NCLynn
08-24-2007, 08:21 AM
My neuro said he was 95% sure that I have MS because of all the symptoms I have. He suggested going for a second opinion, so I went to Duke on Wednesday. The MS specialist there (he introduced himself when he came in the room and then proceeded to tell me I was late and that he had other patients to see. He still spent time with me though), looked at my records, films and examined me and said my symptoms are not consistent with MS and it is absolutely not MS! I can tell you a couple of times during the pinprick test I wasn't sure if it was dull or sharp and during the heel-toe gait test, I thought I did lousy on it. I couldn't always put my feet one in front of the other touching and had to really concentrate on what I was doing. I even lost my balance once and had to put my one foot out to the side to catch myself.
The specialist said the two spots on my brain could be from the 5-10 years that I smoked. Anyone I have talked to has never heard of smoking causing this. He said basically that my symptoms could be from being "significantly" overweight, poor diet and lack of exercise. I am 5'7" and about 184 pounds. People honestly don't believe I weigh what I do when they look at me. I know I'm a little overweight, but he wants me to lose 40 pounds. I didn't gain this weight overnight. I have gained it over my 27-year marriage (was 110 when I got married), so it has definitely been a gradual thing, two children later and a total hysterectomy almost 15 years ago.
My husband has felt that I don't have MS and has been telling me the same thing that the doctor said, so of course hubby is convinced beyond the shadow of a doubt that it's not MS and if I change my diet, lose some weight and exercise I will feel better. The only thing that has changed in the last few days is what the doctor's diagnosis (if you can call it that) was. My symptoms haven't changed at all. I told the doctor I haven't been exercising because of the weakness in my legs, especially the right one, but he didn't seem concerned.
My husband told my almost 19-year-old daughter last night that I have accepted the fact that it's not MS, but I really haven't. I talked to my sister-in-law on the phone last night for over an hour (she has had 2 cousins and a friend with MS) and she agrees with me that it definitely sounds like MS. She lives in the Baltimore area and said to come up there for a few days so I could go to Hopkins for another opinion. I'm thinking I might just do that since I have had two totally different opinions.
I value each and every one on this board and would appreciate some of your thoughts on this. I have been going through this for about 3-1/2 years now. Oh, my husband asked the MS specialist if anxiety/stress could cause these symptoms and the doctor said it could. I can tell you I was totally fine until 3-1/2 years ago when these symptoms started, lasting a matter of months and then pretty much went away. I didn't give them another thought until they came back about 6 months ago.
I'm sorry this is so long, but I just have to get things off my chest.
Thank you to anyone who replies to this.
I hope each and everyone of you has a wonderful and blessed day and a terrific weekend! :)
Hugs,
Lynn
The specialist said the two spots on my brain could be from the 5-10 years that I smoked. Anyone I have talked to has never heard of smoking causing this. He said basically that my symptoms could be from being "significantly" overweight, poor diet and lack of exercise. I am 5'7" and about 184 pounds. People honestly don't believe I weigh what I do when they look at me. I know I'm a little overweight, but he wants me to lose 40 pounds. I didn't gain this weight overnight. I have gained it over my 27-year marriage (was 110 when I got married), so it has definitely been a gradual thing, two children later and a total hysterectomy almost 15 years ago.
My husband has felt that I don't have MS and has been telling me the same thing that the doctor said, so of course hubby is convinced beyond the shadow of a doubt that it's not MS and if I change my diet, lose some weight and exercise I will feel better. The only thing that has changed in the last few days is what the doctor's diagnosis (if you can call it that) was. My symptoms haven't changed at all. I told the doctor I haven't been exercising because of the weakness in my legs, especially the right one, but he didn't seem concerned.
My husband told my almost 19-year-old daughter last night that I have accepted the fact that it's not MS, but I really haven't. I talked to my sister-in-law on the phone last night for over an hour (she has had 2 cousins and a friend with MS) and she agrees with me that it definitely sounds like MS. She lives in the Baltimore area and said to come up there for a few days so I could go to Hopkins for another opinion. I'm thinking I might just do that since I have had two totally different opinions.
I value each and every one on this board and would appreciate some of your thoughts on this. I have been going through this for about 3-1/2 years now. Oh, my husband asked the MS specialist if anxiety/stress could cause these symptoms and the doctor said it could. I can tell you I was totally fine until 3-1/2 years ago when these symptoms started, lasting a matter of months and then pretty much went away. I didn't give them another thought until they came back about 6 months ago.
I'm sorry this is so long, but I just have to get things off my chest.
Thank you to anyone who replies to this.
I hope each and everyone of you has a wonderful and blessed day and a terrific weekend! :)
Hugs,
Lynn
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Jill1221
08-24-2007, 10:14 AM
Hello - you sound lost and frustrated, understandably so. I am sure that your husband was relieved to hear that it wasn't MS (mine was) but he doesn't live in your body and can't understand what you are going through. You need closure and this doctor has sent you away with no answers. I don't know if you remember my story...I too am in limbo land but there are some differences. My symptoms are not so bad right now as to interfere with my life, and this has only been going on 5 months for me. For me, I am okay waiting and repeating/revisiting in a few months. You have to do what is right for you. By reading your post, it sounds like you should get a "tie-breaker" opinion. You have been told 2 totally different things and you have crazy things going on with your body. I know all of the testing and appointments are hard but it sounds like you really need to see one (?) more doc. I will be thinking of you, good luck!
MSNik
08-24-2007, 10:28 AM
Hi Lynn. Ive been keeping up with all your posts since your doctors visit at Duke, and I have to tell you; I would trust the doctor. An MS specialist has seen it all, been around tremendous amounts of patients, information and research. IF he says NO, I wouldnt think he would be wrong. HOWEVER, didnt he also say something about re-checking you in 6 months? I thought I read that in one of your posts...
It is possible for them to be wrong, but highly unlikely that he is telling you no based on being wrong. He could be telling you no because you do not meet the criteria RIGHT NOW and in 6 months, something will show up on your MRI which could convince him otherwise..
Its also possible that you have convinced yourself of this, and nothing anyone tells you is going to be the right answer, until you hear what you want to hear...IM NOT SAYING THATS THE CASE, but from reading your posts, its possible that you are just in denial.
Just because the MS Specialist says you dont have MS doesnt make you crazy or say that nothing is wrong with you; its possible that you JUST DONT HAVE MS. Youve been reading this board long enough- you know that there are hundreds of other diseases which mimic MS. Its highly possible that you have another disorder, just not MS....and then again, you might have MS, but at this time, its not conclusive.
Lynn I feel for you, diagnositic limbo-land is the hardest place to be. NOT knowing is so much worse than having a disease. Im feeling for you. Youre a nice person, who is going thru *** trying to find out what is wrong with you. NO one is saying NOTHING is wrong with you....
Please listen to the doctor. Try to lose the weight he recommends, and go back and get another MRI in a few months. Diseases like this do not dissappear, meaning if there is going to be something to see, it will appear when it is ready to show itself. In the meantime, all you can do is TRY to relax and not fight with your family over this. Its only going to cause you stress which will make you feel worse.
Hugs honey....you really need to put this out of your head for a few months and try to mentally prepare yourself for a long diagnostic journey.
(and yes, smoking can cause white spots on the brain)
Nikki
It is possible for them to be wrong, but highly unlikely that he is telling you no based on being wrong. He could be telling you no because you do not meet the criteria RIGHT NOW and in 6 months, something will show up on your MRI which could convince him otherwise..
Its also possible that you have convinced yourself of this, and nothing anyone tells you is going to be the right answer, until you hear what you want to hear...IM NOT SAYING THATS THE CASE, but from reading your posts, its possible that you are just in denial.
Just because the MS Specialist says you dont have MS doesnt make you crazy or say that nothing is wrong with you; its possible that you JUST DONT HAVE MS. Youve been reading this board long enough- you know that there are hundreds of other diseases which mimic MS. Its highly possible that you have another disorder, just not MS....and then again, you might have MS, but at this time, its not conclusive.
Lynn I feel for you, diagnositic limbo-land is the hardest place to be. NOT knowing is so much worse than having a disease. Im feeling for you. Youre a nice person, who is going thru *** trying to find out what is wrong with you. NO one is saying NOTHING is wrong with you....
Please listen to the doctor. Try to lose the weight he recommends, and go back and get another MRI in a few months. Diseases like this do not dissappear, meaning if there is going to be something to see, it will appear when it is ready to show itself. In the meantime, all you can do is TRY to relax and not fight with your family over this. Its only going to cause you stress which will make you feel worse.
Hugs honey....you really need to put this out of your head for a few months and try to mentally prepare yourself for a long diagnostic journey.
(and yes, smoking can cause white spots on the brain)
Nikki
NCLynn
08-24-2007, 05:48 PM
I contacted my neurologist today and he does not agree with the specialist in that my symptoms are not consistent with MS. He still stands by his original 95% sure that it is MS. I mentioned about Johns Hopkins and he wants me to go to Hopkins for a third opinion, as I sent him a list of all my symptoms from 2004 and this year for him to see. I will be calling Hopkins on Monday to get an appointment scheduled and hopefully it won't be too long of a wait.
MSNik
08-24-2007, 06:29 PM
Lynn, I wish you well with Hopkins. You really are putting your all into finding out what is going on, and I admire that. Having a third opinion isnt a bad idea, and if it makes YOU feel better, then its a superb idea!
I hope you didnt think I was knocking you down when I told you that you might be on the road to a very long dx journey. Ive never heard of an MS doctor being wrong before...but there IS a first time for everything. I stand corrected, if in fact, he was wrong. My best guess what at the time of your tests, the tests WERENT conclusive enough for him to give you a definate DX...thats why I suggested you wait 6 months and have them repeated. But, if going to Hopkins doesnt take 6 months anyway, then youll have the answers sooner...good for you for FIGHTING for yourself.
Hugs
Nikki
I hope you didnt think I was knocking you down when I told you that you might be on the road to a very long dx journey. Ive never heard of an MS doctor being wrong before...but there IS a first time for everything. I stand corrected, if in fact, he was wrong. My best guess what at the time of your tests, the tests WERENT conclusive enough for him to give you a definate DX...thats why I suggested you wait 6 months and have them repeated. But, if going to Hopkins doesnt take 6 months anyway, then youll have the answers sooner...good for you for FIGHTING for yourself.
Hugs
Nikki
NCLynn
08-24-2007, 08:12 PM
Hi Nikki,
I understand where you were coming from earlier. I was born and raised in Baltimore and am familiar with Hopkins, so it feels right to go there. At this point I just need to contact another MS specialist since both the neurologist and first MS specialist I saw are on opposite sides with their diagnosis. As a matter of fact, the MS specialist didn't really give me a diagnosis, just a bunch of other things that could be causing some of my symptoms. I figure getting another MS specialist involved will tip the scales, because he has to at least lean one way or the other.
What the first MS specialist said about having another MRI of my brain in six months was that he really didn't see a need, but I could basically to appease myself.
Anyway, whether it is MS or not, I just want to find out what's wrong with me, because something is definitely wrong and it's not just diet, lack of exercise, weight or age.
Thanks again for being here for me to be able to gripe.
Hugs,
Lynn
I understand where you were coming from earlier. I was born and raised in Baltimore and am familiar with Hopkins, so it feels right to go there. At this point I just need to contact another MS specialist since both the neurologist and first MS specialist I saw are on opposite sides with their diagnosis. As a matter of fact, the MS specialist didn't really give me a diagnosis, just a bunch of other things that could be causing some of my symptoms. I figure getting another MS specialist involved will tip the scales, because he has to at least lean one way or the other.
What the first MS specialist said about having another MRI of my brain in six months was that he really didn't see a need, but I could basically to appease myself.
Anyway, whether it is MS or not, I just want to find out what's wrong with me, because something is definitely wrong and it's not just diet, lack of exercise, weight or age.
Thanks again for being here for me to be able to gripe.
Hugs,
Lynn
cindys601
08-24-2007, 09:02 PM
Hi Lynn~ My heart is going out to you!! I am going through what you are, knowing someting is wrong and wanting answers!! We definately know our own bodies and these "strange" sensations are overwhelming. I am waiting on my 1st neuro appointment in November and in reading your posts, am so scared thats what will happen to me too. I know what i could normally do in a day, now I just can't do it. I am overweight as you are, but have been that way for many years and still had lots of stamina and would go all day long without peatering out. Now I peater before I get started!! LOL. But knowing our own bodies is the best information we can own. If YOU feel somethings wrong and know it, don't give up!! I know I'm not. I'll continue until I find my answers. Good luck. My thoughts are with you!!~ Cindy
NCLynn
08-24-2007, 09:29 PM
Hi Cindy,
I am sorry that you are going through this too, but unfortunately there are many of us out there. I was telling my daughter a little while ago that I am determined to go to another MS specialist at Hopkins for a third opinion, so I can see what they say and which one of the other two he agrees with. Even if it's not MS, maybe they will be able to find out what is wrong with me.
This time around I've been dealing with these symptoms every day for the past 6 months. Now it is getting more difficult little by little to use my hands for fine movements, such as holding a pen or eating utensil. I've never had it like this before and I am absolutely determined to find out what's wrong with me. I'm a very stubborn person and don't give up easily!
Best of luck to you. Please let us know how you're doing.
Hugs,
Lynn
I am sorry that you are going through this too, but unfortunately there are many of us out there. I was telling my daughter a little while ago that I am determined to go to another MS specialist at Hopkins for a third opinion, so I can see what they say and which one of the other two he agrees with. Even if it's not MS, maybe they will be able to find out what is wrong with me.
This time around I've been dealing with these symptoms every day for the past 6 months. Now it is getting more difficult little by little to use my hands for fine movements, such as holding a pen or eating utensil. I've never had it like this before and I am absolutely determined to find out what's wrong with me. I'm a very stubborn person and don't give up easily!
Best of luck to you. Please let us know how you're doing.
Hugs,
Lynn