Aa
Is it time to push for answers again??
I met Quixotic1 through a thread on another forum and came over here to check this place out. I never even knew you guys were here!!
I have been through the ringer with diagnostics and have come up with much less than a definitive dx.
I have been having problems for about 8 years. First attack of sx was a few months after the birth of my second child. It was pretty short lived and the basic diagnostics came up negative (no MRI - just bloodwork and a CT scan) so when the sx went away, I moved on and never questioned it.
Second incident was in 2004 and it has still never completely resolved. I have seen 4 neuros, all of whom agree that I have an abnormal neuro exam (+Rhomberg, clonus, hyperreflexia, torsional nystagmus, ataxic gait, etc.) and most agree that MS is the most likely suspect but that my MRI is abnormal but not typical for MS. One of the four (from a world famous MS clinic in Ohio) completely ruled out MS despite the abnormal neuro exam and abnormal MRI and told me to seek therapy to deal with a condition which he said will probably never be able to be dx'd.
That neuro in Ohio really destroyed my self confidence. He basically down played all of my sx and signs and told me I was too worried about these problems and to suck it up and deal with it - essentially move on with my life becasue there were no answers for me. He actually told me to take my sx meds, get a good therapist and forget about this.
My present MS Specialist calls this atypical MS or sometimes CNS Demyelinating Disease, but will not prescribe typical MS disease modifying drugs. I have about a dozen lesions, but none are periventricular. Mine are subcortical, some are ovoid, but some are more round. So, that is the sticking point with me because the EP's were normal and the LP was normal.
I can't complain too much about my treatment. He has had me on pulsed IV steroids to help keep me stable, he rx's whatever meds I need for sx management. I am taking Provigil and I am on 80 mg of Baclofen to attempt to keep the spasticity at bay. However, for the longest time I have felt that we are far too hung up on the MRI. I have only had brain MRI's for the last 4 years. The last time my c-spine was imaged was in June of 2004.
He made a comment at one appt about watching my brain MRI for changes and if / when there is a change then he will pursue repeating some of the other tests to see if we got an early false negative on some of them. I have moments when I am sure eventually things will change (i.e. get worse) and then other moments where I believe that neuro in Ohio and think that there will never be an answer for me.
It is so hard for us lay people to figure out how hard to push for answers. I actually cancelled an opthalmologist appt and neuro appt this year because I just couldn't handle the same old routine. I don't see the neuro again until October and hope that I will feel strong enough to keep that appt.
I have been through the ringer with diagnostics and have come up with much less than a definitive dx.
I have been having problems for about 8 years. First attack of sx was a few months after the birth of my second child. It was pretty short lived and the basic diagnostics came up negative (no MRI - just bloodwork and a CT scan) so when the sx went away, I moved on and never questioned it.
Second incident was in 2004 and it has still never completely resolved. I have seen 4 neuros, all of whom agree that I have an abnormal neuro exam (+Rhomberg, clonus, hyperreflexia, torsional nystagmus, ataxic gait, etc.) and most agree that MS is the most likely suspect but that my MRI is abnormal but not typical for MS. One of the four (from a world famous MS clinic in Ohio) completely ruled out MS despite the abnormal neuro exam and abnormal MRI and told me to seek therapy to deal with a condition which he said will probably never be able to be dx'd.
That neuro in Ohio really destroyed my self confidence. He basically down played all of my sx and signs and told me I was too worried about these problems and to suck it up and deal with it - essentially move on with my life becasue there were no answers for me. He actually told me to take my sx meds, get a good therapist and forget about this.
My present MS Specialist calls this atypical MS or sometimes CNS Demyelinating Disease, but will not prescribe typical MS disease modifying drugs. I have about a dozen lesions, but none are periventricular. Mine are subcortical, some are ovoid, but some are more round. So, that is the sticking point with me because the EP's were normal and the LP was normal.
I can't complain too much about my treatment. He has had me on pulsed IV steroids to help keep me stable, he rx's whatever meds I need for sx management. I am taking Provigil and I am on 80 mg of Baclofen to attempt to keep the spasticity at bay. However, for the longest time I have felt that we are far too hung up on the MRI. I have only had brain MRI's for the last 4 years. The last time my c-spine was imaged was in June of 2004.
He made a comment at one appt about watching my brain MRI for changes and if / when there is a change then he will pursue repeating some of the other tests to see if we got an early false negative on some of them. I have moments when I am sure eventually things will change (i.e. get worse) and then other moments where I believe that neuro in Ohio and think that there will never be an answer for me.
It is so hard for us lay people to figure out how hard to push for answers. I actually cancelled an opthalmologist appt and neuro appt this year because I just couldn't handle the same old routine. I don't see the neuro again until October and hope that I will feel strong enough to keep that appt.
Thanks for thinking of me! I haven't done anything yet. My Grandma came to live with me at the end of April and we have been trying to get her settled and still have to make one trip out west to finalize everything. So, no time to put anything into motion yet.
I think my first step will be to go back to the opth and have my eyes checked and get his records in order because he was the first one to document the torsional nystagmus. Also, just need to see if there are any changes in my eyes.
Later in the summer, I will have to get my other records in order and I think I will write my neuro a letter to use as a starting point.
Does it sound like a good plan?
I think my first step will be to go back to the opth and have my eyes checked and get his records in order because he was the first one to document the torsional nystagmus. Also, just need to see if there are any changes in my eyes.
Later in the summer, I will have to get my other records in order and I think I will write my neuro a letter to use as a starting point.
Does it sound like a good plan?
Hi Holly -
Just checking in on you. You move forward at all? Anything you need help with?
How are your spirits? Let us know if you can,
-SL
Just checking in on you. You move forward at all? Anything you need help with?
How are your spirits? Let us know if you can,
-SL
It is posted! I even put in part that I think I left out of the above about how the CCF neuro actually noted a couple of possible lesions near one of the ventricles that no one else had ever mentioned, but he still saw fit to blow me off. It seems like he made up his mind once he saw all of my documentation and preparation. He particularly hated my sx timeline! That was proof positive to him that I was wallowing in my condition or something.
We need a quick retell of your story on the "How Many of You...?" Thread trying to get a handle on how many people have had horrid experiences being dismissed by a neurologist. If you want to, of course.
Quix
Quix
Quix I can't thank you enough. I really feel a lot stronger about this than I have in a couple of years.
I had honestly never thought of doing this in this manner. I feel like I can actually do this. I'm just amazed. It all seems so simple, really. We just can't see the forest for the trees!
Now, I have to find some energy to start the record gathering....
Holly
I had honestly never thought of doing this in this manner. I feel like I can actually do this. I'm just amazed. It all seems so simple, really. We just can't see the forest for the trees!
Now, I have to find some energy to start the record gathering....
Holly
Since you have a working relationship with your current neuro, I'd like to make a suggestion. May a longer appointment with him to review all of your case. Many times after a long period of no diagnosis and repeat testing and referrals, it seems like the focus gets lost in the Ping-ponging between doctors.
Get your info from the last few years together especially with the info grouped to show attacks and the neuro abnormalities that were found during those times. Point out the clear cut recurrent attacks. Mention how long it has been since the MRIs of the brain and spine, and even the LP. Ask him to look at it all with a fresh eye. Ask the question, "with all of this, if I don't have MS, then what is it I have?" Press for a more concrete answer.
With your reluctance to engage a neurologist, you might take advantage of the ploy that a family friend who is a physician with MS, feels that you have probably fulfilled the McDonald Criteria. If need be I would email you something to that effect. This puts a little pressure on him to justify his failure to move toward a better diagnosis. When the know another doctor is watching, they tend (unfortunately) to be more aggressive. Using this ploy you can still be blameless for pressing him. Also, a member of your family can go along with you with the same concerns.
If all of this yields no progress beyond CNS Demeylinating Disease - then I would strongly suggest you move on if you want answers.
We'll be here helping you refine the things that might help all the way.
Quix
Get your info from the last few years together especially with the info grouped to show attacks and the neuro abnormalities that were found during those times. Point out the clear cut recurrent attacks. Mention how long it has been since the MRIs of the brain and spine, and even the LP. Ask him to look at it all with a fresh eye. Ask the question, "with all of this, if I don't have MS, then what is it I have?" Press for a more concrete answer.
With your reluctance to engage a neurologist, you might take advantage of the ploy that a family friend who is a physician with MS, feels that you have probably fulfilled the McDonald Criteria. If need be I would email you something to that effect. This puts a little pressure on him to justify his failure to move toward a better diagnosis. When the know another doctor is watching, they tend (unfortunately) to be more aggressive. Using this ploy you can still be blameless for pressing him. Also, a member of your family can go along with you with the same concerns.
If all of this yields no progress beyond CNS Demeylinating Disease - then I would strongly suggest you move on if you want answers.
We'll be here helping you refine the things that might help all the way.
Quix
I'm sorry your neuros aren't taking your MRI seriously. It does seem like there are a lot of lazy docs who don't want to really look at the less than "texbook" cases. It's a shame that we have to look so hard for those who can.
Latte--I'm 40 (just turned 40), and six months ago, my MRI showed several white matter lesions, including 3 that were > 3 mm, and I've been told by two neuros that that's "totally normal." It doesn't *feel* normal to me to have spots on my brain (I have 10+ total, no hx of migraines), but...apparently, most neuros don't feel the way yours does about age and WMLs.
You should push. You've have serious quality-of-life impairments from this, and regardless of what some nutjob neuro has told you, you *know* these things are real and you *know* that they are something that should be treated, so keep going until you get what's necessary for your best well being.
Doctors (no offense, Quix, you're obviously an exception) really work the algorithms, and in many cases, they're linear-thinking mechanics, not lateral thinkers who move easily outside the box on a patient-by-patient basis. Sometimes, those "best" doctors are the best only because they're really good with the straightforward cases. With these equivocal cases (although honestly, yours doesn't sound equivocal in the slightest), our job is to find the MD who can look from side to side and see things and not just look at the textbook.
Also, any doctor who dismisses you with a "seek therapy" response without ensuring that you do so is not serious; s/he is simply butt lazy.
Bio
You should push. You've have serious quality-of-life impairments from this, and regardless of what some nutjob neuro has told you, you *know* these things are real and you *know* that they are something that should be treated, so keep going until you get what's necessary for your best well being.
Doctors (no offense, Quix, you're obviously an exception) really work the algorithms, and in many cases, they're linear-thinking mechanics, not lateral thinkers who move easily outside the box on a patient-by-patient basis. Sometimes, those "best" doctors are the best only because they're really good with the straightforward cases. With these equivocal cases (although honestly, yours doesn't sound equivocal in the slightest), our job is to find the MD who can look from side to side and see things and not just look at the textbook.
Also, any doctor who dismisses you with a "seek therapy" response without ensuring that you do so is not serious; s/he is simply butt lazy.
Bio
Oh sllowe, you remined me of somthing! I forgot to mention a couple of things my neuro said.
One was in regard to the CCF neuro. He said that unfortunately some neuros dismiss patients who are organized and prepared. He said that was wrong. He and the neuropsych I saw actually have both told me to disregard that guy, but his "opinion" is still lurking in my chart and in my mind!!
The other thing he said at one appt was actually said to a med student and I meant to put it in above where I was talking about that. He showed him my MRI and said that white matter lesions in someone my age (I'm in my 30's) are NEVER normal. He said that doctors who tell patients that it is a normal variant are just essentially blowing that patient off either because they are ignorant or too lazy to find out why their young patient has white matter lesions if they aren't typical.
This is important for people who have been blown off but have lesions. I'm thinking of people who are told they are UBO's in particular because he actually mentioned that phrase and said it was a cop out. He said something about UBO's being "unexplained" because no one has taken the time to try to explain them.
One was in regard to the CCF neuro. He said that unfortunately some neuros dismiss patients who are organized and prepared. He said that was wrong. He and the neuropsych I saw actually have both told me to disregard that guy, but his "opinion" is still lurking in my chart and in my mind!!
The other thing he said at one appt was actually said to a med student and I meant to put it in above where I was talking about that. He showed him my MRI and said that white matter lesions in someone my age (I'm in my 30's) are NEVER normal. He said that doctors who tell patients that it is a normal variant are just essentially blowing that patient off either because they are ignorant or too lazy to find out why their young patient has white matter lesions if they aren't typical.
This is important for people who have been blown off but have lesions. I'm thinking of people who are told they are UBO's in particular because he actually mentioned that phrase and said it was a cop out. He said something about UBO's being "unexplained" because no one has taken the time to try to explain them.
No, it's not too long, it's absolutely perfect! It's not emotional, it's very logical, and it's your life for the past 8 years.
This IS your draft timeline. It's what you are going to re-work so you can sit back down with your Neuro. Like you said, he's not dismissive. To me, unless I'm reading this wrong. He does believe you have MS.
This leads me back to "treatment." It's time Latte, it's time to discuss treatment with your Dr, the MS needs to be treated, not just your symptoms.
Bury, or burn that CCF report. It's over. You are not being treated by those Docs -- just went for an opinion. And, that is exactly what you got. Your current Doc does not seem affected by what they say at all. So, to me, that chapter in your life is over.
I know it's hard. But, please, please leave that appt behind you. Don't mention any of what that Doc said to your current Doc.
You can absolutely do this. You are worthy of answers, you are worthy of a bright future. We are here, and will carry your confidence for you while you gather this info together in a precise manner. You don't have to do this alone. We have timeline "pros" on this board. And I know they would be more than happy to help.
ttys,
SL
This IS your draft timeline. It's what you are going to re-work so you can sit back down with your Neuro. Like you said, he's not dismissive. To me, unless I'm reading this wrong. He does believe you have MS.
This leads me back to "treatment." It's time Latte, it's time to discuss treatment with your Dr, the MS needs to be treated, not just your symptoms.
Bury, or burn that CCF report. It's over. You are not being treated by those Docs -- just went for an opinion. And, that is exactly what you got. Your current Doc does not seem affected by what they say at all. So, to me, that chapter in your life is over.
I know it's hard. But, please, please leave that appt behind you. Don't mention any of what that Doc said to your current Doc.
You can absolutely do this. You are worthy of answers, you are worthy of a bright future. We are here, and will carry your confidence for you while you gather this info together in a precise manner. You don't have to do this alone. We have timeline "pros" on this board. And I know they would be more than happy to help.
ttys,
SL
Nope I'm not overwhelmed by you guys!
I'm not sure where my head is. I'm kind of excited at the thought that there could be answers for me. I really do want to push, but I'm so terrified.
Quix made points about fulfilling the criteria that I had never heard of before. I guess I'm really blown away. I've been doubting myself and my sanity for so long that I don't know how to believe in what my body has been telling me.
About the clear attacks, at least two clear and different attacks (2004 & 2005) have been documented by two different neuros. If we go back to 2000 when my son was born, that was another attack documented by a PCP, but we didn't know what was going on. That was explained away as post viral syndrome. I've had other small flares that I haven't even gone in to see anyone about since then.
I've had different neuro signs come and go. The first neuro I ever saw documented weakness in the hip flexor on the right, grossly positive Rhomberg, ataxic gait, and clonus in my ankles as well as general hyperreflexia.
Later that year, I went to the opth because I was having vision problems. He explained to me after taking one look in my eyes that my eye problems were actually brain problems. He said I had torsional nystagmus which is always caused by a CNS problem. He said other forms of nystagmus can be cause by ear problems, but not the torsional kind. Even the CCF neuro saw the nystagmus and documented saccadic pursuits. The nystagmus seems to have gone away over time. It was no longer visible on exam last year anyway.
When I had the really bad flare with the walking problems in February of 2005, my normally overactive reflexes got even more so. When the neuro checked the reflex at the knee, my leg would jump out and bounce in mid-air for awhile before calming down (documented as unsustained clonus). That response persisted for awhile and then calmed back down to just endangering the tester if he couldn't move out of the way fast enough.
I've pretty much always had the positive Rhomberg since this started. Babinski has pretty much always been negative, but the CCF neuro listed it as equivocal bilaterally. My current neuro does some strange neuro exam stuff sometimes that other neuros have never done. He seems to vary his neuro exam to reflect things he is seeing, so it is never the same twice. He often checks for a jaw jerk reflex on me and that is usually positive. One time, he had me go from my nose to his finger back and forth and then had me close my eyes and try to find his finger and I couldn't do that.
He usually has a fellow, a resident or a med student and usually explains a lot of stuff to them about how strange I am. He showed one my MRI and said that "her lesions aren't typical for MS, but she sure has a bunch of them".
Looking back, I really think one of my sticking points is that I have improved so much since he saw me in Feb of 2005. I looked so bad then that he wanted me to consider disability and power mobility. Now, I can walk without a cane again. I think he forgets all the stuff from before and sees someone who isn't that bad.
In the summer of 2006, he was pretty impressed with the improvement I had between the IVSM and the Baclofen. He told me that he felt that there was quite a bit of permanent damage and that improvment was good, but that I would never see "normal" again.
Then, the next time I saw him was later that year when the spasticity got so bad that I was waking up with my knee stuck in a bent position. He agreed that my neuro exam showed signs of the spasticity and this is when he increased the Baclofen to 80 mg / day. However, he thought that my pattern of weakness was suspicious so he sent me to have conversion disorder ruled out! It felt like he forgot everything else he had seen over the last 2 years.
I went to the neuropsychologist for extensive therapy for the next 8 months and she completely ruled out a conversion disorder, but I still feel like that is in the back of his mind even though he says he accepted her opinion. I wonder if it is my issues because of my experience with the CCF neuro or if he really is different with me now.
He was totally professional about his concern and was not dismissive of me. Even when he wanted me to see a psychologist, he still upped the Baclofen, kept me on the schedule for IVSM, and sent me for a new brain MRI.
I've wondered for awhile if I just need to sit down with him and say let's go back to the beginning and review everything again to see if we have missed something. It's just so darn hard because he is hard to get an appt with. He really tries to take his time with patients and is always way behind because of that, so I am sensitive to demanding more of his time.
He is the MS neuro that people talk highly of at support groups. There are very few bad reports that I have heard. That is why I am so worried about pushing too hard and alienating him, but perhaps he has lost sight of what is going on with me and maybe I should redirect him a little. I don't know.
Brief Timeline of Tests:
June 2004 - Brain / C-Spine MRI on 1.5T - multiple subcortical lesions (c-spine clear)
July 2004 - Balance Testing by vestibular specialist - results showed central problems (no vestibular problems)
August 2004 - LP - clear
August 2004 - SSEP Arms only / BAER / VEP - all normal
August 2004 - T-Spine MRI - clear
December 2004 - Repeat Brain MRI (1.5T) - no significant change
December 2004 - Opthalmologist found torsional nystagmus
March 2005 - CT chest / abdomen / pelvis to rule out various cancers and mammogram to rule out breast cancer along with bloodwork to rule out antibodies for paneoplastic syndrome
March 2005 - EMG to rule out ALS and other neuromuscular diseases - normal EMG
Sept 2005 - Repeat Brain MRI - no significant change
Since 2005, I've really only had neuro exams, bloodwork for more rare mimics, and a couple of repeat brain MRI's (don't know what strength that machine is) which also showed "no significant change". I didn't include a list of all the mimics that they have ruled out, but suffice it to say that I have had all of the standard mimics ruled out plus many more that most people never get tested for.
My current neuro's plan seems to be to monitor me for changes, manage my sx, and throw out the occassional test for weird stuff as he thinks of it.
Sorry this was so long. I figured it was the best way to get all the questions answered so that you all can know where I stand testing wise, etc.
I'm not sure where my head is. I'm kind of excited at the thought that there could be answers for me. I really do want to push, but I'm so terrified.
Quix made points about fulfilling the criteria that I had never heard of before. I guess I'm really blown away. I've been doubting myself and my sanity for so long that I don't know how to believe in what my body has been telling me.
About the clear attacks, at least two clear and different attacks (2004 & 2005) have been documented by two different neuros. If we go back to 2000 when my son was born, that was another attack documented by a PCP, but we didn't know what was going on. That was explained away as post viral syndrome. I've had other small flares that I haven't even gone in to see anyone about since then.
I've had different neuro signs come and go. The first neuro I ever saw documented weakness in the hip flexor on the right, grossly positive Rhomberg, ataxic gait, and clonus in my ankles as well as general hyperreflexia.
Later that year, I went to the opth because I was having vision problems. He explained to me after taking one look in my eyes that my eye problems were actually brain problems. He said I had torsional nystagmus which is always caused by a CNS problem. He said other forms of nystagmus can be cause by ear problems, but not the torsional kind. Even the CCF neuro saw the nystagmus and documented saccadic pursuits. The nystagmus seems to have gone away over time. It was no longer visible on exam last year anyway.
When I had the really bad flare with the walking problems in February of 2005, my normally overactive reflexes got even more so. When the neuro checked the reflex at the knee, my leg would jump out and bounce in mid-air for awhile before calming down (documented as unsustained clonus). That response persisted for awhile and then calmed back down to just endangering the tester if he couldn't move out of the way fast enough.
I've pretty much always had the positive Rhomberg since this started. Babinski has pretty much always been negative, but the CCF neuro listed it as equivocal bilaterally. My current neuro does some strange neuro exam stuff sometimes that other neuros have never done. He seems to vary his neuro exam to reflect things he is seeing, so it is never the same twice. He often checks for a jaw jerk reflex on me and that is usually positive. One time, he had me go from my nose to his finger back and forth and then had me close my eyes and try to find his finger and I couldn't do that.
He usually has a fellow, a resident or a med student and usually explains a lot of stuff to them about how strange I am. He showed one my MRI and said that "her lesions aren't typical for MS, but she sure has a bunch of them".
Looking back, I really think one of my sticking points is that I have improved so much since he saw me in Feb of 2005. I looked so bad then that he wanted me to consider disability and power mobility. Now, I can walk without a cane again. I think he forgets all the stuff from before and sees someone who isn't that bad.
In the summer of 2006, he was pretty impressed with the improvement I had between the IVSM and the Baclofen. He told me that he felt that there was quite a bit of permanent damage and that improvment was good, but that I would never see "normal" again.
Then, the next time I saw him was later that year when the spasticity got so bad that I was waking up with my knee stuck in a bent position. He agreed that my neuro exam showed signs of the spasticity and this is when he increased the Baclofen to 80 mg / day. However, he thought that my pattern of weakness was suspicious so he sent me to have conversion disorder ruled out! It felt like he forgot everything else he had seen over the last 2 years.
I went to the neuropsychologist for extensive therapy for the next 8 months and she completely ruled out a conversion disorder, but I still feel like that is in the back of his mind even though he says he accepted her opinion. I wonder if it is my issues because of my experience with the CCF neuro or if he really is different with me now.
He was totally professional about his concern and was not dismissive of me. Even when he wanted me to see a psychologist, he still upped the Baclofen, kept me on the schedule for IVSM, and sent me for a new brain MRI.
I've wondered for awhile if I just need to sit down with him and say let's go back to the beginning and review everything again to see if we have missed something. It's just so darn hard because he is hard to get an appt with. He really tries to take his time with patients and is always way behind because of that, so I am sensitive to demanding more of his time.
He is the MS neuro that people talk highly of at support groups. There are very few bad reports that I have heard. That is why I am so worried about pushing too hard and alienating him, but perhaps he has lost sight of what is going on with me and maybe I should redirect him a little. I don't know.
Brief Timeline of Tests:
June 2004 - Brain / C-Spine MRI on 1.5T - multiple subcortical lesions (c-spine clear)
July 2004 - Balance Testing by vestibular specialist - results showed central problems (no vestibular problems)
August 2004 - LP - clear
August 2004 - SSEP Arms only / BAER / VEP - all normal
August 2004 - T-Spine MRI - clear
December 2004 - Repeat Brain MRI (1.5T) - no significant change
December 2004 - Opthalmologist found torsional nystagmus
March 2005 - CT chest / abdomen / pelvis to rule out various cancers and mammogram to rule out breast cancer along with bloodwork to rule out antibodies for paneoplastic syndrome
March 2005 - EMG to rule out ALS and other neuromuscular diseases - normal EMG
Sept 2005 - Repeat Brain MRI - no significant change
Since 2005, I've really only had neuro exams, bloodwork for more rare mimics, and a couple of repeat brain MRI's (don't know what strength that machine is) which also showed "no significant change". I didn't include a list of all the mimics that they have ruled out, but suffice it to say that I have had all of the standard mimics ruled out plus many more that most people never get tested for.
My current neuro's plan seems to be to monitor me for changes, manage my sx, and throw out the occassional test for weird stuff as he thinks of it.
Sorry this was so long. I figured it was the best way to get all the questions answered so that you all can know where I stand testing wise, etc.
Morning Latte,
How are you feeling? Before providing more comments to your post (I have a couple thoughts to add), I wanted to see where your head was at first.
Whatcha thinking? We didn't overwhelm you did we?
Pop in if you can,
-SL
How are you feeling? Before providing more comments to your post (I have a couple thoughts to add), I wanted to see where your head was at first.
Whatcha thinking? We didn't overwhelm you did we?
Pop in if you can,
-SL
Thank you for saying that! I appreciate it. That's how we can all help. You never know that something you are saying to one person may actually help another.
Quix :))
Quix :))
I thank you for your cooment to Holly. I am going through a second time of a lot of horrible symptoms and they seem to get worse by the day. My last post listing them all doesn't even cover them. I thank you because I to have felt like giving up because no one seem to know what it is. I also that you for answering a question I previously posted in your comment to Holly that it is important to get new MRI's. Mine was done two years ago without contrast or proper technique. Thanks this comment has meant a lot to me.
Tahiri
Tahiri
I bumped the Criteria up for you to see and apply to your situation. I'll help you do it after you study them a little.
Q
Q
Wow, I have so much to say. First, I'm sorry that I didn't comment earlier. I invited you to post and then took a break from posting for a few days.
Second, I honestly feel that your current neuro is doing you a disservice. Yes, he is treating your symptoms, and that is certainly more than a lot of us have had without a diagnosis. But, "CNS Demyelinating Disease" is more a description than a diagnosis. It is a term being popularized, as far as I can tell, by the same guy out of the Mayo Clinic that is pushing to give fewer people the MS meds. "Part" of his reasoning seems sound to me. And that is that there is a spectrum of CNS Demyelinating Diseases, from very mild to fatal within days (Marburg variant of MS). That is the only part. Your neuro owes it to you to commit to something about whether you have MS. There is no known middle ground, no known "CNS Demyelinating Disease" that looks just like MS, but is a little short on the MRI count.
The forum here knows that I despise "Lesion Counters." It's the lazy, dull and easy way to look for MS.
But, we are starting to see a whole raft of people who do not quite fulfill the McDonald Criteria - so they are atypical. Yet, their histories and neuro exams sceam MS and the mimics have been ruled out. More and more they are just called "CNS Demyelinating Disease" And they are left to languish without a diagnosis and without the possibility of slowing the disease down. A good, smart and "confident" neurologist is willing to step outside the Criteria and lend more weight (as is suggested by the Criteria) to the person's history and physical findings. I did not fulfill the criteria, but my neuro just look at the whole picture.
If your spasticity requires Baclofen to allow you to walk unassisted, then you do NOT have a benign course and the overwhelming consensus among MS Specialists is that people with RRMS (which you have by history, I also disagree with PPMS. You might be entering SPMS) or people with a 90% chance of having MS should be treated or at least offered the DMDs.
I have some questions. I suspect your workup was done some time ago. If the LP was done over two years ago, chances are that the technique that was used to look for O-Bands was the old one and that only 70-80% would have been positive for them. The technique changed in most, byt not all, labs a couple years ago. If done now, the numbers are closer to 96% that it would be positive. That still leaves 1 in 25 that will be negative (the atypical MS).
The LP tends to become more abnormal as the disease duration increases.
My belief is that the good neuro should be willing to put himself/herself out there for that 1 in 25 or the atypical patient. Otherwise, General Internists would be able to diagnose MS.
Do you have any spinal cord lesions? Some people (and I am almost one of them) only have lesions in the cord. Also, IMO the only good way to look for spinal lesions is on a higher resolution MRI, such as a 3 Tesla unit.
MS lesions can be subcortical. They don't have to be periventricular - It's not a rule! And they can be round or oval, with more ovalish being the more common.
It is so unfortunate that you were so devastated by the CCF neuro. Because arrogance is so common in that specialty that many of us have had to make our way through several arrogant, dismissive or defective doc's before someone would really listen to us. It's that fear that makes you afraid you will alieneate your current neuro if you rock the boat for a diagnosis. You might, but, here in the US there are tons of neuos and many of them are competent and compassionate. We are somehow taught that "we owe" these doctors something, when it is quite the reverse. They are our paid consultants. If they are not doing their jobs, then we can kick them to the curb. We can do it nicely, but we are the ones who can and need to advocate for ourselves.
We should not give up so much of our self-esteem to the cruel remarks of a physician. The problem is that we were taught to revere them. We are at our most vulnerable when ill and when we present to them for help. Remember, the doctor at CCF was being mean to you. You are a better person thatn he and he needs to be forgotten. AND he actually thought MS was a distinct possibility.
The proper treatment of a patient with suspected MS, but in whom there is not "enough evidence" (and I am not sure you do not fit into this category) is periodic repetition of the MRIs (brain and spine) AND the LP, SSEPs, AND the NEURO exam!!
MS is NOT an MRI diagnosis! It is made by looking at the patients history and physical. If you have had two or more attacks/relapses/exacerbations and had different neurological abnormalities during at least two of those attacks, then YOU HAVE ENOUGH EVIDENCE TO QUALIFY FOR A DIAGNOSIS OF MS NO MATTER WHAT THE MRI LOOKS LIKE. The MRI is recommended for "further evidence" or as baseline.
If you have had two clear attacks and two neuro abnormalities noted at two different times, that is all you need. The LP does not need to be positive for a diagnosis to be made.
The fact that you have ANY brain lesions that look like plaques, but are round and subcortical, should be enough to qualify you for diagnosis.
One of the places you can check for good (compassionate, smart, proactive, good listeners) neurologists is to attend an MS support group. Hang around and ask those who really like and respect their neuro, to come tell you. You will get your earful of who is an arse and who is great and smart. When the same names keep popping up you have some to check out.
For example, I would tell anyone that my neurologist is smart beyond belief, intense, thorough, but has an ego as large as his office building. He is not for the faint of heart and beware if you get him angry - apparently easy to do. Yet, his colleague, in the practice is known region-wide for his compassionate care and infinite regard for the patient's well-being.
Perhaps your relationship is good enough with Neuro #2 to get him off the fence. One of the ways is to see if you actually do fulfill the McDonald Criteria. Then you go in and say that a family friend who is a doctor (that would be me - I'm sure your family would like me just fine) has talked to you and explained how you actually do qualify under the criteria. Blame the information on someone else. And ask again to be evaluated. Repeat spinal films on a 3T (You really need new spine films), a new LP if it has been some years, whatever.
If you would go back and think about the different episodes you have had and what the different doctors saw on your exam during two or more of them. When did your hyperactive reflexes occur? When the Babinski or the Romberg appear? Have your had ataxia or Nystagmus.
Well, lets try to tease out whether you already qualify for the diagnosis. Then we can formulate some ideas for seeking more information. At least you deserve another spinal cord MRI preferably of the cervical AND thoracic regions.
I know it was late, but I hope this has been helpful. I'm hoping some of the other people here will stop in and tell you some of their stories about moving beyond the paralysis of fear that another doctor will speak to you harshly. We actually roast these b*st*rds every Friday during our bonfires.
We have a Greek House here called Hypo Gamma Chondria for all the people who have been told by their neuros that they are making too much of their illnesses.
((((HIGS)))) Quix
Second, I honestly feel that your current neuro is doing you a disservice. Yes, he is treating your symptoms, and that is certainly more than a lot of us have had without a diagnosis. But, "CNS Demyelinating Disease" is more a description than a diagnosis. It is a term being popularized, as far as I can tell, by the same guy out of the Mayo Clinic that is pushing to give fewer people the MS meds. "Part" of his reasoning seems sound to me. And that is that there is a spectrum of CNS Demyelinating Diseases, from very mild to fatal within days (Marburg variant of MS). That is the only part. Your neuro owes it to you to commit to something about whether you have MS. There is no known middle ground, no known "CNS Demyelinating Disease" that looks just like MS, but is a little short on the MRI count.
The forum here knows that I despise "Lesion Counters." It's the lazy, dull and easy way to look for MS.
But, we are starting to see a whole raft of people who do not quite fulfill the McDonald Criteria - so they are atypical. Yet, their histories and neuro exams sceam MS and the mimics have been ruled out. More and more they are just called "CNS Demyelinating Disease" And they are left to languish without a diagnosis and without the possibility of slowing the disease down. A good, smart and "confident" neurologist is willing to step outside the Criteria and lend more weight (as is suggested by the Criteria) to the person's history and physical findings. I did not fulfill the criteria, but my neuro just look at the whole picture.
If your spasticity requires Baclofen to allow you to walk unassisted, then you do NOT have a benign course and the overwhelming consensus among MS Specialists is that people with RRMS (which you have by history, I also disagree with PPMS. You might be entering SPMS) or people with a 90% chance of having MS should be treated or at least offered the DMDs.
I have some questions. I suspect your workup was done some time ago. If the LP was done over two years ago, chances are that the technique that was used to look for O-Bands was the old one and that only 70-80% would have been positive for them. The technique changed in most, byt not all, labs a couple years ago. If done now, the numbers are closer to 96% that it would be positive. That still leaves 1 in 25 that will be negative (the atypical MS).
The LP tends to become more abnormal as the disease duration increases.
My belief is that the good neuro should be willing to put himself/herself out there for that 1 in 25 or the atypical patient. Otherwise, General Internists would be able to diagnose MS.
Do you have any spinal cord lesions? Some people (and I am almost one of them) only have lesions in the cord. Also, IMO the only good way to look for spinal lesions is on a higher resolution MRI, such as a 3 Tesla unit.
MS lesions can be subcortical. They don't have to be periventricular - It's not a rule! And they can be round or oval, with more ovalish being the more common.
It is so unfortunate that you were so devastated by the CCF neuro. Because arrogance is so common in that specialty that many of us have had to make our way through several arrogant, dismissive or defective doc's before someone would really listen to us. It's that fear that makes you afraid you will alieneate your current neuro if you rock the boat for a diagnosis. You might, but, here in the US there are tons of neuos and many of them are competent and compassionate. We are somehow taught that "we owe" these doctors something, when it is quite the reverse. They are our paid consultants. If they are not doing their jobs, then we can kick them to the curb. We can do it nicely, but we are the ones who can and need to advocate for ourselves.
We should not give up so much of our self-esteem to the cruel remarks of a physician. The problem is that we were taught to revere them. We are at our most vulnerable when ill and when we present to them for help. Remember, the doctor at CCF was being mean to you. You are a better person thatn he and he needs to be forgotten. AND he actually thought MS was a distinct possibility.
The proper treatment of a patient with suspected MS, but in whom there is not "enough evidence" (and I am not sure you do not fit into this category) is periodic repetition of the MRIs (brain and spine) AND the LP, SSEPs, AND the NEURO exam!!
MS is NOT an MRI diagnosis! It is made by looking at the patients history and physical. If you have had two or more attacks/relapses/exacerbations and had different neurological abnormalities during at least two of those attacks, then YOU HAVE ENOUGH EVIDENCE TO QUALIFY FOR A DIAGNOSIS OF MS NO MATTER WHAT THE MRI LOOKS LIKE. The MRI is recommended for "further evidence" or as baseline.
If you have had two clear attacks and two neuro abnormalities noted at two different times, that is all you need. The LP does not need to be positive for a diagnosis to be made.
The fact that you have ANY brain lesions that look like plaques, but are round and subcortical, should be enough to qualify you for diagnosis.
One of the places you can check for good (compassionate, smart, proactive, good listeners) neurologists is to attend an MS support group. Hang around and ask those who really like and respect their neuro, to come tell you. You will get your earful of who is an arse and who is great and smart. When the same names keep popping up you have some to check out.
For example, I would tell anyone that my neurologist is smart beyond belief, intense, thorough, but has an ego as large as his office building. He is not for the faint of heart and beware if you get him angry - apparently easy to do. Yet, his colleague, in the practice is known region-wide for his compassionate care and infinite regard for the patient's well-being.
Perhaps your relationship is good enough with Neuro #2 to get him off the fence. One of the ways is to see if you actually do fulfill the McDonald Criteria. Then you go in and say that a family friend who is a doctor (that would be me - I'm sure your family would like me just fine) has talked to you and explained how you actually do qualify under the criteria. Blame the information on someone else. And ask again to be evaluated. Repeat spinal films on a 3T (You really need new spine films), a new LP if it has been some years, whatever.
If you would go back and think about the different episodes you have had and what the different doctors saw on your exam during two or more of them. When did your hyperactive reflexes occur? When the Babinski or the Romberg appear? Have your had ataxia or Nystagmus.
Well, lets try to tease out whether you already qualify for the diagnosis. Then we can formulate some ideas for seeking more information. At least you deserve another spinal cord MRI preferably of the cervical AND thoracic regions.
I know it was late, but I hope this has been helpful. I'm hoping some of the other people here will stop in and tell you some of their stories about moving beyond the paralysis of fear that another doctor will speak to you harshly. We actually roast these b*st*rds every Friday during our bonfires.
We have a Greek House here called Hypo Gamma Chondria for all the people who have been told by their neuros that they are making too much of their illnesses.
((((HIGS)))) Quix
Thank you everyone. I do feel welcome here.
Actually, of the 4 neuros I have seen, 3 of them are MS Specialists.
The first neuro I ever saw was pretty convinced that my MRI would be loaded with lesions based on my neuro exam. He was actually pretty surprised that it wasn't that bad. He did the LP and EVP's and when they were normal and he ruled out a bunch of mimics, he gave up and sent me over to MS neuro #1.
MS neuro #1 looked at my MRI's and said maybe early or borderline MS. I had a lot of cerebellar sx at the time, so he started to focus on cerebellitis and ran a ton more bloodwork for mimics. He was puzzled, so he sent me across town to MS neuro #2 for another opinion. He also did a five day steroid treatment to try to give me some relief. It actually helped quite a lot.
MS neuro #2 said atypical MS, but also wanted to rule out a few more bizarre mimics. So, he sent me back to the other guy who ran that testing (paraneoplastic syndrome, Lambert Eaton, CADASIL, Stiffperson, among others).
Sometime between the appt with MS neuro #2 and going back to #1, my walking suddenly and quite dramatically deteriorated. I could hardly walk even with a cane. I walked with a very bad limp, dragging my right leg and could only move very slowly and had to stop frequently. So, by the time I got back in there, he was stunned at how much worse I was. That bought me my next 5 day steroid treatment which helped but never quite restored all of my walking function.
At this point, he thought I might actually be PPMS instead of relapsing. He wanted yet another opinion on this, so he sent me up to Cleveland to the big expert! Well, you all know from above that wasn't a good idea after all. I never ended up going back to my original specialist ever. I was so upset by the doc in Cleveland that I cancelled the follow up appt and never went back.
It wasn't until my therapist convinced me that I needed to be followed by a neuro that I scheduled a new appt with MS neuro #2 again. I really preferred him over my original guy anyway. So, I went to see him and he still held to the fact that I don't have a typical case of MS, but thought that I would benefit from pulsed IVSM. He also disagreed about the PPMS, he firmly felt that whatever this is, it is a relapsing thing.
So, we started doing the IVSM every few months. He also got me on Provigil and Baclofen. I had to stop the pulsed IVSM last year after I started to develop osteopenia, but I still think it was worth it because I improved so much.
The combination of all of that gave me most of my life back. After the last increase of Baclofen, I can successfully walk without a cane again becasue I'm not fighting the spasticity in my legs as much anymore. I can walk faster and farther with the cane, but I'm just too happy to be able to walk without it.
So, there is a little more history to fill in some blanks.
Actually, of the 4 neuros I have seen, 3 of them are MS Specialists.
The first neuro I ever saw was pretty convinced that my MRI would be loaded with lesions based on my neuro exam. He was actually pretty surprised that it wasn't that bad. He did the LP and EVP's and when they were normal and he ruled out a bunch of mimics, he gave up and sent me over to MS neuro #1.
MS neuro #1 looked at my MRI's and said maybe early or borderline MS. I had a lot of cerebellar sx at the time, so he started to focus on cerebellitis and ran a ton more bloodwork for mimics. He was puzzled, so he sent me across town to MS neuro #2 for another opinion. He also did a five day steroid treatment to try to give me some relief. It actually helped quite a lot.
MS neuro #2 said atypical MS, but also wanted to rule out a few more bizarre mimics. So, he sent me back to the other guy who ran that testing (paraneoplastic syndrome, Lambert Eaton, CADASIL, Stiffperson, among others).
Sometime between the appt with MS neuro #2 and going back to #1, my walking suddenly and quite dramatically deteriorated. I could hardly walk even with a cane. I walked with a very bad limp, dragging my right leg and could only move very slowly and had to stop frequently. So, by the time I got back in there, he was stunned at how much worse I was. That bought me my next 5 day steroid treatment which helped but never quite restored all of my walking function.
At this point, he thought I might actually be PPMS instead of relapsing. He wanted yet another opinion on this, so he sent me up to Cleveland to the big expert! Well, you all know from above that wasn't a good idea after all. I never ended up going back to my original specialist ever. I was so upset by the doc in Cleveland that I cancelled the follow up appt and never went back.
It wasn't until my therapist convinced me that I needed to be followed by a neuro that I scheduled a new appt with MS neuro #2 again. I really preferred him over my original guy anyway. So, I went to see him and he still held to the fact that I don't have a typical case of MS, but thought that I would benefit from pulsed IVSM. He also disagreed about the PPMS, he firmly felt that whatever this is, it is a relapsing thing.
So, we started doing the IVSM every few months. He also got me on Provigil and Baclofen. I had to stop the pulsed IVSM last year after I started to develop osteopenia, but I still think it was worth it because I improved so much.
The combination of all of that gave me most of my life back. After the last increase of Baclofen, I can successfully walk without a cane again becasue I'm not fighting the spasticity in my legs as much anymore. I can walk faster and farther with the cane, but I'm just too happy to be able to walk without it.
So, there is a little more history to fill in some blanks.
Welcome Latte,
Thank you so much for joining us. You do belong here. Wow, 8 years w/no dx. Really shouldn't be.
Ok, just to sort this out. You have 1 Recognized Neuro stating that you will not find out what is going on, but did not offer any possibles or further testing?
One of the 4 is an MS Specialist that basically says you have MS (atypical) or a demyelinating disease? Did he/she offer any names?
I would absolutely start getting together a list of questions for this Doctor. For example, Do I have MS? And, if so, you can state,that the course of the disease has dramatically change in the past decade solely due to "treatment." There are 5 approved treatments (you can visit the health pages for specific info on them).
Latte, I'm so sorry for what you have been going through. I hope the steroids have helped to keep the progression at bay for you.
I'm unsure why an MS Doc would withhold treatment (Oh boy Rena, I hear ya!) it's simply not supported by the studies. The studies say completely the opposite.
We are here for you. Welcome - Welcome, we look forward to helping you map out a course of action, if you so desire.
be well,
SL
Thank you so much for joining us. You do belong here. Wow, 8 years w/no dx. Really shouldn't be.
Ok, just to sort this out. You have 1 Recognized Neuro stating that you will not find out what is going on, but did not offer any possibles or further testing?
One of the 4 is an MS Specialist that basically says you have MS (atypical) or a demyelinating disease? Did he/she offer any names?
I would absolutely start getting together a list of questions for this Doctor. For example, Do I have MS? And, if so, you can state,that the course of the disease has dramatically change in the past decade solely due to "treatment." There are 5 approved treatments (you can visit the health pages for specific info on them).
Latte, I'm so sorry for what you have been going through. I hope the steroids have helped to keep the progression at bay for you.
I'm unsure why an MS Doc would withhold treatment (Oh boy Rena, I hear ya!) it's simply not supported by the studies. The studies say completely the opposite.
We are here for you. Welcome - Welcome, we look forward to helping you map out a course of action, if you so desire.
be well,
SL
hi,welcome to the ms forum where every one here is like cyber family...i am not dx'd either but im hanging in there.....some of the other ones that are more educated in this subject will be along soon....so please take care and welcome again....debj52aka deb
Hang in there. I understand what it feels like to be told that it is nothing and to just forget about it. Remember you know your body the best, if you feel that there is something to it and it is not just nothing keep pushing. Figure out what it is. You may have to go to even more doctors, but don't give up. Trust your instincts.
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