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I went and saw my new primary care dr.
How is everyone doing out there? I had a really good experience yesterday. I went to my new primary care dr. She and I sat down and talked for about 30 min, then she examined me. She said that she was concerned so she asked for my neuro's name. She wants to get my file from him so that between them they can work together. Then she had me call him and make an appointment. I called yesterday and I am seeing him today at noon.
What is concerning her is my eye pain and the memory and some other problems.
I had a bad experience, when driving I completely forgot where I was going and where I was. I pulled off the road and cried, then the other day I could not remember how to use a dictionary. I ended up calling my mom who is 88 she had to teach me how to use the dictionary. Names for get that. You can tell me how to get some where or directions on how something works I will completely forget by the time I take a few steps away. Now my skin feels like I washed my skin in hot water and put it in the dryer and it shrunk 4 sizes, and my muscles feel like they are pulling off the bone.
I'm so happy that finally I have found a primary care dr that will work hand in hand with my neuro. My last primary care told me when I went to him what does you neuro want me to do. With a very bad attitude. I new then he would not work with the neuro which means I would have to go 75 miles one way every time I have a problem.
Quix If you are reading this I have a question for you. My father is 93 just had an MRI and the doctor said that if he was younger he would say the MRI was classic for MS. But he said it was oh I forgot what they called it. Man I hate this. It has something to do with his veins and that he has Altzhimers. My dad does not act like anyone with memory problems, now he does have walking problems and has since I can remember. I came along when he was 45. Could my dad have had MS all these years and it was not bad enough for the doctors to notice it? His heart dr checked all his arteries and they are very clear.
Well I need to go and get ready for that 1 1/2 hour drive.
Thanks for any input on my father, and allowing me to share my good experience.
Elizabeth
What is concerning her is my eye pain and the memory and some other problems.
I had a bad experience, when driving I completely forgot where I was going and where I was. I pulled off the road and cried, then the other day I could not remember how to use a dictionary. I ended up calling my mom who is 88 she had to teach me how to use the dictionary. Names for get that. You can tell me how to get some where or directions on how something works I will completely forget by the time I take a few steps away. Now my skin feels like I washed my skin in hot water and put it in the dryer and it shrunk 4 sizes, and my muscles feel like they are pulling off the bone.
I'm so happy that finally I have found a primary care dr that will work hand in hand with my neuro. My last primary care told me when I went to him what does you neuro want me to do. With a very bad attitude. I new then he would not work with the neuro which means I would have to go 75 miles one way every time I have a problem.
Quix If you are reading this I have a question for you. My father is 93 just had an MRI and the doctor said that if he was younger he would say the MRI was classic for MS. But he said it was oh I forgot what they called it. Man I hate this. It has something to do with his veins and that he has Altzhimers. My dad does not act like anyone with memory problems, now he does have walking problems and has since I can remember. I came along when he was 45. Could my dad have had MS all these years and it was not bad enough for the doctors to notice it? His heart dr checked all his arteries and they are very clear.
Well I need to go and get ready for that 1 1/2 hour drive.
Thanks for any input on my father, and allowing me to share my good experience.
Elizabeth
Am I to understand that this "neurologist" thinks he ruled out MS because two MRIs only 4 months apart showed no change?!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
OMG - there is no rule nor literature that demands that MS progress on a preset schedule! Rather the good literature is very clear that MS can appear to be dormant for years! My neuro (who I consider to be extraordinarily smart) looked at my prior MRI's and diagnosed MS. The one from 2/2005 was identical to the one from 2/2006 and identical to the one from 2/2007. Two full years apart! His reaction was relief that it had not progressed without treatment. I think your neuro is misunderstanding the very nature of MS, and that you need a new one. I am quite serious. 4 months!!! Sheeesh!!!!!!
We have had several people here on the forum who have had their diagnoses taken away because the MRIs were stable. Several of them went on to suffer significant diasability from this error. Heather has been quite vocal about this happening to her. But there have been others, too.
Yes, this guy is "Stuck in a box" but it's not even the right box!! And also, a negative LP is not a "break the deal" issue. NONE of the expert literature I have read interpreting the McDonald Criteria - Revised even suggests or implies that a negative LP rules out MS! It is more likely to be negative in the first several years of the disease than later. I am really thinking that Hopkins has some Losers (read that Dodo-docs) in it's MS Department.
He had better have some darn good explanations for your very MS-like symptoms.
Yes, yes, yes, you need another opinion.
AS to how lesions from one disease process can look like another. MS lesions can be very small and in the subcortical area. When they are smaller than 4mm, they can't be counted in the McDonald Criteria, but they can be considered in the overall picture. But, you say your dad's MRI looks like classic MS. This means the lesions are larger than 4mm and in the common MS areas, most of which are not common areas in microvascular ischemia
Most docs would not consider a diagnosis of MS in a person of his age. The reality is just as Essie said. Many people's MS is discovered at autopsy and maybe, looking back the family remembers symptoms that probably were MS. A good number of doc still consider MS after 50 to be rare. That view is very slowly changing as they are diagnosing the disease well into the 70's now. My most esteemed "evil neuro" told me I was too old at 52. This is poppycock.
Again, I think your current neuro is too rigid about rules he doesn't understand in the first place, and that's a bad situation. Seek thee new blood!
Quix
OMG - there is no rule nor literature that demands that MS progress on a preset schedule! Rather the good literature is very clear that MS can appear to be dormant for years! My neuro (who I consider to be extraordinarily smart) looked at my prior MRI's and diagnosed MS. The one from 2/2005 was identical to the one from 2/2006 and identical to the one from 2/2007. Two full years apart! His reaction was relief that it had not progressed without treatment. I think your neuro is misunderstanding the very nature of MS, and that you need a new one. I am quite serious. 4 months!!! Sheeesh!!!!!!
We have had several people here on the forum who have had their diagnoses taken away because the MRIs were stable. Several of them went on to suffer significant diasability from this error. Heather has been quite vocal about this happening to her. But there have been others, too.
Yes, this guy is "Stuck in a box" but it's not even the right box!! And also, a negative LP is not a "break the deal" issue. NONE of the expert literature I have read interpreting the McDonald Criteria - Revised even suggests or implies that a negative LP rules out MS! It is more likely to be negative in the first several years of the disease than later. I am really thinking that Hopkins has some Losers (read that Dodo-docs) in it's MS Department.
He had better have some darn good explanations for your very MS-like symptoms.
Yes, yes, yes, you need another opinion.
AS to how lesions from one disease process can look like another. MS lesions can be very small and in the subcortical area. When they are smaller than 4mm, they can't be counted in the McDonald Criteria, but they can be considered in the overall picture. But, you say your dad's MRI looks like classic MS. This means the lesions are larger than 4mm and in the common MS areas, most of which are not common areas in microvascular ischemia
Most docs would not consider a diagnosis of MS in a person of his age. The reality is just as Essie said. Many people's MS is discovered at autopsy and maybe, looking back the family remembers symptoms that probably were MS. A good number of doc still consider MS after 50 to be rare. That view is very slowly changing as they are diagnosing the disease well into the 70's now. My most esteemed "evil neuro" told me I was too old at 52. This is poppycock.
Again, I think your current neuro is too rigid about rules he doesn't understand in the first place, and that's a bad situation. Seek thee new blood!
Quix
Holy mackerel is right. He is Hopkins-trained. He goes by the book. I will talk to my new pcp on Monday to see if she knows a good neuro to get the 3rd opinion. Enough talk.
I have to call my mother. I just found my rent check to her on my desk. Boy do I feel bad.
My mom and dad did not want to sell the lake house. So my husband and I after they twisted our arms (yeah right) We moved in and pay them 375.00 rent. That tax's and ins. We are though looking for our own home. Just in case the house has to be sold to care for them when they get old. They are 93 and 88.
Do you have an suggestions to take care of pain? I can't take pain meds, I have reactions. Like hyper activity, or rash. I was given Neurotine but it messes with my mind.
Thanks you have been a good friend.
Elizabeth
I have to call my mother. I just found my rent check to her on my desk. Boy do I feel bad.
My mom and dad did not want to sell the lake house. So my husband and I after they twisted our arms (yeah right) We moved in and pay them 375.00 rent. That tax's and ins. We are though looking for our own home. Just in case the house has to be sold to care for them when they get old. They are 93 and 88.
Do you have an suggestions to take care of pain? I can't take pain meds, I have reactions. Like hyper activity, or rash. I was given Neurotine but it messes with my mind.
Thanks you have been a good friend.
Elizabeth
Holy mackerel, this is a coincidence. Do you mean you went to Johns Hopkins for evaluation, or that the doctor is Hopkins-trained? I've just been the Hopkins route for my own all-but-named diagnosis, and am about to start Copaxone.
A few weeks ago Quix did a really funny post about criteria for diagnosis, a spoof about how many appendages have to drop off before THAT syndrome is diagnosed. I don't have it marked but hope someone will bump it up. We need it!!
I don't know what labs were ordered for you, but doing them overnight is not unusual, all other things being equal. At least you have to wait only till Monday for more info. I hope you can forget about things over the weekend, but do let us know after Monday's appointment.
ess
A few weeks ago Quix did a really funny post about criteria for diagnosis, a spoof about how many appendages have to drop off before THAT syndrome is diagnosed. I don't have it marked but hope someone will bump it up. We need it!!
I don't know what labs were ordered for you, but doing them overnight is not unusual, all other things being equal. At least you have to wait only till Monday for more info. I hope you can forget about things over the weekend, but do let us know after Monday's appointment.
ess
Hi Ess
This dr is from John Hopkins. Which does not mean he is good but he is stuck in a box. You only have MS if you have a positive LP or another MS attack. My blood pressure is 116/72 total cholesterol 214. I have had my arteries check in my leg, heart, and neck 100% clear.
Now my new pcp had me do some labs and urine test yesterday.
She call today and said for me to get in she needs to talk to me. Of coarse I can't get in until Monday. That's ok. It's like what else could go wrong? What test only takes 24 hours to run?
I'm gonna enjoy my weekend. My hubby wants to buy me a new car. Maybe we will go look at some. Or dream about what we want.
Thanks Ess for your comments.
Oh yeah have you ever had vertical double vision in one eye?
Have a good weekend. If I don't get back, I'll post after my dr appointment on Monday.
Elizabeth
This dr is from John Hopkins. Which does not mean he is good but he is stuck in a box. You only have MS if you have a positive LP or another MS attack. My blood pressure is 116/72 total cholesterol 214. I have had my arteries check in my leg, heart, and neck 100% clear.
Now my new pcp had me do some labs and urine test yesterday.
She call today and said for me to get in she needs to talk to me. Of coarse I can't get in until Monday. That's ok. It's like what else could go wrong? What test only takes 24 hours to run?
I'm gonna enjoy my weekend. My hubby wants to buy me a new car. Maybe we will go look at some. Or dream about what we want.
Thanks Ess for your comments.
Oh yeah have you ever had vertical double vision in one eye?
Have a good weekend. If I don't get back, I'll post after my dr appointment on Monday.
Elizabeth
Well, you seem to be at a temporary standstill. I'm glad your doctor is thorough, at least. Of course, I can't see your MRIs, and if I could, certainly wouldn't be capable of saying anything intelligent about them. Still... And I've been in your boat about age-related MRI changes. A 47 year old woman should not have MRIs like one in her 70s, especially assuming your blood pressure and cholesterol are fine.
This doc might be stuck in some sort of box about MS diagnosis rules. You have 2 choices now, wait and see what happens, or find another MS-specialist doctor. I highly recommend the 2nd choice.
Hope others here comment.
ess
This doc might be stuck in some sort of box about MS diagnosis rules. You have 2 choices now, wait and see what happens, or find another MS-specialist doctor. I highly recommend the 2nd choice.
Hope others here comment.
ess
My neuro actually looked at the MRI's that were ordered by the Ortheo dr. and the ones that were done by the 2nd opinion neuro. He compared and looked for what seemed like hours but it was really only 10min. He said they look almost alike. And he did comment that if he takes the microvascular ischemia diagnoses it is very prominent for someone my age. He said it looks like some who would be in their 70's. But he said that he did not want to keep the diagnosis of MS since there was no change and my LP was negitive. Granted the MRI's were done only 4months apart and the LP was back within an hour. OK fine I said. Then why am I falling and why does my skin feel like it is 4 sizes to small when I move,and why do my muscles feel like they are ripping off my bones and why do I not have any feeling my left foot and why is my face numb, and I have trouble with using my hands? I had more question and he answered each one. He did say I have Ataxia and that it is getting worse with each week that goes by. We did agree to physical therapy and then after that a MRA. I hoping the physical therapy will last until it starts getting hot here. When it is over 85 I start have very active problems.
Oh yeah we had a great time last night. I was though in so much pain sitting there but I smiled and laughed. This dinner was for the 60 and older. My husband is 60 and I'm 47 and the one with a cane and not able to stand straight up because of how stiff my skin feels. My hubby and I signed up to go on a retreat. This is going to be fun. I may want to take the wheel chair but I'm going.
Talk to you all later
Love
Elizabeth
Oh yeah we had a great time last night. I was though in so much pain sitting there but I smiled and laughed. This dinner was for the 60 and older. My husband is 60 and I'm 47 and the one with a cane and not able to stand straight up because of how stiff my skin feels. My hubby and I signed up to go on a retreat. This is going to be fun. I may want to take the wheel chair but I'm going.
Talk to you all later
Love
Elizabeth
Hey Elizabeth. Did this neuro actually look at your MRIs himself? I mean carefully, on a screen or with a lightbox? This is important, as I've learned from my own experiences. If he's just taking the view of the radiologist then beware. A good neuro would look on his or her own. And is this one who specializes in MS? All important considerations.
ess
ess
Hi everyone!
Well I had a strange visit with the neuro. He took my MRI from the second opinion and said, and read the info from my primary care dr. Well there is no change on the MRI so I am taking my diagnosis of MS out since my LP was good. But you have ataxia and your balance is in trouble. He did a complete balance test again and he checked my reflexes. I have weak balance on my left side and reflexes on my left are very active. I have no balance on my right side and the reflexes are gone. So here we go again. He is sending me to a balance diagnostic and physical therapy. Good. After that he wants depending on what the physical theripist say's he will do MRI/MRA and if I am willing to do LP again. He is concerned about the loss of feeling in my left foot and my face and the fact I have trouble holding on the silver wear and picking stuff up. One thing good is he didn't shoe me out the door. We did have a good laugh and he did listen.
As for my dad,the doctor said his is micro vascular ischemic, but if he was younger he would say MS. Now my sister has MS she has had MS since she was 36 now she is 63. I'm on the roller coaster ride for my diagnosis now. Last week yes to MS this week NO to MS.
I'm a little up set and confused.
I'll be back later.
I've got to take a nap today. My hubby is taking me to a special at church. Elvis is coming! This should be fun.
Talk to you all later.
Elizabeth
Well I had a strange visit with the neuro. He took my MRI from the second opinion and said, and read the info from my primary care dr. Well there is no change on the MRI so I am taking my diagnosis of MS out since my LP was good. But you have ataxia and your balance is in trouble. He did a complete balance test again and he checked my reflexes. I have weak balance on my left side and reflexes on my left are very active. I have no balance on my right side and the reflexes are gone. So here we go again. He is sending me to a balance diagnostic and physical therapy. Good. After that he wants depending on what the physical theripist say's he will do MRI/MRA and if I am willing to do LP again. He is concerned about the loss of feeling in my left foot and my face and the fact I have trouble holding on the silver wear and picking stuff up. One thing good is he didn't shoe me out the door. We did have a good laugh and he did listen.
As for my dad,the doctor said his is micro vascular ischemic, but if he was younger he would say MS. Now my sister has MS she has had MS since she was 36 now she is 63. I'm on the roller coaster ride for my diagnosis now. Last week yes to MS this week NO to MS.
I'm a little up set and confused.
I'll be back later.
I've got to take a nap today. My hubby is taking me to a special at church. Elvis is coming! This should be fun.
Talk to you all later.
Elizabeth
Hi,
from what i've read, some people have MS with no or minimal symptoms even though there is damage and MS may only be discovered accidentally (or after death if they do autopsy)...
So it is possible that your Dad has MS, but a milder form.
Glad your primary seems like she will work with you.
Sally
from what i've read, some people have MS with no or minimal symptoms even though there is damage and MS may only be discovered accidentally (or after death if they do autopsy)...
So it is possible that your Dad has MS, but a milder form.
Glad your primary seems like she will work with you.
Sally
You're right. I don't know why vascular damage would look like nerve axon damage on MRI, but apparently it can. Quix is the best one to address this, so I hope she sees your post. I also can't say whether your dad's apparent clumsiness was anything more than that. It would be odd to have that effect with no other symptoms, though.
Meanwhile, we're sure interested in hearing about your own neuro experience. If you're wondering whether the possibility of your father's having MS makes your own chances greater, the answer is yes, but it still would be only a one in twenty chance.
ess
Meanwhile, we're sure interested in hearing about your own neuro experience. If you're wondering whether the possibility of your father's having MS makes your own chances greater, the answer is yes, but it still would be only a one in twenty chance.
ess
How great to have a daddy in his 90's that seems to be so well, despite his suscept "lesions." God bless him. He sounds like a wonderful man. What a lucky girl you are. My daddy was just like that.
Please let us know as soon as you can, about your appointment. We are anxious ot hear.
Heather
Please let us know as soon as you can, about your appointment. We are anxious ot hear.
Heather
Howdy! Yes we are one of the luck ones to have a good pcp. It took me a while to find this one.
My father got real sick, he was vomitting, fever, and a lot of fluid retention. And now we know the memory problems then was due to dehydration. The hospital wanted to make sure he did not have a stroke. They ran a battery of test. I live in Texas and they live in Florida. Yes the doctor did say microvascular ischemic disease that is what I was trying to remember. But the Cardio dr does not think that is the problem since all his arteries in his legs, neck and his heart are very clear. I have a question how can Microvascular ischemic disease show up looking like MS when it is vascular and MS is a nerve problem? Is it that hard to tell the difference? I'm just currious!!!
My dad is doing great but the balance problem, which he has had for ever. My Aunt told me they use to laugh at my dad. He could run into anything and everything would end up in his way. My dad would laugh along with them.
You all have a great day
I'll be back to let you know what the Neuro does.
I'm surprised I got in so quickly, maybe there was a cancelation just before I called.
Elizabeth
My father got real sick, he was vomitting, fever, and a lot of fluid retention. And now we know the memory problems then was due to dehydration. The hospital wanted to make sure he did not have a stroke. They ran a battery of test. I live in Texas and they live in Florida. Yes the doctor did say microvascular ischemic disease that is what I was trying to remember. But the Cardio dr does not think that is the problem since all his arteries in his legs, neck and his heart are very clear. I have a question how can Microvascular ischemic disease show up looking like MS when it is vascular and MS is a nerve problem? Is it that hard to tell the difference? I'm just currious!!!
My dad is doing great but the balance problem, which he has had for ever. My Aunt told me they use to laugh at my dad. He could run into anything and everything would end up in his way. My dad would laugh along with them.
You all have a great day
I'll be back to let you know what the Neuro does.
I'm surprised I got in so quickly, maybe there was a cancelation just before I called.
Elizabeth
Hi there. How nice that you now have a pcp that takes time with you and listens. Mine does too, but lots of people here have the opposite experience. We're lucky.
As to your dad, did his doctor mention microvascular ischemic disease? This can cause lesions on MRI that can be mistaken for MS (though sad to say it's usually the other way around). If he is basically happy and healthy at 93 be glad. Why did he have the MRI? If it were my dad and he was doing well I wouldn't bother him with any more tests, but of course that's an individual decision.
ess
As to your dad, did his doctor mention microvascular ischemic disease? This can cause lesions on MRI that can be mistaken for MS (though sad to say it's usually the other way around). If he is basically happy and healthy at 93 be glad. Why did he have the MRI? If it were my dad and he was doing well I wouldn't bother him with any more tests, but of course that's an individual decision.
ess
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