Aa
Update from neuro today
Well, I just feel like crying. I don't think most doctors fully comprehend how hard it is to hear, "What you have looks, sounds, smells, like MS, but since you don't have obvious lesions, I can't diagnose you." Every dr. thinks this is MS, or can't think of any other explanation for my sx, but here I am, in limbo.
The bright side is that she continues to treat my sx. She decided to start me on 1 g of solumedrol once a month. She said she thinks that is as effective as the DMDs, but since solumedrol is so cheap, no one will ever study it (seems all the more reason to study it, to me!) I had my first dose today and the poor nurse blew through two of my veins before agreeing to do it on the inside of my elbow, which is almost the only place anyone ever gets a vein on me.
She thinks some of my sx (increasing incoordination with my left leg, lack of sensation in some *important* areas) are side effects from the gabapentin. But would gabapentin cause incoordination in one specific limb, rather than all over?
Also, while she listened to my description of my limited movement in my jaw, she didn't recommend anything, unless you count the solumedrol, which maybe she is.
Anyway, she is going to do another MRI in the fall on a 3T with very thin slices. (My last one was on a weaker magnet with 10 mm slices.)
I just do feel like giving up. It honestly is easier just to ignore everything and pretend the sx aren't there, than to try and find a dx.
I asked what the relative harm in these two situations was: (1) I don't have MS, but took a DMD (she said very little potential harm there) and (2) I have MS but am not able to start on DMDs. She said with (2) she wasn't worried about it because I'm not getting worse right now (I think I am) and the monthly solumedrol is very effective. (I'm wondering if this is placebo treatment?? Has anyone ever heard of this before?)
Anyway, thanks for letting me get this off my chest. I'm feeling so down about this I couldn't even bring myself to call my mom or sister. :( Hubby doesn't really understand. Now to finally get some work done, that should take my mind off of things.
Stephanie
The bright side is that she continues to treat my sx. She decided to start me on 1 g of solumedrol once a month. She said she thinks that is as effective as the DMDs, but since solumedrol is so cheap, no one will ever study it (seems all the more reason to study it, to me!) I had my first dose today and the poor nurse blew through two of my veins before agreeing to do it on the inside of my elbow, which is almost the only place anyone ever gets a vein on me.
She thinks some of my sx (increasing incoordination with my left leg, lack of sensation in some *important* areas) are side effects from the gabapentin. But would gabapentin cause incoordination in one specific limb, rather than all over?
Also, while she listened to my description of my limited movement in my jaw, she didn't recommend anything, unless you count the solumedrol, which maybe she is.
Anyway, she is going to do another MRI in the fall on a 3T with very thin slices. (My last one was on a weaker magnet with 10 mm slices.)
I just do feel like giving up. It honestly is easier just to ignore everything and pretend the sx aren't there, than to try and find a dx.
I asked what the relative harm in these two situations was: (1) I don't have MS, but took a DMD (she said very little potential harm there) and (2) I have MS but am not able to start on DMDs. She said with (2) she wasn't worried about it because I'm not getting worse right now (I think I am) and the monthly solumedrol is very effective. (I'm wondering if this is placebo treatment?? Has anyone ever heard of this before?)
Anyway, thanks for letting me get this off my chest. I'm feeling so down about this I couldn't even bring myself to call my mom or sister. :( Hubby doesn't really understand. Now to finally get some work done, that should take my mind off of things.
Stephanie
Thank you all for your supportive words. I do feel better this morning--I no longer feel like I'm going to cry. I went home and baked banana bread with my two oldest girls, let them eat that and cereal for dinner and felt so much better just spending time with them and my little one (who is the sweetest, most fun soon to be three year old (on Monday!) ever) and my husband. :-) SO, now that you know I'm feeling better, I'll try to fill you all in on what I'm thinking of all this right now.
My first MS specialist 7 years ago may have been brilliant but had the worst bedside manner ever (terrible post-LP headache, wouldn't see me at the office, sent me to the ER, then told the ER I couldn't have a blood patch--was horribly ill for 5 days when he "consented" to let me have the blood patch. The anesthesologist who did it was HORRIFIED.) So I didn't want to go through that again, or try jumping from doctor to doctor.
So I looked at the MSNeuroratings and CLAMS-good doctors websides to find a doctor in my area that is well recommended by the patients. This one was, and I can see why. She spends an immense amount of time with pts (this also has to do with her ability to do so because she doesn't accept insurance). Did an amazingly careful neuro exam, reviewed my films, not the report, and explained to me what signs she saw and what areas of damage these signs suggested.
I didn't do a good job of remembering/explaining the series of the conversation yesterday, given my emotional state. She recommended the monthly IVSM before the conversation about the DMD. She recommended it because she was concerned that the gabapentin was causing side effects, and it might allow me to tape down the dosage. She also thought it might help with the spasticity in my lower jaw. (I hope it does!).
I had wanted to have a conversation with her to know exactly how she felt about dx w/o a positive MRI. She had mentioned at my first visit that there was some debate about whether it's possible to have MRI negative MS. (I tend to think that it must be just because we know the stronger machines pick up more lesions, so there must be some people who are just having all their lesions missed on the current set of technology. But it's probably a small fraction.) She backtracked on this and said there really isn't a debate. (That did bother me.) This was when she suggested doing the new MRI in the fall (as opposed to next April, when she had originally planned). It will be on a 3T with very thin slices, with no gaps, "top to bottom" (head, c-spine and thoracic.)
This is when she tried to reassure me by saying that the monthly IVSM *was* an MS treatment and works as well as the DMD (after I asked what the harm would be of starting on DMD if I don't have MS, vs. the potential harm of having MS and not being on DMD). So in retrospect, I don't think she ordered the monthly solumedrol as a placebo, but rather tried to make me feel like I was getting treatment for MS (rather than just the sx) because she can't dx me right now.
The one thing that's very hard for me to hear is that she thinks what I have looks just like MS, but that I can't get a dx right now. I know this is difficult for me (or anyone) to hear, but this morning I realized was that was actually one of the things I like about her, that she tries to be honest. She's telling me what she sees and what her criteria for dx are. I guess it's better than trying to convince me that my sx don't look like MS because I don't have a positive MRI at this time (which is basically what neuro #1 did).
I think I did a bad job with the conversation about diagnosing and treatment. I asked if there was anything else we should try to rule out, intending to show that I'm not wedded to an MS dx, but want to find out what's really going on. I think she might have thought I was saying she wasn't looking hard enough. Anyway, she did suggest that if my next MRI is negative, then I should get a second opinion. I thought she was suggesting she would drop me if my MRI was negative, although in retrospect, this was probably unfair to assume (I didn't say that to her, but it did upset me). These types of conversations are always so hard.
So my current plan is to wait for the 3T MRI in September. August and July are so busy for me anyway, it's not that much of a wait. I guess I'll see what it says and go from there. One step at a time. :-)
My sx have been varied (though I still have my original sx of parasthesia in my left arm and leg--these never really went away, though they did improve). I have bilateral TN, occipital neuralgia, ataxia, incoordination in my left hand, muscle spasticity in my jaw (probably related to the TN), hyper-reflexes (assymmetric with 3 beats on the left side), cant' walk on my heels w/ left foot, ... I know there's more but I'm forgetting. Not all of it started at the same time and I've also had previous episodes between the first and now, with an MS hug and lung fcn test showed "poor neuromuscular control".
Sorry for the length of this post. But I do so appreciate everyone's support, and I wanted to give a more clear (I hope) and less emotional update. I don't know what I'll do if I get a negative MRI in September. I will try my best not to doubt myself (I'll re-read the letter from the neuro-psychologist saying I don't have a psychiatric illness causing my sx!) and figure it out then.
Stephanie
My first MS specialist 7 years ago may have been brilliant but had the worst bedside manner ever (terrible post-LP headache, wouldn't see me at the office, sent me to the ER, then told the ER I couldn't have a blood patch--was horribly ill for 5 days when he "consented" to let me have the blood patch. The anesthesologist who did it was HORRIFIED.) So I didn't want to go through that again, or try jumping from doctor to doctor.
So I looked at the MSNeuroratings and CLAMS-good doctors websides to find a doctor in my area that is well recommended by the patients. This one was, and I can see why. She spends an immense amount of time with pts (this also has to do with her ability to do so because she doesn't accept insurance). Did an amazingly careful neuro exam, reviewed my films, not the report, and explained to me what signs she saw and what areas of damage these signs suggested.
I didn't do a good job of remembering/explaining the series of the conversation yesterday, given my emotional state. She recommended the monthly IVSM before the conversation about the DMD. She recommended it because she was concerned that the gabapentin was causing side effects, and it might allow me to tape down the dosage. She also thought it might help with the spasticity in my lower jaw. (I hope it does!).
I had wanted to have a conversation with her to know exactly how she felt about dx w/o a positive MRI. She had mentioned at my first visit that there was some debate about whether it's possible to have MRI negative MS. (I tend to think that it must be just because we know the stronger machines pick up more lesions, so there must be some people who are just having all their lesions missed on the current set of technology. But it's probably a small fraction.) She backtracked on this and said there really isn't a debate. (That did bother me.) This was when she suggested doing the new MRI in the fall (as opposed to next April, when she had originally planned). It will be on a 3T with very thin slices, with no gaps, "top to bottom" (head, c-spine and thoracic.)
This is when she tried to reassure me by saying that the monthly IVSM *was* an MS treatment and works as well as the DMD (after I asked what the harm would be of starting on DMD if I don't have MS, vs. the potential harm of having MS and not being on DMD). So in retrospect, I don't think she ordered the monthly solumedrol as a placebo, but rather tried to make me feel like I was getting treatment for MS (rather than just the sx) because she can't dx me right now.
The one thing that's very hard for me to hear is that she thinks what I have looks just like MS, but that I can't get a dx right now. I know this is difficult for me (or anyone) to hear, but this morning I realized was that was actually one of the things I like about her, that she tries to be honest. She's telling me what she sees and what her criteria for dx are. I guess it's better than trying to convince me that my sx don't look like MS because I don't have a positive MRI at this time (which is basically what neuro #1 did).
I think I did a bad job with the conversation about diagnosing and treatment. I asked if there was anything else we should try to rule out, intending to show that I'm not wedded to an MS dx, but want to find out what's really going on. I think she might have thought I was saying she wasn't looking hard enough. Anyway, she did suggest that if my next MRI is negative, then I should get a second opinion. I thought she was suggesting she would drop me if my MRI was negative, although in retrospect, this was probably unfair to assume (I didn't say that to her, but it did upset me). These types of conversations are always so hard.
So my current plan is to wait for the 3T MRI in September. August and July are so busy for me anyway, it's not that much of a wait. I guess I'll see what it says and go from there. One step at a time. :-)
My sx have been varied (though I still have my original sx of parasthesia in my left arm and leg--these never really went away, though they did improve). I have bilateral TN, occipital neuralgia, ataxia, incoordination in my left hand, muscle spasticity in my jaw (probably related to the TN), hyper-reflexes (assymmetric with 3 beats on the left side), cant' walk on my heels w/ left foot, ... I know there's more but I'm forgetting. Not all of it started at the same time and I've also had previous episodes between the first and now, with an MS hug and lung fcn test showed "poor neuromuscular control".
Sorry for the length of this post. But I do so appreciate everyone's support, and I wanted to give a more clear (I hope) and less emotional update. I don't know what I'll do if I get a negative MRI in September. I will try my best not to doubt myself (I'll re-read the letter from the neuro-psychologist saying I don't have a psychiatric illness causing my sx!) and figure it out then.
Stephanie
Hang in there. I feel for you. I ditto everyone else. I think you are being given a line.
Alex
Alex
OMG................................
Not only do I have a fit coming on, but I already had one and it didn't do the job! I HAD to do bills first and I fidgetted and made nasty remarks the whole time upsetting my most sensitive kitty.
This really is WRONG on too many levels - but not too many that I am not going to point them out even though every one else has pointed them out, too.
Stephanie, this neurologist is either living in some dreamland where she believes that she is the best neuro in the world and whatever she does is better than what anyone else does OR she is willfully lying to you to keep you quiet!
First, she doesn't understand anything about MRIs. ANY neuro worth their salt would know that an MRI done with 10mm slices is likely to miss small lesions. Knowing that, if they indeed had a suspicion of MS (and she obviously does), would demand that the MRI be repeated using the MS Protocol. This requires that slices be no greater than 3mm and that they be contiguous - meaning they don't skip any large sections. If this means repeating the MRI a month after it was done, then so be it. The only rationale for waiting "until the fall" would be the patient demanding the wait. Period. If she thinks the Protocol-guided MRI with a higher magnet and resolution strength might show something important then it needs to be done NOW. (read that NOW!)
For newbies reading this and wondering: The slice is the distance between the images the MRI captures, moving progressively through the brain and cord. The thin slices are needed because MS lesions can be as small as pinpoint, but they only really "count" the ones that are larger than 2mm. Hmmm, how many 2mm lesions can be missed between slices of 10mm? It's like hiding a diamond ring in a loaf of bread and only making cuts every 4 inches. When you don't find the ring this way can you truly decide the ring is not in the loaf????
Now, we get to the place where I am throwing a full-scale berserker routine. She, herself, has determined that treatment with 1 day of IV steroids once a month is as good as the DMDs. What arrogance! and complete ignorance of the science in the literature! There is no data that suggests that this is effective and good evidence that it isn't!!! She told you they have not studied using Solumedrol because there is no profit to Big Pharma? What a load of CARP!!! There are many hundreds of studies in the literature trying difference regimens of high-dose steroids to treat MS! There are many neurologists who use 1 day of IV steroids per month to "augment" the use of a DMD, but not steroids alone. My clinic does this routinely for people who are very symptomatic.
Why would she say she has "discovered" something different? I hope she has published the study, and her experience that shows it, but I bet this is her way of deluding herself (or you, it's not clear).
If she believes that you have MS, then she is obligated to do the appropiate rule-outs of the mimics and, I believe to present you with the option for treatment.
In reality, she is either lying or lazy. If she is lazy, then she isn't reading the MS literature (like I am) and doesn't know that there has been HEAVY research into the use of Solumedrol. Either way, this is not a doctor who you want to rely on to be telling you the truth!
I am sooo frosted here!
So, she also made up the reassurance that the gabapentin would cause just isolated areas of numbness asymmetrically. I glad you saw thorough that one.
She says you aren't getting worse, but you know you are. That means she is discounting your reporting of symptoms. Does she not know that the determination of a relapse is based on patient-reported symptoms?? Does she not know that you live in your body and know far earlier than she does if you are getting worse??
And, if she tells you that she thinks this is MS, how can she say that there is EVER a period that you are not getting worse???! This disease must be considered to be active ALL THE TIME whether or not the lesions are increasing! As we all know there are more things at work in MS than just T2 Hyperintense lesions. There are T1 Black Holes. There are gray matter lesions and there are abnormal changes in the Noraml Appearing White Matter (NAWM).
Yes, I think the once a month steroids are a placebo to keep you quiet.
You need the 3T MRI done with MS Protocol. I believe that if she really harbors the belief that this is MS, she should include your cervical and thoracic spine when it is done. Also, she should direct the radiologist to evaluate for atrophy. (It is true that atrophy can appear because of positioning). If you have abnormal atrophy then that is an MRI finding suggestive of a neurodegenerative disease like MS and provides objective evidence. T-Lynn, one of our veteran members had horrible disease and "normal MRIs for a long time until they finally found marked atrophy. They diagnosed her then. The lesions only showed up when they did the MRI on a 3T machine.
So, as it stands, you don't have a negative MRI at all. In my mind you haven't had a MRI yet recently. With 10mm slices we know nothing. The 3T done right is very important.
If the MRI is truly negative and the LP is negative it will be hard for you to get a diagnosis. Sad, but true. But, still you should be with a physician that is not lazy and ignorant or that lies to you. In my mind it doesn't matter which is happening - they are both an outrage.
As for fitting into the CIS category. With a history of multiple attacks, the only way that you would fit is if all of the attacks involved the same symptoms. If you did fit a CIS definition, your chances of having MS with a negative MRI (which you don't yet have) would be about 20%.
Steph, I hope you still have the strength to keep fighting this. You desperately need a second opinion, but after the 3T of the brain and spinal cord.
I am SO mad! And I am sorry this is happening to you.
Quix
Not only do I have a fit coming on, but I already had one and it didn't do the job! I HAD to do bills first and I fidgetted and made nasty remarks the whole time upsetting my most sensitive kitty.
This really is WRONG on too many levels - but not too many that I am not going to point them out even though every one else has pointed them out, too.
Stephanie, this neurologist is either living in some dreamland where she believes that she is the best neuro in the world and whatever she does is better than what anyone else does OR she is willfully lying to you to keep you quiet!
First, she doesn't understand anything about MRIs. ANY neuro worth their salt would know that an MRI done with 10mm slices is likely to miss small lesions. Knowing that, if they indeed had a suspicion of MS (and she obviously does), would demand that the MRI be repeated using the MS Protocol. This requires that slices be no greater than 3mm and that they be contiguous - meaning they don't skip any large sections. If this means repeating the MRI a month after it was done, then so be it. The only rationale for waiting "until the fall" would be the patient demanding the wait. Period. If she thinks the Protocol-guided MRI with a higher magnet and resolution strength might show something important then it needs to be done NOW. (read that NOW!)
For newbies reading this and wondering: The slice is the distance between the images the MRI captures, moving progressively through the brain and cord. The thin slices are needed because MS lesions can be as small as pinpoint, but they only really "count" the ones that are larger than 2mm. Hmmm, how many 2mm lesions can be missed between slices of 10mm? It's like hiding a diamond ring in a loaf of bread and only making cuts every 4 inches. When you don't find the ring this way can you truly decide the ring is not in the loaf????
Now, we get to the place where I am throwing a full-scale berserker routine. She, herself, has determined that treatment with 1 day of IV steroids once a month is as good as the DMDs. What arrogance! and complete ignorance of the science in the literature! There is no data that suggests that this is effective and good evidence that it isn't!!! She told you they have not studied using Solumedrol because there is no profit to Big Pharma? What a load of CARP!!! There are many hundreds of studies in the literature trying difference regimens of high-dose steroids to treat MS! There are many neurologists who use 1 day of IV steroids per month to "augment" the use of a DMD, but not steroids alone. My clinic does this routinely for people who are very symptomatic.
Why would she say she has "discovered" something different? I hope she has published the study, and her experience that shows it, but I bet this is her way of deluding herself (or you, it's not clear).
If she believes that you have MS, then she is obligated to do the appropiate rule-outs of the mimics and, I believe to present you with the option for treatment.
In reality, she is either lying or lazy. If she is lazy, then she isn't reading the MS literature (like I am) and doesn't know that there has been HEAVY research into the use of Solumedrol. Either way, this is not a doctor who you want to rely on to be telling you the truth!
I am sooo frosted here!
So, she also made up the reassurance that the gabapentin would cause just isolated areas of numbness asymmetrically. I glad you saw thorough that one.
She says you aren't getting worse, but you know you are. That means she is discounting your reporting of symptoms. Does she not know that the determination of a relapse is based on patient-reported symptoms?? Does she not know that you live in your body and know far earlier than she does if you are getting worse??
And, if she tells you that she thinks this is MS, how can she say that there is EVER a period that you are not getting worse???! This disease must be considered to be active ALL THE TIME whether or not the lesions are increasing! As we all know there are more things at work in MS than just T2 Hyperintense lesions. There are T1 Black Holes. There are gray matter lesions and there are abnormal changes in the Noraml Appearing White Matter (NAWM).
Yes, I think the once a month steroids are a placebo to keep you quiet.
You need the 3T MRI done with MS Protocol. I believe that if she really harbors the belief that this is MS, she should include your cervical and thoracic spine when it is done. Also, she should direct the radiologist to evaluate for atrophy. (It is true that atrophy can appear because of positioning). If you have abnormal atrophy then that is an MRI finding suggestive of a neurodegenerative disease like MS and provides objective evidence. T-Lynn, one of our veteran members had horrible disease and "normal MRIs for a long time until they finally found marked atrophy. They diagnosed her then. The lesions only showed up when they did the MRI on a 3T machine.
So, as it stands, you don't have a negative MRI at all. In my mind you haven't had a MRI yet recently. With 10mm slices we know nothing. The 3T done right is very important.
If the MRI is truly negative and the LP is negative it will be hard for you to get a diagnosis. Sad, but true. But, still you should be with a physician that is not lazy and ignorant or that lies to you. In my mind it doesn't matter which is happening - they are both an outrage.
As for fitting into the CIS category. With a history of multiple attacks, the only way that you would fit is if all of the attacks involved the same symptoms. If you did fit a CIS definition, your chances of having MS with a negative MRI (which you don't yet have) would be about 20%.
Steph, I hope you still have the strength to keep fighting this. You desperately need a second opinion, but after the 3T of the brain and spinal cord.
I am SO mad! And I am sorry this is happening to you.
Quix
Stephanie,
you definitely got some resounding answers here. I am still angry that this EXPERT would lie to you about the steroids. If your MRI and next visit get you no results I would take my bat and ball and go play somewhere else. This expert must have been on the playground thinking its recess rather than attending lectures that explained the difference.
If she was trying to placate you, that's even worse. For goodness sake, A physician has to have an honest relationship with their patients and not one built on lies and falsehoods.
I'm still so sorry you are going through this,
Lulu
you definitely got some resounding answers here. I am still angry that this EXPERT would lie to you about the steroids. If your MRI and next visit get you no results I would take my bat and ball and go play somewhere else. This expert must have been on the playground thinking its recess rather than attending lectures that explained the difference.
If she was trying to placate you, that's even worse. For goodness sake, A physician has to have an honest relationship with their patients and not one built on lies and falsehoods.
I'm still so sorry you are going through this,
Lulu
i certainly understand the frustration and torment. the "What you have looks, sounds, smells, like MS, but since you don't have obvious lesions, I can't diagnose you." just makes you feel so lost and alone.
add to that, obvious lesions for demyelinating disease + history of o-bands + history of symptoms documented, and they still won't diagnosis! any other doctor not affiliated with the VA would have already made a diagnosis.
Steph74, i totally can feel what walking in your shoes feels like. sometimes i just go numb from anger & frustration. hang in there at least they are going for the 3T in the Fall. i have requested 3T and the VA just ignores me.
add to that, obvious lesions for demyelinating disease + history of o-bands + history of symptoms documented, and they still won't diagnosis! any other doctor not affiliated with the VA would have already made a diagnosis.
Steph74, i totally can feel what walking in your shoes feels like. sometimes i just go numb from anger & frustration. hang in there at least they are going for the 3T in the Fall. i have requested 3T and the VA just ignores me.
Oh, I'm having a little Quix-like fit here! You deserve so much more! Who rated this woman highly!? Some patients that had large neon signs affixed to their heads that said "MS!!!"? Fellow neurologists that she sees at seminars?
I totally agree with Bio about her. Having just mailed off 7 letters of complaint about my last MS specialist, including to my insurance company and the Office for Civil Rights, her facility's Integrity board members, CEO, clinical director, etc. I've posted about her on msneuroratings. And I'm seeing a new MS specialist at a different facility in Sept.
I have had many a good cry; that was my third neurologist, and I've only been at this for 1 1/2 years. Not to mention a whole lot of other specialists. I keep fighting because I know that I deserve answers, and the fact that the first neuro-radiologist that read my brain MRI said "far and away most likely to be MS", and we've ruled out so much.
I'm glad you can see the bright side, and hope that the SoluMedrol helps with symptoms, and the 3T MRI brings something to light. I wonder what she'll say when/if the new report notes atrophy? My neuro ignored the report of linear spinal lesions
The previous MRI had 10 mm slices?!! The largest I had was 5 mm. Wow.
I hope you can find a good MS specialist to see. I live on the west coast, and have considered finding a way to go to NY, as I've heard so many good things on this forum. I'm hoping my new neuro will see things with a fresh eye and be willing to offer hope and help.
Wishing the best for you,
Kathy
I totally agree with Bio about her. Having just mailed off 7 letters of complaint about my last MS specialist, including to my insurance company and the Office for Civil Rights, her facility's Integrity board members, CEO, clinical director, etc. I've posted about her on msneuroratings. And I'm seeing a new MS specialist at a different facility in Sept.
I have had many a good cry; that was my third neurologist, and I've only been at this for 1 1/2 years. Not to mention a whole lot of other specialists. I keep fighting because I know that I deserve answers, and the fact that the first neuro-radiologist that read my brain MRI said "far and away most likely to be MS", and we've ruled out so much.
I'm glad you can see the bright side, and hope that the SoluMedrol helps with symptoms, and the 3T MRI brings something to light. I wonder what she'll say when/if the new report notes atrophy? My neuro ignored the report of linear spinal lesions
The previous MRI had 10 mm slices?!! The largest I had was 5 mm. Wow.
I hope you can find a good MS specialist to see. I live on the west coast, and have considered finding a way to go to NY, as I've heard so many good things on this forum. I'm hoping my new neuro will see things with a fresh eye and be willing to offer hope and help.
Wishing the best for you,
Kathy
Nothing productive to add, I just wanted to pop in with a cyber-hug, because I also know how you feel.
When you said it makes it sound like you want to be sick but you don't, that really hit home...my husband thinks I am a hypochondriac and that I am just looking for some disease to have. :-(
Not at all! I know something is wrong with me (I am undiagnosed but I *do* have lesions, just not typical MS lesions), and I just want to know what it is. Of course I don't *want* it to be MS, but if it is I want to know so I can do something about it.
Hang in there, I'm sorry you are dealing with this limbo,
Laurel
When you said it makes it sound like you want to be sick but you don't, that really hit home...my husband thinks I am a hypochondriac and that I am just looking for some disease to have. :-(
Not at all! I know something is wrong with me (I am undiagnosed but I *do* have lesions, just not typical MS lesions), and I just want to know what it is. Of course I don't *want* it to be MS, but if it is I want to know so I can do something about it.
Hang in there, I'm sorry you are dealing with this limbo,
Laurel
She's ignoring the evidence before her eyes, and in spite of her Georgetown degree, she doesn't have the cajones to make a genuine clinical diagnosis of MS...AND she brushed off a report about BRAIN ATROPHY even in the context of your clinical symptoms? AND she lied to you or misinformed you about the steroid? Do you see how clearly she is not providing you health care?
Go see another doctor if you can. This woman apparently can't see the forest for the trees. I think what she's doing borders on malpractice, and I really do recommend that you try for a second opinion. Can you get to NY?
I'm sorry about your bad appt. So many of us have left a doctor's office feeling the way you do now. I wonder if it makes them happy to know that there are legions of people who leave their presence trying to fight back tears? Nice.
Bio
Go see another doctor if you can. This woman apparently can't see the forest for the trees. I think what she's doing borders on malpractice, and I really do recommend that you try for a second opinion. Can you get to NY?
I'm sorry about your bad appt. So many of us have left a doctor's office feeling the way you do now. I wonder if it makes them happy to know that there are legions of people who leave their presence trying to fight back tears? Nice.
Bio
She is an MS specialist (and a highly rated one, too!) Her degree is from Georgetown.
I know the DMD are different. I think she was just trying to make me feel like I am getting treatment. That's why I'm wondering if it's a placebo treatment. :)
I don't fit the CIS definition because I've definitely had more than one attack. My MRIs from 7 years ago are all clear. The most recent brain one was NOT done on an MS protocol (ordered by someone else before I saw her), but it did note some slight atrophy, though no lesions. I asked her about the atrophy and she said I could have just been positioned wrong in the machine.
She said she had no "objective" evidence on which to dx me. I asked if by "objective" she meant laboratory or imaging and she said yes. Apparently her clinical judgment doesn't count as objective.
I know the DMD are different. I think she was just trying to make me feel like I am getting treatment. That's why I'm wondering if it's a placebo treatment. :)
I don't fit the CIS definition because I've definitely had more than one attack. My MRIs from 7 years ago are all clear. The most recent brain one was NOT done on an MS protocol (ordered by someone else before I saw her), but it did note some slight atrophy, though no lesions. I asked her about the atrophy and she said I could have just been positioned wrong in the machine.
She said she had no "objective" evidence on which to dx me. I asked if by "objective" she meant laboratory or imaging and she said yes. Apparently her clinical judgment doesn't count as objective.
Thank you both. I knew people here would understand. It's been 7 years since this started. In the beginning my sx were mostly sensory, and my neuro exam was fine. After 12 months or so of searching, I decided the search was worse for me than the sx. Plus, things were starting to improve. I didn't believe the "stressed out grad student/mother" explanation, but I also didn't feel like fighting anymore. I let the dx of "complicated migraine" be the one I told my family and left it at that. But I did tell myself if things ever got worse I would pursue it again.
So, here I am. I have had other minor "flares" through the years, but in February I started a full blown one. My neuro exam is definitely NOT normal now, and seems to be worse than it was in April, but the doctor thought it was constant. I saw the neuro-psych and neuro-surgeon she wanted me to see, both think MS, but still, no answers.
It seems obvious to me that some people might just have *very* small lesions, that don't show up, but are still causing damage, but most neuros don't buy it.
It's a terrible thing to find yourself wishing and hoping that one, or two or three lesions will JUST SHOW UP on your MRI. It makes it sound like I want to be sick, but I don't. I'd love to feel better and have all this be gone, but since it's not going away, WHY can't it just show up for the doctors???
Wobbly, I can't believe you still don't have a dx. I've been following your story. I'm amazed they haven't dx you yet.
Wadeheather, no "probable" dx, no dx at all. Just trigeminal neuralgia, ataxia, etc, etc,--just a description of the sx.
So, here I am. I have had other minor "flares" through the years, but in February I started a full blown one. My neuro exam is definitely NOT normal now, and seems to be worse than it was in April, but the doctor thought it was constant. I saw the neuro-psych and neuro-surgeon she wanted me to see, both think MS, but still, no answers.
It seems obvious to me that some people might just have *very* small lesions, that don't show up, but are still causing damage, but most neuros don't buy it.
It's a terrible thing to find yourself wishing and hoping that one, or two or three lesions will JUST SHOW UP on your MRI. It makes it sound like I want to be sick, but I don't. I'd love to feel better and have all this be gone, but since it's not going away, WHY can't it just show up for the doctors???
Wobbly, I can't believe you still don't have a dx. I've been following your story. I'm amazed they haven't dx you yet.
Wadeheather, no "probable" dx, no dx at all. Just trigeminal neuralgia, ataxia, etc, etc,--just a description of the sx.
No, no , no.... the solumedrol is not the same in effectiveness as the DMD's. Its function is totally different. Where on earth did this neuro get her degree from? She obviously is NOT an MS specialist or she would not be saying such an outlandish thing. The solu-medrol (prednisone) helps by shrinking inflammation but does absolutely nothing for myelin protection or repair.
I'm sure glad Quix isn't around because she would be have a major fit about now.
She can dx you on CIS (clinically isolated symptoms) evidenced by your symptoms - you only have to look like MS once to be eligible to use the DMD's for CIS. We've talked about that here before, but at least Rebif and Copaxone are approved by the FDA for use. This would be the perfect answer for your scenario #2..
This is just all wrong on so many levels. Perhaps now is the time to find another neuro who knows MS ? You don't have to have visible lesions on your MRI to be dx'd.
Pass the kleenex box because I think I need to have a cry, too.
Lulu
I'm sure glad Quix isn't around because she would be have a major fit about now.
She can dx you on CIS (clinically isolated symptoms) evidenced by your symptoms - you only have to look like MS once to be eligible to use the DMD's for CIS. We've talked about that here before, but at least Rebif and Copaxone are approved by the FDA for use. This would be the perfect answer for your scenario #2..
This is just all wrong on so many levels. Perhaps now is the time to find another neuro who knows MS ? You don't have to have visible lesions on your MRI to be dx'd.
Pass the kleenex box because I think I need to have a cry, too.
Lulu
I'm so sorry this is happening to you. The good news is is that it looks, smells, sounds like MS - which means she definately is not telling you it's all in your head. That's a step above me right now. Also, she is treating you! That's great. Did she use the term "probable" ms? If I could get to that point I think it would be good enough not to give up - Maybe your next MRI will show some lesions. It's crazy how many of us in limbo land wish something would show up so someone could SEE that we don't feel good.
Did you read the "superneuro" thread? You should.
My hubby doesn't get it either - actually used the word "hypochondriac" once. Lovely, I know. You are not alone. That's why we are all here.
Keep fighting! You can do it!
Did you read the "superneuro" thread? You should.
My hubby doesn't get it either - actually used the word "hypochondriac" once. Lovely, I know. You are not alone. That's why we are all here.
Keep fighting! You can do it!
oh my, I know exactly how you must be feeling. I'm not sure of the solumedrol treatment. I'm sure others with more experience in this will jump in to say how they feel about it.... I'm still not Dx and it's been a few years for me.. my first MRI was in 2006.. and shows lesions, but still no Dx... so I understand abit on how you feel.
it's difficult when you don't have answers to how you feel and how it effects your life and husband, family etc... then you have to let you family know there is no answers and have to wait again.. I'm sorry this is taking so long for you too.
being in Limbo is not a fun place to be.. hang in there you are not alone with this..
we are here for you to chat.. and if you need to stop thinking of your symptoms for awhile...just take a break from it all and keep track of things if they should reappear..
stay in touch and let us know how things are going OK.. Your part of this forum and we care how you feel
take care
wobbly
undx
it's difficult when you don't have answers to how you feel and how it effects your life and husband, family etc... then you have to let you family know there is no answers and have to wait again.. I'm sorry this is taking so long for you too.
being in Limbo is not a fun place to be.. hang in there you are not alone with this..
we are here for you to chat.. and if you need to stop thinking of your symptoms for awhile...just take a break from it all and keep track of things if they should reappear..
stay in touch and let us know how things are going OK.. Your part of this forum and we care how you feel
take care
wobbly
undx
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