Aa
Switch to Avonex and other neuro happenings
Saw my Hopkins neuro yesterday, and the big upshot is that I will go on Avonex once the bureaucracy and paperwork are done. As many here know, I turned out to be wildly allergic to Copaxone. The doctor left the choice of meds (Avonex vs. Rebif) up to me. I said that I'd like help with this decision and of course got none, so I picked Avonex because I'd rather feel sick once a week than 3 times. He and 2 other associates at Hopkins just shrugged and said that's fine.
From my viewpoint my visit had to do with a lot more than that, because my pain level has been if anything worse, and unremitting. Not just since the last visit, but since September. Nearly all of the pain has been in my legs, a lot of it the burning, tingling kind, but also occasional stabbing pains, and deep, unremitting muscle aching, mostly in my thighs. So the neuro fixed only on the burning part, which also is in my feet, and quizzed me extensively about diabetes. He almost refused to believe that I have no blood relatives with that disease, and I felt as if I were on trial. At least according to my PCP and the routine testing he has done, I am not diabetic. He ordered his own blood work for that, which is fine with me, and also, I found out, another ANA test, why I don't know. And he prescribed Lyrica, which I had taken briefly a couple of years ago.
I gave him the report of my sleep study, and once he learned I am seeing a sleep specialist, he lost interest in that. I'd really like to know if my chronic insomnia with extremely poor REM sleep has to do with MS, but I guess I'll never find out. I told him my fatigue has been terrible and debilitating for the past 3 weeks, adn he thinks that's likely to be from insomnia, meaning once the sleep specialist prescribes whatever she gives me (in about 2 weeks), the fatigue will take care of itself. That'd be great, and I hope for the best, but I've had this insomnia for years and years, with it being worse lately, and didn't have such fatigue. So we will see.
The neuro asked me whether my MRIs had been done at Hopkins. Dear heavens, that was the whole reason for his diagnosis in January! That the radiologists elsewhere, for years and years, had attributed the abnormalities to microvascular disease, and he had strongly disagreed. I don't think he even had that notation in my file! In dealing with this man I constantly have to be as deft as possible in reminding him of things he has concluded. Anyway, he then said okay, then I want MRIs here at Hopkins, so he ordered brain and cervical. Not thoracic, who knows why. He commented to his associates, not to me, that my leg stuff could come from a cervical lesion. It's a good thing Hopkins is a teaching place or I'd never get any info. I pick up a lot from what he says to others.
He also ordered an EMG test, I guess on general principles. He is not saying there is no MS, but that maybe there is peripheral neuropathy too. Okay fine, I just want to get rid of this pain.
The scheduling people worked miracles of efficiency and have me down for the MRIs and EMG on the same day, in about 2 weeks. I need to get such stuff done, because I'm having foot surgery on July 1 and that will impede me for weeks and weeks.
When all the Hopkins things are done I will have to wheedle the reports out of the neuro's secretary, then email the neuro commenting on the results as tactfully as I can word things, and ask for comments back. I really doubt I'd get anything unless I go through all this.
As is obvious, I really don't like this man, but at least he is doing what needs to be done. I will get MRIs on a 3T, which is all to the good. Yet he seems to have no interest in my case, nor does he spend one second more than when I'm there reviewing things. When I came in he said he might have some other doctor see me. I asked who it was, and he said a Fellow, meaning a regular neuro there and not a resident. I asked if he himself isn't my doctor, and he said all of them are my doctor. Very glib, like other canned answers he has given, and very uninterested. Ultimately he saw me himself, but I'm wondering if I might not have been better off with someone else. My neuro did no exam yesteray whatever other than using a tuning fork on my feet. Period. Not like Quix's neuro for sure!
Well, this last part is just rant, so thank you for giving me a place to do that. At least I'm getting treatment, which is more than so many others here can say. Neuros are impossible!
Oh, by the way, I got the Lyrica script filled right away. It's 100 mg twice a day. No build-up, and he said nothing about this part. Now I'm woozy to say the least, but luckily have nothing planned for today or tomorrow as I'm not sure it would yet be safe to drive. The Lyrica is helping the burning and tingling, though! Already! It's doing nothing for the severe thigh aches, which may be due to weakness, for all I know, since the neuro did no exam this time. I've had documented hip flexor weakness previously, and maybe it's worse. Well, one thing at a time.
If it's as hot where you are as it is here on the East Coast, please take care. We're having a tropical heat wave!
ess
From my viewpoint my visit had to do with a lot more than that, because my pain level has been if anything worse, and unremitting. Not just since the last visit, but since September. Nearly all of the pain has been in my legs, a lot of it the burning, tingling kind, but also occasional stabbing pains, and deep, unremitting muscle aching, mostly in my thighs. So the neuro fixed only on the burning part, which also is in my feet, and quizzed me extensively about diabetes. He almost refused to believe that I have no blood relatives with that disease, and I felt as if I were on trial. At least according to my PCP and the routine testing he has done, I am not diabetic. He ordered his own blood work for that, which is fine with me, and also, I found out, another ANA test, why I don't know. And he prescribed Lyrica, which I had taken briefly a couple of years ago.
I gave him the report of my sleep study, and once he learned I am seeing a sleep specialist, he lost interest in that. I'd really like to know if my chronic insomnia with extremely poor REM sleep has to do with MS, but I guess I'll never find out. I told him my fatigue has been terrible and debilitating for the past 3 weeks, adn he thinks that's likely to be from insomnia, meaning once the sleep specialist prescribes whatever she gives me (in about 2 weeks), the fatigue will take care of itself. That'd be great, and I hope for the best, but I've had this insomnia for years and years, with it being worse lately, and didn't have such fatigue. So we will see.
The neuro asked me whether my MRIs had been done at Hopkins. Dear heavens, that was the whole reason for his diagnosis in January! That the radiologists elsewhere, for years and years, had attributed the abnormalities to microvascular disease, and he had strongly disagreed. I don't think he even had that notation in my file! In dealing with this man I constantly have to be as deft as possible in reminding him of things he has concluded. Anyway, he then said okay, then I want MRIs here at Hopkins, so he ordered brain and cervical. Not thoracic, who knows why. He commented to his associates, not to me, that my leg stuff could come from a cervical lesion. It's a good thing Hopkins is a teaching place or I'd never get any info. I pick up a lot from what he says to others.
He also ordered an EMG test, I guess on general principles. He is not saying there is no MS, but that maybe there is peripheral neuropathy too. Okay fine, I just want to get rid of this pain.
The scheduling people worked miracles of efficiency and have me down for the MRIs and EMG on the same day, in about 2 weeks. I need to get such stuff done, because I'm having foot surgery on July 1 and that will impede me for weeks and weeks.
When all the Hopkins things are done I will have to wheedle the reports out of the neuro's secretary, then email the neuro commenting on the results as tactfully as I can word things, and ask for comments back. I really doubt I'd get anything unless I go through all this.
As is obvious, I really don't like this man, but at least he is doing what needs to be done. I will get MRIs on a 3T, which is all to the good. Yet he seems to have no interest in my case, nor does he spend one second more than when I'm there reviewing things. When I came in he said he might have some other doctor see me. I asked who it was, and he said a Fellow, meaning a regular neuro there and not a resident. I asked if he himself isn't my doctor, and he said all of them are my doctor. Very glib, like other canned answers he has given, and very uninterested. Ultimately he saw me himself, but I'm wondering if I might not have been better off with someone else. My neuro did no exam yesteray whatever other than using a tuning fork on my feet. Period. Not like Quix's neuro for sure!
Well, this last part is just rant, so thank you for giving me a place to do that. At least I'm getting treatment, which is more than so many others here can say. Neuros are impossible!
Oh, by the way, I got the Lyrica script filled right away. It's 100 mg twice a day. No build-up, and he said nothing about this part. Now I'm woozy to say the least, but luckily have nothing planned for today or tomorrow as I'm not sure it would yet be safe to drive. The Lyrica is helping the burning and tingling, though! Already! It's doing nothing for the severe thigh aches, which may be due to weakness, for all I know, since the neuro did no exam this time. I've had documented hip flexor weakness previously, and maybe it's worse. Well, one thing at a time.
If it's as hot where you are as it is here on the East Coast, please take care. We're having a tropical heat wave!
ess
As ever, thanks for your comments and concern.
Elaine, you're right about the 'burning' buzzword. But another one is 'stabbing,' it seems to me, especially if the feet are involved. Actually anything about the feet sends them into a diabetes frenzy, or at least a peripheral neuropathy one. And I told him I've had aching pain in my arms, but when he explained that to a student who had come in late, arms had become hands, Not true.
Well, I just have to await the outcome of the EMG and the bloodwork to find out if something else is going on. He is not using any of that to detract from his wimpy-worded MS diagnosis, however.
I don't think I have spasticity but of course can't be sure. I get considerably more than normal cramping in my calves, but that's all. I do have deep aching pain in my thighs. I am now past the adjustment to a big dose of Lyrica, but I have to say I made the most of it! My insomnia is awful, but this past weekend I slept and slept. It was heavenly! Now that I'm past the hurdle, the Lyrica isn't working as well, but it's still much better than nothing. By far. Just doesn't work on the ache part.
My right arm has been aching periodically, much more than the left, sometimes extending all the way through the shoulder blade. As with the left, I get a weak feeling in my forearms, along the bone. But now another odd thing is happening that clearly has nothing to do with all this. Just above my right elbow on the back of my arm I have a big painless swelling. It's really big, maybe 3 1/2 inches long and 2 inches wide. There is no mass there, just out of shape blub. This is right over the main area where I had 3 surgeries about 15 years ago for a very bad fracture. It has been developing very slowly during the past couple of weeks, and at first I thought I was just imagining things. Not so, and I'm slow to acknowledge medical symptoms. I can't think what the cause could be.
Well, a week from today I see my primary, so I'm sure it will keep till then.
Again, I so appreciate my forum family's interest in my medical doings. I don't get much support otherwise.
ess
Elaine, you're right about the 'burning' buzzword. But another one is 'stabbing,' it seems to me, especially if the feet are involved. Actually anything about the feet sends them into a diabetes frenzy, or at least a peripheral neuropathy one. And I told him I've had aching pain in my arms, but when he explained that to a student who had come in late, arms had become hands, Not true.
Well, I just have to await the outcome of the EMG and the bloodwork to find out if something else is going on. He is not using any of that to detract from his wimpy-worded MS diagnosis, however.
I don't think I have spasticity but of course can't be sure. I get considerably more than normal cramping in my calves, but that's all. I do have deep aching pain in my thighs. I am now past the adjustment to a big dose of Lyrica, but I have to say I made the most of it! My insomnia is awful, but this past weekend I slept and slept. It was heavenly! Now that I'm past the hurdle, the Lyrica isn't working as well, but it's still much better than nothing. By far. Just doesn't work on the ache part.
My right arm has been aching periodically, much more than the left, sometimes extending all the way through the shoulder blade. As with the left, I get a weak feeling in my forearms, along the bone. But now another odd thing is happening that clearly has nothing to do with all this. Just above my right elbow on the back of my arm I have a big painless swelling. It's really big, maybe 3 1/2 inches long and 2 inches wide. There is no mass there, just out of shape blub. This is right over the main area where I had 3 surgeries about 15 years ago for a very bad fracture. It has been developing very slowly during the past couple of weeks, and at first I thought I was just imagining things. Not so, and I'm slow to acknowledge medical symptoms. I can't think what the cause could be.
Well, a week from today I see my primary, so I'm sure it will keep till then.
Again, I so appreciate my forum family's interest in my medical doings. I don't get much support otherwise.
ess
Hi ess,
Sorry for your ordeal with your neuro appt. Sometimes the big teaching hospitals are very frustrating. At least you are getting treatment, like you said.. Do you think any of your pain is related to spasticity?
I had to tell Craig at the neuro appt at Univ of MD to not say he had any burning pain. He really doesn't now, but about six months ago he had burning thighs. Now he just has stabbing pain in his thighs and feet.
Anyway, as soon as he would say the word, "burning" the neuros would find an "out" and start asking about diabetes. Craig is not diabetic and has no family history of diabetes. They could never quite pass things off on diabetes because that didn't explain the loss of balance, the spasticity, the inability to lift his legs when supine etc. But boy did they want to have an escape.
You handle your neuro quite well. Keep it up and good luck with the approval process with the Avonex.
Elaine
So he stopped using the "Burning" word and diabetes never came up again. And also, BTW, he had four normal EMG's in 2007 so there is no peripheral neuropathy.
I hope you continue to find relief from the Lyrica, ess.
Elaine
Sorry for your ordeal with your neuro appt. Sometimes the big teaching hospitals are very frustrating. At least you are getting treatment, like you said.. Do you think any of your pain is related to spasticity?
I had to tell Craig at the neuro appt at Univ of MD to not say he had any burning pain. He really doesn't now, but about six months ago he had burning thighs. Now he just has stabbing pain in his thighs and feet.
Anyway, as soon as he would say the word, "burning" the neuros would find an "out" and start asking about diabetes. Craig is not diabetic and has no family history of diabetes. They could never quite pass things off on diabetes because that didn't explain the loss of balance, the spasticity, the inability to lift his legs when supine etc. But boy did they want to have an escape.
You handle your neuro quite well. Keep it up and good luck with the approval process with the Avonex.
Elaine
So he stopped using the "Burning" word and diabetes never came up again. And also, BTW, he had four normal EMG's in 2007 so there is no peripheral neuropathy.
I hope you continue to find relief from the Lyrica, ess.
Elaine
I really feel for you hun, you keep on at your neuro till you get a plain english answer, I will have to apolgise to mine because i think he was trying not to worry me as for the report he did put down demylination I read as psychiatric,(I was having a bad brain day) now work that one out lol.
Hope it all works out for you
Hugs
Cj
Hope it all works out for you
Hugs
Cj
Hey Ess,
We do expect so much more "greatness" from these top neurologist don't we. Very, very frustrating. I had a better appt. at Hopkins than that, but have not been back since last year.
I really can't figure out why on earth these Docs don't provide more advice where DMS's are concerned. I will never understand this. This was my experience too and it makes no sense to me. It is nice to have such control with "choice" however, knowing these meds to a great extent required a medical degree for sure!
BUT, your outcome is good girl!!! Getting this done on the 3T - Yea, Yea!
If it's any consolation, I've been seeing my Doc for over a year, and I still have to remind him of what he's told me in the past - just unreal.
ttys,
SL
We do expect so much more "greatness" from these top neurologist don't we. Very, very frustrating. I had a better appt. at Hopkins than that, but have not been back since last year.
I really can't figure out why on earth these Docs don't provide more advice where DMS's are concerned. I will never understand this. This was my experience too and it makes no sense to me. It is nice to have such control with "choice" however, knowing these meds to a great extent required a medical degree for sure!
BUT, your outcome is good girl!!! Getting this done on the 3T - Yea, Yea!
If it's any consolation, I've been seeing my Doc for over a year, and I still have to remind him of what he's told me in the past - just unreal.
ttys,
SL
~
How utterly disappointing! If only these doctors knew how much we invest in these long-anticipated appointments with them. All the answers we are waiting for them to freely give without having to pry them out, and not by spouted sideways out of their mouths to a medical student, but to US the patient, whose lives are truly affected by their answers and information. Dagnabbit. What a poop.And he isn't even your doctor; THEY are "your doctor" -- collectively, I guess. Interesting. Silly you for thinking otherwise.
Did it sound to you for a while that he was rethinking the MS diagnosis for diabetes? And then dropped it with the sleep problem evidence? I don't quite understand him. Did he even glance at your chart before coming in the room?
It's a shame he didn't demonstrate a proper neuro exam for his students. Maybe that's one reason many of us aren't getting good exams: No one's teaching them! I hope he doesn't have the gall to charge your insurance for an exam. I don't know why that would bother me so. But after not having seen you in SO long, and with you being SO miserable, it's AWFUL that he didn't at the very least test your strength. And, truly, I think he should have given you a full exam regardless, to be able to say he's monitoring the progression of things. Maybe it's not important, but I can't see how it wouldn't be, especially with your symptoms worsening or even just continuing. Dagnabbit.
I AM glad the Lyrica's helping. We'll give him that. And the 3T, but he's at Hopkins -- I bet everyone gets the 3T. (aren't I catty? Meow!) It's a shame you have to stay on top of things so meticulously to find out the results from the MRI so you can email him for comments so tactfully. He should be the action man. We know this won't happen, though, so I'm glad you're taking the lead, and I know you will stay on top of things. Good! But, I'm sorry you have to. What a poop. Dagnabbit.
I hope the Lyrica continues to make an improvement for you, and that the sleep doc finds something to really help with getting restful nights. How miserable! We've got to get you better!
Let us know how the new testing comes out, and try to get some deep Zzzzzzzzz's*
Love ya,
*
How utterly disappointing! If only these doctors knew how much we invest in these long-anticipated appointments with them. All the answers we are waiting for them to freely give without having to pry them out, and not by spouted sideways out of their mouths to a medical student, but to US the patient, whose lives are truly affected by their answers and information. Dagnabbit. What a poop.And he isn't even your doctor; THEY are "your doctor" -- collectively, I guess. Interesting. Silly you for thinking otherwise.
Did it sound to you for a while that he was rethinking the MS diagnosis for diabetes? And then dropped it with the sleep problem evidence? I don't quite understand him. Did he even glance at your chart before coming in the room?
It's a shame he didn't demonstrate a proper neuro exam for his students. Maybe that's one reason many of us aren't getting good exams: No one's teaching them! I hope he doesn't have the gall to charge your insurance for an exam. I don't know why that would bother me so. But after not having seen you in SO long, and with you being SO miserable, it's AWFUL that he didn't at the very least test your strength. And, truly, I think he should have given you a full exam regardless, to be able to say he's monitoring the progression of things. Maybe it's not important, but I can't see how it wouldn't be, especially with your symptoms worsening or even just continuing. Dagnabbit.
I AM glad the Lyrica's helping. We'll give him that. And the 3T, but he's at Hopkins -- I bet everyone gets the 3T. (aren't I catty? Meow!) It's a shame you have to stay on top of things so meticulously to find out the results from the MRI so you can email him for comments so tactfully. He should be the action man. We know this won't happen, though, so I'm glad you're taking the lead, and I know you will stay on top of things. Good! But, I'm sorry you have to. What a poop. Dagnabbit.
I hope the Lyrica continues to make an improvement for you, and that the sleep doc finds something to really help with getting restful nights. How miserable! We've got to get you better!
Let us know how the new testing comes out, and try to get some deep Zzzzzzzzz's*
Love ya,
*
OMG what an ordeal your appointment was. It sounds like a very frustrating experience. Your neuro sounds so arrogant! Maybe you should take him up on his suggestion that you be seen by someone else on the team. Couldn't be any worse...one would hope!
Well I'm glad at least that you are getting some relief from Lyrica. Thanks for sharing that, as I may ask to switch to it from Neurontin. I too have that burning pain, for me it's in my hand and is really bothersome, and Neurontin does not seem to be helping.
Stay cool, put your feet up, grab a good book or the Saturday paper, have a tall cool glass of lemonade, and relax. Easier said than done when you're in pain, I know; maybe a little wooziness from the Lyrica isn't necessarily a bad thing!
db
Well I'm glad at least that you are getting some relief from Lyrica. Thanks for sharing that, as I may ask to switch to it from Neurontin. I too have that burning pain, for me it's in my hand and is really bothersome, and Neurontin does not seem to be helping.
Stay cool, put your feet up, grab a good book or the Saturday paper, have a tall cool glass of lemonade, and relax. Easier said than done when you're in pain, I know; maybe a little wooziness from the Lyrica isn't necessarily a bad thing!
db
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
