Aa
I hit the jackpot today!
But not in terms of money. It was my checkup neuro appointment at Hopkins.
I was scheduled to see the nurse practitioner, which was fine with me, since she's in the neurology clinic every day, whereas my regular neuro sees patients only one day a week (a standard practice there, where research is king). So getting a prompt appointment with him is pretty much impossible.
The nurse, it turned out, has been at Hopkins only since January, apparently lured away from another MS clinic by a doctor who had worked there with her. However, she has been an MS nurse since 1988, she told me. She was so nice! And so knowledgeable!
She apologized profusely for having me wait an hour past the scheduled time, but I knew what was happening because the reception clerk checked 3 times for me, and was super-kind and helpful. That's a rarity at Hopkins, which is huge and impersonal for the most part. Anyway, the nurse talked to me and asked loads of questions, took careful notes, and did a thorough neuro exam.
I told her I'd been having trouble with my right leg, specifically in lifting it from certain positions. I said I was concerned because it seemed to be slowly getting worse. When she did her testing on that, I asked what rating she was giving my hip flexor strength. She said 3 out of 5, which is significantly worse than last time. Then she asked if I'd been having trouble with my right arm. At first I said no, then mentioned that it sometimes bothers me when driving, sort of an achey feeling. It had never crossed my mind that that was related to MS. My car is only a few months old, and I thought that somehow the steering wheel was 'different.' However, she was clear that she thinks it is weakness. So she ordered not only a new brain MRI, but also cervical spine, thinking the right side weakness might orginate there.
I also told her that other long-standing symptoms had greatly lessened in recent months, but that I continued to suffer from fatigue, plus the relatively new heat regulation problem, sweating when others are quite comfortable, etc. I added that urine retention symptoms were much better but that I suffered from occasional extreme urge incontinence.
I had brought with me the films from my very first brain MRI, in March 2000. I had taken all the other zillion MRI stuff to other Hopkins appointments, but the earliest I had had was from 2003. I had wanted my neuro to take a look at the earliest one, because there was a lot less to see, but still abnormalities in the ventricular area. Well, just before I was seen by the nurse, my neuro left to go to a meeting. The nurse said he would return, and asked if I would wait. But instead of sending me back into the waiting area, she kept me in her examination room, repeated a few tests, and discussed lots of things in detail. So I was with her nearly 2 hours!
She had one of the fellows look at the 2000 one, and compare it with the 2009 MRI. She seems awfully good at this herself, and showed me lots of stuff I didn't know how to interpret. Still, we waited till Dr. X came back. Luckily, the patient after me was a no-show, so she had ample time. Finally Dr. X returned and she and he conferred.
Then he came in to see me. I am not clear on what he meant, but he said that he had looked at the MRIs, and that he found brain atrophy. I'm assuming this was from the one last year, since it was hardly likely to have shown up 10 years ago, or so I'm thinking. So why he didn't say this last year I don't know. I was sure he was going to attribute this to my relatively ancient age, but he didn't. Instead he said atrophy is not uncommon in MS patients (which I knew, but I thought this happened in the later stages). However, I didn't say that.
He went on to say that he was designing a new research study, involving MS patients with brain atrophy. He plans to take skin samples from them and attempt to use these to grow neurons. How interesting. I'll be contacted soon about participating. This won't help my case, of course, but down the road it could help others.
Finally, he told me he was concerned about what he called 'the one breakkdown' I am having, meaning the leg weakness. (I guess, in fact I know ,that reported symptoms such as fatigue or temp. regulation don't carry a lot of weight, but measurable changes certainly got his attention.) He said he didn't see a reason not to continue Avonex at this time. It never crossed my mind that he would, as I know the DMDs are not perfect.
The nurse ordered blood work, and one vial was drawn. She wanted to make sure my kidneys are fine, I'm sure because in rare cases, kidney problems and contrast dye don't mix. She also ordered another Vit. D check. Fine with me.
I now have a script for PT, and I'm being sent to a different place, where she knows that neurological issues will be addressed. Also more Provigil, and Inderal (propanolol) for my essential tremor.
This was by far the best neuro experience of my life. I hope she'll manage things for me permanently. NPs don't get involved in initial assessment and diagnosis, but do handle the 'living with MS' aspect. She's just great! Even though I was told my brain is shrinking :-( I have more confidence now in the whole system. So life is good.
ess
I was scheduled to see the nurse practitioner, which was fine with me, since she's in the neurology clinic every day, whereas my regular neuro sees patients only one day a week (a standard practice there, where research is king). So getting a prompt appointment with him is pretty much impossible.
The nurse, it turned out, has been at Hopkins only since January, apparently lured away from another MS clinic by a doctor who had worked there with her. However, she has been an MS nurse since 1988, she told me. She was so nice! And so knowledgeable!
She apologized profusely for having me wait an hour past the scheduled time, but I knew what was happening because the reception clerk checked 3 times for me, and was super-kind and helpful. That's a rarity at Hopkins, which is huge and impersonal for the most part. Anyway, the nurse talked to me and asked loads of questions, took careful notes, and did a thorough neuro exam.
I told her I'd been having trouble with my right leg, specifically in lifting it from certain positions. I said I was concerned because it seemed to be slowly getting worse. When she did her testing on that, I asked what rating she was giving my hip flexor strength. She said 3 out of 5, which is significantly worse than last time. Then she asked if I'd been having trouble with my right arm. At first I said no, then mentioned that it sometimes bothers me when driving, sort of an achey feeling. It had never crossed my mind that that was related to MS. My car is only a few months old, and I thought that somehow the steering wheel was 'different.' However, she was clear that she thinks it is weakness. So she ordered not only a new brain MRI, but also cervical spine, thinking the right side weakness might orginate there.
I also told her that other long-standing symptoms had greatly lessened in recent months, but that I continued to suffer from fatigue, plus the relatively new heat regulation problem, sweating when others are quite comfortable, etc. I added that urine retention symptoms were much better but that I suffered from occasional extreme urge incontinence.
I had brought with me the films from my very first brain MRI, in March 2000. I had taken all the other zillion MRI stuff to other Hopkins appointments, but the earliest I had had was from 2003. I had wanted my neuro to take a look at the earliest one, because there was a lot less to see, but still abnormalities in the ventricular area. Well, just before I was seen by the nurse, my neuro left to go to a meeting. The nurse said he would return, and asked if I would wait. But instead of sending me back into the waiting area, she kept me in her examination room, repeated a few tests, and discussed lots of things in detail. So I was with her nearly 2 hours!
She had one of the fellows look at the 2000 one, and compare it with the 2009 MRI. She seems awfully good at this herself, and showed me lots of stuff I didn't know how to interpret. Still, we waited till Dr. X came back. Luckily, the patient after me was a no-show, so she had ample time. Finally Dr. X returned and she and he conferred.
Then he came in to see me. I am not clear on what he meant, but he said that he had looked at the MRIs, and that he found brain atrophy. I'm assuming this was from the one last year, since it was hardly likely to have shown up 10 years ago, or so I'm thinking. So why he didn't say this last year I don't know. I was sure he was going to attribute this to my relatively ancient age, but he didn't. Instead he said atrophy is not uncommon in MS patients (which I knew, but I thought this happened in the later stages). However, I didn't say that.
He went on to say that he was designing a new research study, involving MS patients with brain atrophy. He plans to take skin samples from them and attempt to use these to grow neurons. How interesting. I'll be contacted soon about participating. This won't help my case, of course, but down the road it could help others.
Finally, he told me he was concerned about what he called 'the one breakkdown' I am having, meaning the leg weakness. (I guess, in fact I know ,that reported symptoms such as fatigue or temp. regulation don't carry a lot of weight, but measurable changes certainly got his attention.) He said he didn't see a reason not to continue Avonex at this time. It never crossed my mind that he would, as I know the DMDs are not perfect.
The nurse ordered blood work, and one vial was drawn. She wanted to make sure my kidneys are fine, I'm sure because in rare cases, kidney problems and contrast dye don't mix. She also ordered another Vit. D check. Fine with me.
I now have a script for PT, and I'm being sent to a different place, where she knows that neurological issues will be addressed. Also more Provigil, and Inderal (propanolol) for my essential tremor.
This was by far the best neuro experience of my life. I hope she'll manage things for me permanently. NPs don't get involved in initial assessment and diagnosis, but do handle the 'living with MS' aspect. She's just great! Even though I was told my brain is shrinking :-( I have more confidence now in the whole system. So life is good.
ess
Hi all. I appreciate your comments so much! I'll be requesting all the reports from this appt., and will ask the NP to clarify the neuro's atrophy remarks. So I'll report back on this.
One thing I forgot to mention. The NP said my right knee reflex is somewhat brisk. That's the first time anything other than normal reflexes have been found.
But what else is different is the way she did the test. She had me sitting in a regular chair, feet on floor, knees at 90 degrees. Then, tap-tap with the hammer. I could feel a little internal jump in that knee each time she did it, and before she commented on it. However, my leg didn't move at all.
Has anyone else had the test done that way? I'm not questioning it, since she surely knows what she's doing, but that was a new one for me.
ess
One thing I forgot to mention. The NP said my right knee reflex is somewhat brisk. That's the first time anything other than normal reflexes have been found.
But what else is different is the way she did the test. She had me sitting in a regular chair, feet on floor, knees at 90 degrees. Then, tap-tap with the hammer. I could feel a little internal jump in that knee each time she did it, and before she commented on it. However, my leg didn't move at all.
Has anyone else had the test done that way? I'm not questioning it, since she surely knows what she's doing, but that was a new one for me.
ess
Sounds like a great Appt! That is wonderful. Keep us updated with the study.
Michelle
Michelle
Ess,
I'm so glad you had such a wonderful appointment with the NP! And I'd like to thank you for being willing to participate in the study :-)
Do you mind if I ask you a question? You mentioned temperature regulation....is there a known cause for that? My husband and I have been joking for the last year that my "thermostat is broken". I'm rarely comfortable when others are, I'm either too hot or too cold. You got me wondering what the cause could be.
Thank you for sharing your experience!
~Jess
I'm so glad you had such a wonderful appointment with the NP! And I'd like to thank you for being willing to participate in the study :-)
Do you mind if I ask you a question? You mentioned temperature regulation....is there a known cause for that? My husband and I have been joking for the last year that my "thermostat is broken". I'm rarely comfortable when others are, I'm either too hot or too cold. You got me wondering what the cause could be.
Thank you for sharing your experience!
~Jess
Hi Ess,
It really isn't me because I am still on vacation - my cell phone doesn't have a signal and I can't call anyone, but we have a solid wireless connection. If I were to be sneaking a peek at the forum while still on vacation I would have a few comments on this one, such as:
Good for you to be taken seriously. This NP sounds wonderful - there are some very good ones out there who truly take the time to listen and form their own objective opinions. Hopefully she will be with you a long, long time.
Acknowledging your changes with your muscles and especially the brain atrophy validates your hunches about what has been going on. I'm sorry the news isn't better, but as we always say, knowing is half the battle. Do you ever wonder how difficult it must be for our doctors to talk to us about our physical changes that aren't so good? If only they could always fix us.
PT, if done by the right folks, can really be beneficial. Even if it is just learning better ways to move to prevent injuries, it is a great idea for all of us. Take advantage of every last session you can get with them.
Thanks from all of us for agreeing to participate in this next study- who knows, brain atrophy occurs so many ways other than with MS. Your selflessness could benefit a whole lot of different people facing this problem.
And especially thanks for sharing all of this with us. This is how we learn more - sharing our own personal experiences at all levels.
So, when I get back from vacation I will take some time to let you know what I think! LOL
hugs and back to relaxing,
Lulu
It really isn't me because I am still on vacation - my cell phone doesn't have a signal and I can't call anyone, but we have a solid wireless connection. If I were to be sneaking a peek at the forum while still on vacation I would have a few comments on this one, such as:
Good for you to be taken seriously. This NP sounds wonderful - there are some very good ones out there who truly take the time to listen and form their own objective opinions. Hopefully she will be with you a long, long time.
Acknowledging your changes with your muscles and especially the brain atrophy validates your hunches about what has been going on. I'm sorry the news isn't better, but as we always say, knowing is half the battle. Do you ever wonder how difficult it must be for our doctors to talk to us about our physical changes that aren't so good? If only they could always fix us.
PT, if done by the right folks, can really be beneficial. Even if it is just learning better ways to move to prevent injuries, it is a great idea for all of us. Take advantage of every last session you can get with them.
Thanks from all of us for agreeing to participate in this next study- who knows, brain atrophy occurs so many ways other than with MS. Your selflessness could benefit a whole lot of different people facing this problem.
And especially thanks for sharing all of this with us. This is how we learn more - sharing our own personal experiences at all levels.
So, when I get back from vacation I will take some time to let you know what I think! LOL
hugs and back to relaxing,
Lulu
WOW!!!!!!!! With luck like this we should try you out at the casino!
Now this is top notch care!
Thank you so much Ess for telling us all about your appt. I couldn't be happier for you to be taken care of in this way. I always feel like I can see what you write to us. Felt like I was right there watching.
Heres to good progress w/the PT, and this goodness continuing!
(((hugs)))
shell
Now this is top notch care!
Thank you so much Ess for telling us all about your appt. I couldn't be happier for you to be taken care of in this way. I always feel like I can see what you write to us. Felt like I was right there watching.
Heres to good progress w/the PT, and this goodness continuing!
(((hugs)))
shell
That's awesome! It seems easier to breathe easy when we experience truly good health care, it puts the care back in to health care doesn't it:) I'm so happy for you.
Joani
Joani
Thankyou for taking the time to give us such detail about your appointment..it was really interesting and I am glad that you have had such a positive experience (at last). The reserach sounds promising (possibly for others rather than you as you indicated).
Keep us posted.
Love Sarah x
Keep us posted.
Love Sarah x
I think we should all head to ess' doctor! ;0) What a great positive post about a neuro experience. I am happy for you, ess. Sounds like you got a keeper!
Addi
Ess - Sounds like a FANTASTIC appointment!! You learned so much and your neuro learned so much all thanks to the NP. Great side bar about the brain atrophy research. Please keep us posted.
Jean - My opinion is if you are not happy with your neuro , you should do some research and ask around ( nurses area great source for this) about other neuro s who may be more approachable and able to deal with day to day issues. Just my 2 cents worth.
Ren
Jean - My opinion is if you are not happy with your neuro , you should do some research and ask around ( nurses area great source for this) about other neuro s who may be more approachable and able to deal with day to day issues. Just my 2 cents worth.
Ren
This is fabulous! Congrats on such a great experience. My doc is supposed to be very good with her knowledge, but she is certainly not helpful in assisting me to deal with the disease and take steps to improve my health -- such as therapy of any kind. If I want to do anything like that, I have to do it on my own.
If I mention a symptom, she just says "that is the way MS is, you will have these problems your whole life". Well, that's not helping me develop a life of quality!
I'm not sure whether I should see another doc or not. I am sure the diagnosis is correct, and the decision of which DMD to use is the best one -- however, I'd like to be more proactive in taking care of myself and have a doc that supports that.
Or maybe there aren't docs like that? Thoughts?
essdipity -- I'm very inspired by your story and I hope I can have the same experience someday!
If I mention a symptom, she just says "that is the way MS is, you will have these problems your whole life". Well, that's not helping me develop a life of quality!
I'm not sure whether I should see another doc or not. I am sure the diagnosis is correct, and the decision of which DMD to use is the best one -- however, I'd like to be more proactive in taking care of myself and have a doc that supports that.
Or maybe there aren't docs like that? Thoughts?
essdipity -- I'm very inspired by your story and I hope I can have the same experience someday!
Happy to hear this, essie. One of the most professional of the so-called professionals with whom I've consulted through my saga has been the NP at the MS clinic Lulu54 goes to for her neuro. She knew her stuff; my only negative was that I had the strong feeling she'd like to have said more but was afraid her bosses wouldn't back her.
About the atrophy comment; My first thought is that they might have just seen atrophy becouse they only now have those Y2K films to compare with those more current. In other words, there might be little change between 2003 and 2009, but more noticeable amounts from 2000 to 2009. Just one old preacher's speculation, FWIW.
Anyway, "they" say we only use about 10% of our brain power, so if you've lost 15%, you still have 85% to play around with, right? ;>D
We will pray that the success you've experienced with this visit is not only helpful, but indicative of days ahead.
About the atrophy comment; My first thought is that they might have just seen atrophy becouse they only now have those Y2K films to compare with those more current. In other words, there might be little change between 2003 and 2009, but more noticeable amounts from 2000 to 2009. Just one old preacher's speculation, FWIW.
Anyway, "they" say we only use about 10% of our brain power, so if you've lost 15%, you still have 85% to play around with, right? ;>D
We will pray that the success you've experienced with this visit is not only helpful, but indicative of days ahead.
Yay! It's so tough these days to find somebody you can trust... I'm glad this worked out for you. I hope she sticks around.
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