Aa
My MS specialist woke me up this morning...
I left her a message yesterday concerning my possible Trigeminal Neuralgia. I've been sleep deficient, so when she called about 10:45 am, I was asleep and dreaming, with a dry, dry mouth. She asked if I was OK!
I took a sip of water and said that I was OK, that the pain has calmed down and I had slept in. She went into and explanation of TN and that I could continue to take extra Lyrica for it. I tried to describe the pain I had from eating frozen yogurt today, and she told me that wasn't the typical presentation, then backed up and said there was atypical TN and murmured a few things.
I asked if there was a way to discover the cause for my TN or did she just consider it idiopathic? She said that it can be idiopathic, then told me the stuff I'd read about it on Wikipedia. I pointed out that my neuro-ophthalmologist had noted a lesion on my pons, and questioned whether that could be relevant.
She hemmed and hawed about where the lesion was located precisely and then said it didn't matter, that the treatment was the same. I wanted to scream "It does matter, since you don't think I have MS or anything other that small vessel ischemic disease!", but I restrained myself.
I did point out that I've had these symptoms on and off over the years, and that it wasn't something new that suddenly appeared. She cut me off before I could give her the history of my sympoms that could be atypical TN.
I changed tactics, and asked her if she, or they there at the MS clinic, had particular rheumatologists that they referred people to when they were having symptoms that showed the possibility of another auto-immune disorder. She told me that my PCP could refer me.
I told her that that hadn't worked out in the past, and since I have been having dry mouth, dry eyes, vaginal dryness for years, and the neuro-ophtha said my Shirmer's test suggested Sjogren's, then I was interested in a Dr. that was familiar with the condition.
She started to mention blood tests, I told her I was seronegative, and she stated that seeing a rheumatologist was a good idea, as Sjogren's wasn't something that she treated. I asked her about the rheumys at OHSU, and she said that they were all good, though she was used to working with Dr. R and Dr. ?.
I then asked if I could call and make an appointment, or if I needed a referral. She said I needed a referral. Finally, I asked her if she could give me a referral, and she said she would.
This is the short version; it was kind of like pulling teeth!
I just hope she doesn't think she can drop me since she's referring me; oh well, if she does, and the rheumy thinks I might have a mixed deal going on, I can transfer to a neurologist that's better to work with.
Kathy
I took a sip of water and said that I was OK, that the pain has calmed down and I had slept in. She went into and explanation of TN and that I could continue to take extra Lyrica for it. I tried to describe the pain I had from eating frozen yogurt today, and she told me that wasn't the typical presentation, then backed up and said there was atypical TN and murmured a few things.
I asked if there was a way to discover the cause for my TN or did she just consider it idiopathic? She said that it can be idiopathic, then told me the stuff I'd read about it on Wikipedia. I pointed out that my neuro-ophthalmologist had noted a lesion on my pons, and questioned whether that could be relevant.
She hemmed and hawed about where the lesion was located precisely and then said it didn't matter, that the treatment was the same. I wanted to scream "It does matter, since you don't think I have MS or anything other that small vessel ischemic disease!", but I restrained myself.
I did point out that I've had these symptoms on and off over the years, and that it wasn't something new that suddenly appeared. She cut me off before I could give her the history of my sympoms that could be atypical TN.
I changed tactics, and asked her if she, or they there at the MS clinic, had particular rheumatologists that they referred people to when they were having symptoms that showed the possibility of another auto-immune disorder. She told me that my PCP could refer me.
I told her that that hadn't worked out in the past, and since I have been having dry mouth, dry eyes, vaginal dryness for years, and the neuro-ophtha said my Shirmer's test suggested Sjogren's, then I was interested in a Dr. that was familiar with the condition.
She started to mention blood tests, I told her I was seronegative, and she stated that seeing a rheumatologist was a good idea, as Sjogren's wasn't something that she treated. I asked her about the rheumys at OHSU, and she said that they were all good, though she was used to working with Dr. R and Dr. ?.
I then asked if I could call and make an appointment, or if I needed a referral. She said I needed a referral. Finally, I asked her if she could give me a referral, and she said she would.
This is the short version; it was kind of like pulling teeth!
I just hope she doesn't think she can drop me since she's referring me; oh well, if she does, and the rheumy thinks I might have a mixed deal going on, I can transfer to a neurologist that's better to work with.
Kathy
Hi Kathy,
Great articles!! You're like me, when in doubt, GOOGLE!!!!
Stay tough, friend, and you will get some answers, I'm sure.
I'm cheering you on, always!!!!
Hugs,
doni
Great articles!! You're like me, when in doubt, GOOGLE!!!!
Stay tough, friend, and you will get some answers, I'm sure.
I'm cheering you on, always!!!!
Hugs,
doni
I decided to do a search on MS and trigeminal neuralgia, and found some interesting articles; I believe I mentioned that my neuro-opthalmologist noted that I have a lesion in my pons? :o)
I wonder if I should print these out for my MS specialist? I doubt that it would make much difference to her, but it might make me feel better, and it might make my next neurologist take a closer look at my brain MRIs, and maybe order that 3T a little sooner.
Kathy
~~~~~~~~~~~~~~~~~~~~~~~~
Linear pontine trigeminal root lesions in multiple sclerosis: clinical and magnetic resonance imaging studies in 5 cases
Nakashima I, Fujihara K, Kimpara T, et al.
Arch Neurol 2001, 58(1):101-104
Background: Magnetic resonance imaging (MRI) is useful for demonstrating demyelinating lesions in patients with multiple sclerosis (MS). Magnetic resonance imaging studies show that MS lesions are generally not uniform in shape, size, or distribution. Linearly shaped lesions at the trigeminal root entry zone have been occasionally reported in single cases of MS, but, to our knowlege, the frequency and the clinical features of such patients have not been comprehensively characterized.
Objective: To describe the frequency and the clinical and laboratory features of patients with MS who had linearly shaped lesions at the trigeminal root as seen on MRI.
Design And Setting: A retrospective review of medical records and MRI films of Japanese patients with MS admitted to a university hospital and its affiliated hospital in Sendai, Japan.
Patients and Methods: Brain MRI films of 74 consecutive Japanese patients with MS (51 females and 23 males) were studied retrospectively and the clinical and laboratory features of the patients with linearly shaped lesions at the trigeminal root were also investigated retrospectively.
Results: Five patients (6.8%) were shown to have T1-weighted-hypointense, T2-weighted-hyperintense, nonenhanced linear lesions in the pons on MRI, and these were uniformly localized in the intramedullary portion of the trigeminal root. All of these patients had clinically definite MS and had various types of facial sensory disturbances, such as neuralgia (1 patient), hypesthesia (2 patients), or paresthesia (3 patients). No other clinical or laboratory feature was characteristic in these 5 patients.
Conclusions: Linear pontine trigeminal root lesions were common in our patients with MS. They were associated with various facial sensory symptoms. Since similar lesions are formed in animal models of herpes simplex virus infection, further study is needed to clarify whether these MS lesions are virally induced.
Trigeminal neuralgia in patients with multiple sclerosis: lesion localization with magnetic resonance imaging
Gass A, Kitchen N, MacManus DG, et al.
Neurology 1997, 49(4):1142-1144
We performed conventional T2-weighted brain MRI examinations in six patients with multiple sclerosis (MS) and trigeminal neuralgia. In all patients brainstem lesions in positions expected to involve trigeminal fibers, particularly the entry zone of sensory fibers, were demonstrated. Compression of the trigeminal nerve by ectatic vessels, a recognized cause of idiopathic trigeminal neuralgia, was not observed. We conclude that in MS trigeminal neuralgia is usually caused by demyelinating lesions affecting pontine trigeminal pathways.
I wonder if I should print these out for my MS specialist? I doubt that it would make much difference to her, but it might make me feel better, and it might make my next neurologist take a closer look at my brain MRIs, and maybe order that 3T a little sooner.
Kathy
~~~~~~~~~~~~~~~~~~~~~~~~
Linear pontine trigeminal root lesions in multiple sclerosis: clinical and magnetic resonance imaging studies in 5 cases
Nakashima I, Fujihara K, Kimpara T, et al.
Arch Neurol 2001, 58(1):101-104
Background: Magnetic resonance imaging (MRI) is useful for demonstrating demyelinating lesions in patients with multiple sclerosis (MS). Magnetic resonance imaging studies show that MS lesions are generally not uniform in shape, size, or distribution. Linearly shaped lesions at the trigeminal root entry zone have been occasionally reported in single cases of MS, but, to our knowlege, the frequency and the clinical features of such patients have not been comprehensively characterized.
Objective: To describe the frequency and the clinical and laboratory features of patients with MS who had linearly shaped lesions at the trigeminal root as seen on MRI.
Design And Setting: A retrospective review of medical records and MRI films of Japanese patients with MS admitted to a university hospital and its affiliated hospital in Sendai, Japan.
Patients and Methods: Brain MRI films of 74 consecutive Japanese patients with MS (51 females and 23 males) were studied retrospectively and the clinical and laboratory features of the patients with linearly shaped lesions at the trigeminal root were also investigated retrospectively.
Results: Five patients (6.8%) were shown to have T1-weighted-hypointense, T2-weighted-hyperintense, nonenhanced linear lesions in the pons on MRI, and these were uniformly localized in the intramedullary portion of the trigeminal root. All of these patients had clinically definite MS and had various types of facial sensory disturbances, such as neuralgia (1 patient), hypesthesia (2 patients), or paresthesia (3 patients). No other clinical or laboratory feature was characteristic in these 5 patients.
Conclusions: Linear pontine trigeminal root lesions were common in our patients with MS. They were associated with various facial sensory symptoms. Since similar lesions are formed in animal models of herpes simplex virus infection, further study is needed to clarify whether these MS lesions are virally induced.
Trigeminal neuralgia in patients with multiple sclerosis: lesion localization with magnetic resonance imaging
Gass A, Kitchen N, MacManus DG, et al.
Neurology 1997, 49(4):1142-1144
We performed conventional T2-weighted brain MRI examinations in six patients with multiple sclerosis (MS) and trigeminal neuralgia. In all patients brainstem lesions in positions expected to involve trigeminal fibers, particularly the entry zone of sensory fibers, were demonstrated. Compression of the trigeminal nerve by ectatic vessels, a recognized cause of idiopathic trigeminal neuralgia, was not observed. We conclude that in MS trigeminal neuralgia is usually caused by demyelinating lesions affecting pontine trigeminal pathways.
You reminded me of my strengths, and I was also reminded of my MS specialist's weaknesses.
I finally wrote a note asking for a response to the letter of complaint and journal entry that I hand delivered to her office in November, regarding the appt. in early Oct. when I was in a flare of neurological symptoms and her chart notes didn't reflect that at all. I had also questioned her ongoing belief that I have small vessel ischemic disease, without evidence or history to back that belief up.
I mentioned that I hadn't made a formal HIPAA request for review of my chart notes, but that I had expected some response, and that I am now requesting that she read the letter and journal and respond.
We shall see!
Kathy
I finally wrote a note asking for a response to the letter of complaint and journal entry that I hand delivered to her office in November, regarding the appt. in early Oct. when I was in a flare of neurological symptoms and her chart notes didn't reflect that at all. I had also questioned her ongoing belief that I have small vessel ischemic disease, without evidence or history to back that belief up.
I mentioned that I hadn't made a formal HIPAA request for review of my chart notes, but that I had expected some response, and that I am now requesting that she read the letter and journal and respond.
We shall see!
Kathy
I'm not sure where this strength to push ahead comes from; pure stubborness? :o)
I didn't see your post when I was replying to terry's, and then went to my Sjogren's World forum to ask if anyone knows of any excellent rheumatologists in my area.
As for your GP telling you it was a 3T when it was a 1.5; I'd want to slap her! I wouldn't, of course, but I would make it very clear and be very sure about any further tests, whatever they were.
I called the MRI department at my hospital to see if my MRIs were done according to the MS protocol, and was told that they "were sure" that they had been. I seriously doubt that, but the doctor's I've seen since then haven't been able to tell me if the MRIs were done under the MS protocol.
Drives me buggy! I thought under MS protocol, aside from the size of slices and all that, they were supposed to list the size and location of lesions, which mine did not. Of course, there were so many lesions, but the neuro-optha was able to say that one was located on the pons.
I'll try to send you some of my stubborness, determination, or tough spirit, whatever you want to call it. Thank you for complimenting me on my ability to keep going. The alternative is unthinkable!
You're not a wimp, by any means! I have faith that you'll be able to effectively communicate your needs in the future. Having all of us here together, knowing what to ask for and what the wrong answers are, helps us all to be stronger, more resilient.
Love and hugs,
Kathy
I didn't see your post when I was replying to terry's, and then went to my Sjogren's World forum to ask if anyone knows of any excellent rheumatologists in my area.
As for your GP telling you it was a 3T when it was a 1.5; I'd want to slap her! I wouldn't, of course, but I would make it very clear and be very sure about any further tests, whatever they were.
I called the MRI department at my hospital to see if my MRIs were done according to the MS protocol, and was told that they "were sure" that they had been. I seriously doubt that, but the doctor's I've seen since then haven't been able to tell me if the MRIs were done under the MS protocol.
Drives me buggy! I thought under MS protocol, aside from the size of slices and all that, they were supposed to list the size and location of lesions, which mine did not. Of course, there were so many lesions, but the neuro-optha was able to say that one was located on the pons.
I'll try to send you some of my stubborness, determination, or tough spirit, whatever you want to call it. Thank you for complimenting me on my ability to keep going. The alternative is unthinkable!
You're not a wimp, by any means! I have faith that you'll be able to effectively communicate your needs in the future. Having all of us here together, knowing what to ask for and what the wrong answers are, helps us all to be stronger, more resilient.
Love and hugs,
Kathy
I agree; I want my money back for the appointment where her chart notes didn't note any of the abnormal neuro responses the one time I saw her during a flare of symptoms!
Ha ha ha.
I'm hanging on, keeping myself informed and prepared for battle against incompetence, or is it just lazyness?
You hang in there, too. We'll make it through.
Kathy
Ha ha ha.
I'm hanging on, keeping myself informed and prepared for battle against incompetence, or is it just lazyness?
You hang in there, too. We'll make it through.
Kathy
Hi Kathy,
Well, at least she called back and is willing to refer you to a rhemy. That's all I see that was at all productive from your conversation.
I just want to say how proud I am of you and how you just keep on pushing without falter. I need to borrow some of your tough spirit. I always thought I was tough until 2007, now I just consider myself a big wimp.....hahaha
I did do something positive this morning. I was told by my GP when she ordered the first brain MRI that it was on a 3T machine. I never questioned her at all. Well, in the time since I have often wondered about this and it has been on my mind for a while.
After the results of my tests on Tues, this kept staying on my mind, don't know why, just couldn't help wondering. Well, this morning I called the hospital and found out it wasn't a 3T, but a 1.5T!!
This makes the results easier to take, but really ticks me off!!!
I intend to be more forceful and outspoken from this point on and to ask questions and get answers before I have any tests I will end up paying for. I also intend to talk straight to my neuro and tell him that any tests he schedules needs to be essential because I have already paid close to $3,000 for MRIs that I feel were useless toward finding a dx for me.
Right now I'm really frustrated. How do you keep going? Can you send some of it to me? hahaha
Hope the TN goes away soon and you feel better.
Hugs,
doni
Well, at least she called back and is willing to refer you to a rhemy. That's all I see that was at all productive from your conversation.
I just want to say how proud I am of you and how you just keep on pushing without falter. I need to borrow some of your tough spirit. I always thought I was tough until 2007, now I just consider myself a big wimp.....hahaha
I did do something positive this morning. I was told by my GP when she ordered the first brain MRI that it was on a 3T machine. I never questioned her at all. Well, in the time since I have often wondered about this and it has been on my mind for a while.
After the results of my tests on Tues, this kept staying on my mind, don't know why, just couldn't help wondering. Well, this morning I called the hospital and found out it wasn't a 3T, but a 1.5T!!
This makes the results easier to take, but really ticks me off!!!
I intend to be more forceful and outspoken from this point on and to ask questions and get answers before I have any tests I will end up paying for. I also intend to talk straight to my neuro and tell him that any tests he schedules needs to be essential because I have already paid close to $3,000 for MRIs that I feel were useless toward finding a dx for me.
Right now I'm really frustrated. How do you keep going? Can you send some of it to me? hahaha
Hope the TN goes away soon and you feel better.
Hugs,
doni
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
