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Believe the radiologist or MS Specialist?
I just came home from seeing my first MS Specialist at a MS Center. My MRI report is blogged on my profile here, and I just want to make clear that it states that I have a lesion in active demylination as of last Friday. Well, the MS specialist disagrees and said he couldn't find it on the films. He also disagrees with the amount of lesions that the radiologist said I had, and that I only gained two lesions since my last MRI in 2008. I am so confused. The radiologist even discussed the findings with another radiologist and THAT was even documented on the MRI report.
The lesion that's compatible with active demyelination is in the subcortical medial left parietal lobe, and I looked up what it could effect in my body. That area of my brain happens to be the perception of stimuli related to touch, pressure, temperature and pain, which probably explains why my hands, legs and feet feel like they've been set on fire, I'm sensitive to touch, and when I put my hands in water, in no time, they feel HOT as H! I'm also experiencing numbness on and off in both hands and he thinks I have carpel tunnel in one of them due to tapping on my wrist, and I experienced subtle pins and needles when he did that.
I also have numb patches on my right leg and I could go on and on about these crazy symptoms, and the fact that I now walk with a cane due to bumping into walls and falling from being off balance, having VNA at my door every day now, THE PAIN, PAIN, PAIN, and HE THINKS IT'S MIGRAINE RELATED OR ANXIETY!! Oh, wait, I may, MAY have another "muscle disease", in addition to the migraines, he said. Uh, but everything else has been ruled out, and there's now 5 areas of my brain effected! Juxtacortical, subcortical, both frontal lobes, and periventricular. (caps on the ventricles and lesions on the left side of the lateral ventricle)
He orders a EEG sleep deprived study because the EEG I had when I was 14 was abnormal. How nice. He also ordered a EMG on right upper and lower extremities to check for carpel tunnel and whatever else in my legs. I'm sorry to have rambled on. I don't want MS but everything leads to MS and I'm tired of getting worse each and every day, and I want it slowed down! I'm scared! Opinions or thoughts about the radiologist vs the specialists?? Gosh, I'm so frustrated!
The lesion that's compatible with active demyelination is in the subcortical medial left parietal lobe, and I looked up what it could effect in my body. That area of my brain happens to be the perception of stimuli related to touch, pressure, temperature and pain, which probably explains why my hands, legs and feet feel like they've been set on fire, I'm sensitive to touch, and when I put my hands in water, in no time, they feel HOT as H! I'm also experiencing numbness on and off in both hands and he thinks I have carpel tunnel in one of them due to tapping on my wrist, and I experienced subtle pins and needles when he did that.
I also have numb patches on my right leg and I could go on and on about these crazy symptoms, and the fact that I now walk with a cane due to bumping into walls and falling from being off balance, having VNA at my door every day now, THE PAIN, PAIN, PAIN, and HE THINKS IT'S MIGRAINE RELATED OR ANXIETY!! Oh, wait, I may, MAY have another "muscle disease", in addition to the migraines, he said. Uh, but everything else has been ruled out, and there's now 5 areas of my brain effected! Juxtacortical, subcortical, both frontal lobes, and periventricular. (caps on the ventricles and lesions on the left side of the lateral ventricle)
He orders a EEG sleep deprived study because the EEG I had when I was 14 was abnormal. How nice. He also ordered a EMG on right upper and lower extremities to check for carpel tunnel and whatever else in my legs. I'm sorry to have rambled on. I don't want MS but everything leads to MS and I'm tired of getting worse each and every day, and I want it slowed down! I'm scared! Opinions or thoughts about the radiologist vs the specialists?? Gosh, I'm so frustrated!
Oh, Kristi! Don't ever worry about rambling on! I love to hear from other people that can related to me, no matter how long the response! :)
Back to the cane, I was smart enough not wait to be advised to get one, but when I was in the hospital recently, I was advised to go everywhere with it due to my falls. That bugged me a little bit, but I think I took it better than most, considering my age. It wasn't a bad price at $22.00 either.
And OMG did my jaw almost hit the floor when I read about your teeter-totter story, and it even brought tears to my eyes. I am SO sorry to hear that happened to you! :( I had to call VNA and tell the head honcho that I didn't like my physical therapist and to get me one that isn't such a snoot and judgmental.
She counted my stairs before coming into my apartment, looked around as if she was disgusted, ask personal questions about my family that was none of her business and did exercises with me, but didn't leave any paper or note about them so I could remember. Uh, hello? I have the worst short term memory! Some people, I tell ya!
To answer your other question, no, I've been on disability since 1999 and no longer work. I used to be a CNA for the elderly and absolutely loved it. I worked at nursing homes and also did private duty, and it was so very rewarding! It took a year for me to get social security and I was turned down the first time like most people, and I had many doctors stating that I couldn't work. It'll probably be the same for you, even though many things have changed in the system today, but either way, once you get your papers that you've been turned down, get yourself a free attorney who specializes in social security cases. You'll get it. :)
I wish you the best!
Back to the cane, I was smart enough not wait to be advised to get one, but when I was in the hospital recently, I was advised to go everywhere with it due to my falls. That bugged me a little bit, but I think I took it better than most, considering my age. It wasn't a bad price at $22.00 either.
And OMG did my jaw almost hit the floor when I read about your teeter-totter story, and it even brought tears to my eyes. I am SO sorry to hear that happened to you! :( I had to call VNA and tell the head honcho that I didn't like my physical therapist and to get me one that isn't such a snoot and judgmental.
She counted my stairs before coming into my apartment, looked around as if she was disgusted, ask personal questions about my family that was none of her business and did exercises with me, but didn't leave any paper or note about them so I could remember. Uh, hello? I have the worst short term memory! Some people, I tell ya!
To answer your other question, no, I've been on disability since 1999 and no longer work. I used to be a CNA for the elderly and absolutely loved it. I worked at nursing homes and also did private duty, and it was so very rewarding! It took a year for me to get social security and I was turned down the first time like most people, and I had many doctors stating that I couldn't work. It'll probably be the same for you, even though many things have changed in the system today, but either way, once you get your papers that you've been turned down, get yourself a free attorney who specializes in social security cases. You'll get it. :)
I wish you the best!
Oh I forgot to mention--- that first nuero that said my measley little lesion was "insignificant" also used his car key on my foot. I had totally forgot about that until you mentioned it.
I can completely empathize with the worry that the lesions are adding up and no one is seemingly doing anything about it. Thats exactly how I felt except at first, I was under the impression that I had a brain tumor. No one would go over the MRI with me!
Funny enough, I was actually happy to hear that it was MS..that feeling soon went away.
Well my thoughts and prayers are with you!
I can completely empathize with the worry that the lesions are adding up and no one is seemingly doing anything about it. Thats exactly how I felt except at first, I was under the impression that I had a brain tumor. No one would go over the MRI with me!
Funny enough, I was actually happy to hear that it was MS..that feeling soon went away.
Well my thoughts and prayers are with you!
Hi Nickie-
I too have had,, I guess, vanity about using a cane or walker. I just know that I don't attempt to go to the mall without someone to hold onto. it really is depressing. I think about many of the things that I used to do that I feel I can't do now.
Did you get a prescription for the cane from your Dr or Nuero? My nuerologist is in Seattle and I am in Tucson, so I won't be able to run in there. My PT is a bit disappointing too. The girls are all in their early 20's and even my therapist is under 30- not that I'm an "agist" or anything but they don't know anything about MS.
They work with mostly elderly people. I had to explain what this disease is. It makes me uneasy..I have already fallen and sprained my ankle there because she had me standing on a teeter-totter thing and when she told me to step off, she didn't balance me or hold onto me, so I totally fell and twisted my ankle.
I was completely humiliated and she didn't even apologize which I would have done if I were responsible for the safety and well-being of a patient.
I will look into getting a cane on Mon.
Do you work? I applied for disability recently but haven't gotten an answer yet..I'm sure I will be denied. Thats what I am told happens. I really wish I could work. I was in
beauty school when my dizziness started. I graduated but it was sooo hard. Concentrating on balancing and being under pressure to do things fast. I haven't been able to work since.
Wow..I really rambled...sorry! :-) Thanks for the advice! Hope to see you on here again soon.
Take Care!
(((HUGS)))
Kristi
I too have had,, I guess, vanity about using a cane or walker. I just know that I don't attempt to go to the mall without someone to hold onto. it really is depressing. I think about many of the things that I used to do that I feel I can't do now.
Did you get a prescription for the cane from your Dr or Nuero? My nuerologist is in Seattle and I am in Tucson, so I won't be able to run in there. My PT is a bit disappointing too. The girls are all in their early 20's and even my therapist is under 30- not that I'm an "agist" or anything but they don't know anything about MS.
They work with mostly elderly people. I had to explain what this disease is. It makes me uneasy..I have already fallen and sprained my ankle there because she had me standing on a teeter-totter thing and when she told me to step off, she didn't balance me or hold onto me, so I totally fell and twisted my ankle.
I was completely humiliated and she didn't even apologize which I would have done if I were responsible for the safety and well-being of a patient.
I will look into getting a cane on Mon.
Do you work? I applied for disability recently but haven't gotten an answer yet..I'm sure I will be denied. Thats what I am told happens. I really wish I could work. I was in
beauty school when my dizziness started. I graduated but it was sooo hard. Concentrating on balancing and being under pressure to do things fast. I haven't been able to work since.
Wow..I really rambled...sorry! :-) Thanks for the advice! Hope to see you on here again soon.
Take Care!
(((HUGS)))
Kristi
It makes me so sad to read this happened to you as well. Mistake after mistake after mistake! Oh, the stories I could tell, and I'm sure you could tell me plenty more, too. To know more lesions are attacking my brain at an every 3 month MRI, gosh, I just wanna scream obscenities! The anger, the depression, the back and forth crazy emotions only worsens my physical ailments.
About the cane, there are several reasons why I use it, but balance and swaying to the left are my two biggest issues, and YES, it is VERY helpful! I was in the hospital last week, and was taught how to use my cane the proper way while I was there. I didn't have a clue that I was doing it wrong.
Since my right leg is the weakest, I was told to use my left hand to hold the cane and I'm right handed. At first I thought it was gonna be very hard, but in a matter of 5 mins, I felt very comfortable, and couldn't believe how helpful it was! The physical therapist walked with me for about 15 mins, and said I swayed to the left several times and my right leg was up 1.5 inches or so front the floor, and I was using my left leg and cane to bring myself back down to 2 feet again. Oddest thing, I managed to do this but didn't even know it was happening at the time. I guess this is why I've taken many falls.
I really recommend getting one if you're having balance problems or falling a lot. I had to really humble myself to buy a cane, even though I fell backwards and slid down 5 concrete stairs on my back and hit every other step with the back of my head. It took several months of convincing, but because I went through a little PTSD due to what happened (afraid to go down any steps), I believe that helped make my decision.
Okay, I think I rambled enough. I wish you the best and I thank you for your kind words! (hugs)
About the cane, there are several reasons why I use it, but balance and swaying to the left are my two biggest issues, and YES, it is VERY helpful! I was in the hospital last week, and was taught how to use my cane the proper way while I was there. I didn't have a clue that I was doing it wrong.
Since my right leg is the weakest, I was told to use my left hand to hold the cane and I'm right handed. At first I thought it was gonna be very hard, but in a matter of 5 mins, I felt very comfortable, and couldn't believe how helpful it was! The physical therapist walked with me for about 15 mins, and said I swayed to the left several times and my right leg was up 1.5 inches or so front the floor, and I was using my left leg and cane to bring myself back down to 2 feet again. Oddest thing, I managed to do this but didn't even know it was happening at the time. I guess this is why I've taken many falls.
I really recommend getting one if you're having balance problems or falling a lot. I had to really humble myself to buy a cane, even though I fell backwards and slid down 5 concrete stairs on my back and hit every other step with the back of my head. It took several months of convincing, but because I went through a little PTSD due to what happened (afraid to go down any steps), I believe that helped make my decision.
Okay, I think I rambled enough. I wish you the best and I thank you for your kind words! (hugs)
I actually had the radiologist miss my lesions on two seperste MRI's. My nuerologist who was highly recommended by Mayo clinic and an apparent professor, said that the lesion was "insignificant" Even tho I couldn't walk..
It wasn't until I went out of state to an MS Specialty clinic that I was dx and at that time based on my films, he found not just 1 but 4 lesions which came as a total shock to me. 1 lesion is on the pons which is why I have such balance problems.
Do you find that a cane helps much with your balance problem? I tend to pull to the left but it goes either way. I would love to not have to hold my kids for balance or a cart..
I would still be undx if I hadn't taken matters into my own hands.
My advice to you-- don't settle! If this nuero isn't treating you well or the other medical people, then find someone else. Even if it means a waiting list.
Good Luck on getting a firm diagnosis!
Take Care!
It wasn't until I went out of state to an MS Specialty clinic that I was dx and at that time based on my films, he found not just 1 but 4 lesions which came as a total shock to me. 1 lesion is on the pons which is why I have such balance problems.
Do you find that a cane helps much with your balance problem? I tend to pull to the left but it goes either way. I would love to not have to hold my kids for balance or a cart..
I would still be undx if I hadn't taken matters into my own hands.
My advice to you-- don't settle! If this nuero isn't treating you well or the other medical people, then find someone else. Even if it means a waiting list.
Good Luck on getting a firm diagnosis!
Take Care!
Thanks so much for all your support and thoughts, guys! Maybe this doesn't come as a shocker, but this MS Specialist used his car key on my foot to test for the Babinski's sign. Yes, he's supposed to use a semi-sharp object, but I felt it was very unprofessional, and don't even believe he did the test correctly. He was very slow, and had to do it several times because my sock kept bunching up.
Jen, when I read what you had written, I really felt like a fool, but of course appreciate the information you have that I didn't at the time. I really need to come here more often to learn, as well as give my own advice as planned which was the reason I joined, and participate more in the community. I need friendship and that's something I haven't had since I was in school. I've pushed many people away due to being ill, and it's so hard starting over here (online or offline). Ugh! But I will try much harder because I know I will feel much better better mentally if I do!
Lulu, that's another thing I forgot to mention, and you're absolutely right...the MS Specialist said that he didn't care what the report had said, but did mention the ONE radiologists name and said,"I don't trust anything that man says!" so obviously he read it. Unbelievable! I commented by saying that he personally discussed the findings with another radiologist, and he basically said that it meant nothing to him. It would be absolutely awful if he personally knew the radiologist, or got "into it" with him at one point or another, and I have to suffer by waiting longer for treatment and/or answers, because it's some kind of competition with these guys. "You're wrong, I'm right, I'm better than you" kind of thing.
Either way, I'm gonna do both tests that he ordered because I'm very interested in the results, and yes, I have another appt with this specialist in 3 months. Of course if there's something wrong with the tests results, I'll be going in much sooner.
I have Medicare, so what I'll do first thing Monday morning is set up an appt at the University of Pennsylvania (Penn Medicine, The Multiple Sclerosis Center) which was recommended to me not too long ago, but it's a 5 month wait. I have a feeling it'll be worth it once I get there. Welp, let's hope so. I haven't had the greatest of luck which is quite obvious, but this "crazy" chickie hasn't given up yet! :)
Jen, when I read what you had written, I really felt like a fool, but of course appreciate the information you have that I didn't at the time. I really need to come here more often to learn, as well as give my own advice as planned which was the reason I joined, and participate more in the community. I need friendship and that's something I haven't had since I was in school. I've pushed many people away due to being ill, and it's so hard starting over here (online or offline). Ugh! But I will try much harder because I know I will feel much better better mentally if I do!
Lulu, that's another thing I forgot to mention, and you're absolutely right...the MS Specialist said that he didn't care what the report had said, but did mention the ONE radiologists name and said,"I don't trust anything that man says!" so obviously he read it. Unbelievable! I commented by saying that he personally discussed the findings with another radiologist, and he basically said that it meant nothing to him. It would be absolutely awful if he personally knew the radiologist, or got "into it" with him at one point or another, and I have to suffer by waiting longer for treatment and/or answers, because it's some kind of competition with these guys. "You're wrong, I'm right, I'm better than you" kind of thing.
Either way, I'm gonna do both tests that he ordered because I'm very interested in the results, and yes, I have another appt with this specialist in 3 months. Of course if there's something wrong with the tests results, I'll be going in much sooner.
I have Medicare, so what I'll do first thing Monday morning is set up an appt at the University of Pennsylvania (Penn Medicine, The Multiple Sclerosis Center) which was recommended to me not too long ago, but it's a 5 month wait. I have a feeling it'll be worth it once I get there. Welp, let's hope so. I haven't had the greatest of luck which is quite obvious, but this "crazy" chickie hasn't given up yet! :)
I'm surprised the neuro even looked at the radiologist's report- I think as a rule almost 100% of them don't even check what the others have to say.
In my thinking you are still awfully young to have this number of brain lesions. Will you have to humor this neuro and have the eeg performed to move forward or will your insurance allow you to seek a 2nd opinion? My first instinct would be to move on if you have a neuro telling you this is just migraines and is not willing to stay open to the possibilities.
When I first saw my neuro - who is an MS specialist -he told me all the reasons why I shouldn't have MS (age, lack of relapses, no serious symptoms) but then included that he was willing to look further and make sure of what he was saying. It was his desire to find answers that allowed him to do further tests that confirmed my definite MS. I would have no problem with this doctor telling you he thinks you have migraines, as long as he was prepared to test further to make sure that the evidence backed him up.
Do you have another appt. scheduled with this neuro?
I was so hopeful for you at today's appointment - I'm sorry this has not proceeded in smooth, straight line manner. Hang in there and don't give up.
be well,
Lulu
In my thinking you are still awfully young to have this number of brain lesions. Will you have to humor this neuro and have the eeg performed to move forward or will your insurance allow you to seek a 2nd opinion? My first instinct would be to move on if you have a neuro telling you this is just migraines and is not willing to stay open to the possibilities.
When I first saw my neuro - who is an MS specialist -he told me all the reasons why I shouldn't have MS (age, lack of relapses, no serious symptoms) but then included that he was willing to look further and make sure of what he was saying. It was his desire to find answers that allowed him to do further tests that confirmed my definite MS. I would have no problem with this doctor telling you he thinks you have migraines, as long as he was prepared to test further to make sure that the evidence backed him up.
Do you have another appt. scheduled with this neuro?
I was so hopeful for you at today's appointment - I'm sorry this has not proceeded in smooth, straight line manner. Hang in there and don't give up.
be well,
Lulu
I've been hearing a lot from people who have gone to MS specialists. Seems like all of them end up not being diagnosed, even with obvious neurological symptoms - for the most part, they're dismissed as having anxiety, or carpal tunnel, or migraines, or anything else that isn't MS.
Speaking personally, I went through about six months with the kinds of shooting pins and needles you describe in my wrist. I could rap on the wrist lightly with a finger, and electrical shocks would shoot up my arm. Eventually it went away, and I'm pretty sure it wasn't carpal tunnel.
I think the radiologist sounds like he knows what he's talking about. The neurologist, not so much.
Speaking personally, I went through about six months with the kinds of shooting pins and needles you describe in my wrist. I could rap on the wrist lightly with a finger, and electrical shocks would shoot up my arm. Eventually it went away, and I'm pretty sure it wasn't carpal tunnel.
I think the radiologist sounds like he knows what he's talking about. The neurologist, not so much.
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