ask what is wrong with my leg, or my arm, and I don't have a definite answer..and NEITHER does the doctors.
Still hanging in Limboland, but not liking it!!
Shell- I've been saying that for years now LOL...I've become a regular potty mouth. For each symptom I've added on, I'm cussing up a storm, and wondering when is it going to stop. I thought by now, someone would say, yep..you have _____. and then the mystery would be solved. I guess I was wrong.
In a way I understand their hesitation. They want to make sure that this is MS that they are dealing with, but it's funny to think that some doctors will diagnose, and can diagnose clinically with some evidence, while others want the typical presentation of MS on MRI before they diagnose and want it followed like a book. They should take a look at the National MS Society's web page that discusses the fact that a normal MRI doesn't exclude you from having MS, which I guess my MRI isn't exactly normal, but neuros discount my lesions because of them being non specific.
LuLu- Thanks, I didn't realize..She said wherever she is sending me, they were named the top doctors of the country.
On a side note, I went swimming for the first time in a couple of years. I was a great swimmer back in the day. We packed up the kids and went to my Mom's house. To make a long story short, I wanted to cry. I had no power in my legs or left arm compared to just a few years ago. It was so disheartening to say the least. I guess for some reason I thought that I would be normal in the water.
In a way I understand their hesitation. They want to make sure that this is MS that they are dealing with, but it's funny to think that some doctors will diagnose, and can diagnose clinically with some evidence, while others want the typical presentation of MS on MRI before they diagnose and want it followed like a book. They should take a look at the National MS Society's web page that discusses the fact that a normal MRI doesn't exclude you from having MS, which I guess my MRI isn't exactly normal, but neuros discount my lesions because of them being non specific.
LuLu- Thanks, I didn't realize..She said wherever she is sending me, they were named the top doctors of the country.
On a side note, I went swimming for the first time in a couple of years. I was a great swimmer back in the day. We packed up the kids and went to my Mom's house. To make a long story short, I wanted to cry. I had no power in my legs or left arm compared to just a few years ago. It was so disheartening to say the least. I guess for some reason I thought that I would be normal in the water.
"W"
"T"
"F"
I'm so sorry folks, but someone had to say it!
I'm sorry slightly-b, and I'm not liking it either, and by your side all the way.
-Shell
"T"
"F"
I'm so sorry folks, but someone had to say it!
I'm sorry slightly-b, and I'm not liking it either, and by your side all the way.
-Shell
Yep, just came from Cleveland Clinic ( CC ) back in Dec.. I saw a Dr. B twice. He was nice and all but I think he threw in the towel by the 2nd time I was referred out there by my opthamologist. My local neuro agreed with me going back both times. He wanted to do the same as as the year before..treat symptoms, watch and wait. He was stumped over my case, according to my local neuro.
I did get a little mad at him over this last visit. I complained about new symptoms I was experiencing and it seemed that he wasn't really listening. He said that although my exam was abnormal, it wasn't any worse compared to the year before, and he thought that my symptoms were improving since I didn't have seizures or migraines anymore. I had to remind him that I didn't have a migraine since 1998, and I was on an anti seizure/migraine medication, after a seizure like episode in 2007, so to me that isn't an improvement, but an indication that the meds are working.
I think I also got the old brush off, because he told me that he didn't understand why I kept making this long drive to see him and that my local neuro should be able to take care of my needs. I took that as he really didn't want to see me again.
I wasn't impress with him, but it sounds like you got a good one. Thanks for the suggestion anyways. I wonder if I could see other doctors, even if I've already seen another?
I did get a little mad at him over this last visit. I complained about new symptoms I was experiencing and it seemed that he wasn't really listening. He said that although my exam was abnormal, it wasn't any worse compared to the year before, and he thought that my symptoms were improving since I didn't have seizures or migraines anymore. I had to remind him that I didn't have a migraine since 1998, and I was on an anti seizure/migraine medication, after a seizure like episode in 2007, so to me that isn't an improvement, but an indication that the meds are working.
I think I also got the old brush off, because he told me that he didn't understand why I kept making this long drive to see him and that my local neuro should be able to take care of my needs. I took that as he really didn't want to see me again.
I wasn't impress with him, but it sounds like you got a good one. Thanks for the suggestion anyways. I wonder if I could see other doctors, even if I've already seen another?
I know it is quite a drive for you, but have you tried the Cleveland Clinic? When I lived at Indian Lake, that was where I went. I saw a Dr. Stone there at the MS Clinic. She was wonderful! While I didn't get my dx there, I can honestly say that she cares about who she sees.
I wish I could go see her now....but I moved to CA. lol
Addi
I wish I could go see her now....but I moved to CA. lol
Addi
Sarah- I'm still quacking..but I think I'm started to get that pruny look, because I've been in the water way too long.
Take Care
Take Care
Quix- As always, you crack me up. LOL You can always bring a smile to my face.
Mike- That was a good one too!
PD- I tried OSU's MS clinic but they wouldn't let me in the front door. I was referred out to their neuro center, where I got a student and a teacher. They chopped up my symptoms, history, and neuro exam to stress since my blood work was all normal and my MRI is what they considered normal with a few nonspecific lesions. My MRI was..No big deal they said. I know LuLu and a friend of my mother's goes there, to the actual MS clinic, and loves it. I look at it as this..there is bad apples in every bunch. Maybe we just got the bad ones, although I'm beginning to wonder if I'm an attractant for close minded /bad neuros or maybe it is true, and my case is complicated to them. I just wish they figure this out! Keep praying..I need a little help down here.
siv1- I'm not sure which clinic she's referring me to. I was the one that mentioned Cincinnati because my old opthamologist wanted me to go there, back in 2008 when I started to have eye muscle weakness, and it's the only one I have not been to, that's close. I'm not sure if anything has changed on my MRI, but I'm due for both brain and spine. I hope my body stops being stubborn and gives up some evidence or the doctors where I'm going, can "think outside the box" and look at me clinically.
LuLu- I agree that she is still listening to me, but I do wish she would act. Out of all my neuros, she has tried, at least. I've had more neuros that either gave up and threw their hands in the air, or just chopped it up to stress or nothing. What does UC stand for? Is it around here?
kbads- I'm so glad you got diagnosed, but it's so unfortunate that you had to loose so much before that diagnosis came in. That's pretty much what my family and I are afraid of. Pretty much my worse fear, in fact. My whole left leg became weak, back in 2008. Occasionally my ankle and toes would come back, but not anymore. I wonder if I ever will walk normally again. The doctors just don't seem to get the fact that I have a life and family to raise, and the whole entire time this is happening, I deal with these symptoms that no one can explain. They just want to throw pills at it.
To everyone- Thank you for your support right now. I really don't ask for it as much as I need to. I just don't know what to do right now and I really need to find a good doctor. I don't think I'm asking way too much, just something other than "watch and wait" and "pills for symptoms that creep up". I want to know the cause. I'm stuck it seems in limboland, and it was made clear to me yesterday that my body would have to give up more evidence before a diagnosis could be made. I'm scared of what that will mean to me ability wise. My neck is already starting to lock up and not bend to the left. My left leg is foreign to me. My bladder is acting up neurologically now (just to name a few new symptoms) SO if I wait for more damage to occur, what will I be like then, if I'm already like this?
And what about my spine and the 3T with the vena cava filter? Will this prevent me from going on a 3T? How could I find out if my vena cava filter is 3T approved by the FDA?
Mike- That was a good one too!
PD- I tried OSU's MS clinic but they wouldn't let me in the front door. I was referred out to their neuro center, where I got a student and a teacher. They chopped up my symptoms, history, and neuro exam to stress since my blood work was all normal and my MRI is what they considered normal with a few nonspecific lesions. My MRI was..No big deal they said. I know LuLu and a friend of my mother's goes there, to the actual MS clinic, and loves it. I look at it as this..there is bad apples in every bunch. Maybe we just got the bad ones, although I'm beginning to wonder if I'm an attractant for close minded /bad neuros or maybe it is true, and my case is complicated to them. I just wish they figure this out! Keep praying..I need a little help down here.
siv1- I'm not sure which clinic she's referring me to. I was the one that mentioned Cincinnati because my old opthamologist wanted me to go there, back in 2008 when I started to have eye muscle weakness, and it's the only one I have not been to, that's close. I'm not sure if anything has changed on my MRI, but I'm due for both brain and spine. I hope my body stops being stubborn and gives up some evidence or the doctors where I'm going, can "think outside the box" and look at me clinically.
LuLu- I agree that she is still listening to me, but I do wish she would act. Out of all my neuros, she has tried, at least. I've had more neuros that either gave up and threw their hands in the air, or just chopped it up to stress or nothing. What does UC stand for? Is it around here?
kbads- I'm so glad you got diagnosed, but it's so unfortunate that you had to loose so much before that diagnosis came in. That's pretty much what my family and I are afraid of. Pretty much my worse fear, in fact. My whole left leg became weak, back in 2008. Occasionally my ankle and toes would come back, but not anymore. I wonder if I ever will walk normally again. The doctors just don't seem to get the fact that I have a life and family to raise, and the whole entire time this is happening, I deal with these symptoms that no one can explain. They just want to throw pills at it.
To everyone- Thank you for your support right now. I really don't ask for it as much as I need to. I just don't know what to do right now and I really need to find a good doctor. I don't think I'm asking way too much, just something other than "watch and wait" and "pills for symptoms that creep up". I want to know the cause. I'm stuck it seems in limboland, and it was made clear to me yesterday that my body would have to give up more evidence before a diagnosis could be made. I'm scared of what that will mean to me ability wise. My neck is already starting to lock up and not bend to the left. My left leg is foreign to me. My bladder is acting up neurologically now (just to name a few new symptoms) SO if I wait for more damage to occur, what will I be like then, if I'm already like this?
And what about my spine and the 3T with the vena cava filter? Will this prevent me from going on a 3T? How could I find out if my vena cava filter is 3T approved by the FDA?
So sorry to hear that you are still floating (or should I say quacking?) in limboland. Geez you must be fed up and just keep at it..you will get there..
Love Sarah x
Love Sarah x
hello, my advice to you is to keep pushing for a diagnosis. My first skier with MS happened way back in 1998, and then I had a lot of accidents, was under major stress, experienced numbness and tingling in my fingers, and eventually wound up hitting a stop sign and telephone pole. I lost my job, and developed permanent numbness in my left hand, which basically makes me unemployable. I have tried to use assistive software technology, but first learned on a PC, and I am committed to using a Mac.
I too got the “if you have any other problems come back and see me” advice from my doctor back when I had a job. Since that time, I quit that job, opened a business, closed the business, got a job, then got fired from that job. The basic outcome is that I was without good medical insurance, which might have caused my MS to remain undiagnosed, and was a key factor in my eventual loss of dexterity in my hands. If I had been taking copaxone, which I currently take, I am 100% certain that my MS would not have progressed so far. Good luck in getting your diagnosis.
I too got the “if you have any other problems come back and see me” advice from my doctor back when I had a job. Since that time, I quit that job, opened a business, closed the business, got a job, then got fired from that job. The basic outcome is that I was without good medical insurance, which might have caused my MS to remain undiagnosed, and was a key factor in my eventual loss of dexterity in my hands. If I had been taking copaxone, which I currently take, I am 100% certain that my MS would not have progressed so far. Good luck in getting your diagnosis.
It stinks that you continue to struggle with this, a t least it sounds like she was listening even though she refused to act. PD -We've talked enough about our night and day differences in the experience in Columbus - I'm just sorry it was so bad for you two.
I was VERY impressed with Dr. Melanson at the UC MS Clinic when I heard her speak and had the chance to talk with her. AND I know a woman who sees her and has nothing but praise for her skills. I would see if you can get in with her.
I have told my neuro if I ever leave him I am going straight to UC and hiring Dr. Melanson.
Hang in there - of course, what choice do you have? I'm sorry this struggle continues for you.
hugs, Lulu
I was VERY impressed with Dr. Melanson at the UC MS Clinic when I heard her speak and had the chance to talk with her. AND I know a woman who sees her and has nothing but praise for her skills. I would see if you can get in with her.
I have told my neuro if I ever leave him I am going straight to UC and hiring Dr. Melanson.
Hang in there - of course, what choice do you have? I'm sorry this struggle continues for you.
hugs, Lulu
Hi,
I went through Riverhills MS clinic in Cincy, and the neuro(DR. Schmerler) specializes in MS. From limbo land to dx after one Brain MRI. Of course I had spinal MRI from earlier that had lesions. So it wasn't hard for him may be, still he knew at once he is looking at a MS case against all the odds.
You could try the same clinic.
I went through Riverhills MS clinic in Cincy, and the neuro(DR. Schmerler) specializes in MS. From limbo land to dx after one Brain MRI. Of course I had spinal MRI from earlier that had lesions. So it wasn't hard for him may be, still he knew at once he is looking at a MS case against all the odds.
You could try the same clinic.
Momma Doc Q1, I just ate several PURE BEEF FRANKS, so go ahead and say whatever you like about weenies.
Zheesh, sb, you have been through the mill. Since you said you will have been to alll of the clinics in our state, should I assume you've been through the one that has done so much for our dear Lulu? They sure didn't help me, but what do I know? She's had a very good experience overall, from what I gather.
Too much nonspecificity in my symptoms and tests, I suppose. Well, I'm about 97% well now, so I'll pray it stays this way but allows me to keep the gabapentin, at least until I see if I still need it.
We will continue to pray for your situation -- both of you.
Zheesh, sb, you have been through the mill. Since you said you will have been to alll of the clinics in our state, should I assume you've been through the one that has done so much for our dear Lulu? They sure didn't help me, but what do I know? She's had a very good experience overall, from what I gather.
Too much nonspecificity in my symptoms and tests, I suppose. Well, I'm about 97% well now, so I'll pray it stays this way but allows me to keep the gabapentin, at least until I see if I still need it.
We will continue to pray for your situation -- both of you.
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