Aa
Guess I'm Back to Limboland?
I don't know why someone can't figure out what is wrong with me? I can't be that complicated a case.....or at least I don't think so.
I was dx with MS by an optho due to having ON. Neuro at that time agreed I had MS and sent me for an lp to confirm. When it was negative, he took the MS dx away and said he didn't know what I had. We'd have to wait and see what happens.
Went for a 2nd opinion and was told that yes, I did indeed have MS, had probably had it for 20 years or so. I started on a dmd right away. He ended up leaving his practice so I went to a 3rd neuro.
Now this neuro says I do not have clinically proven MS. That I have probable/possible MS. He doesn't agree that I had ON at all (even though I still have a central scotoma for over a year now) and since my mri was stable. He said everything else was ruled out but that he wanted to wait and see and if things were still stable at 5 years out then I definitely don't have MS.
Now I was on a dmd for several months and am currently on ldn. I thought with MS that a stable mri was the goal? Am I missing something here?
Don't get me wrong, as I really like this doctor. He sits down and really listens to you and he went through my last (not current because I just gave him the films) mri and medical files in detail, so I trust his judgement, I just don't understand why the dx keeps changing. I mean it is obvious to other people that something is wrong and they ask questions. Even with a concrete dx of something (MS or otherwise) their is no cure, but it is nice to have some idea of what is wrong with you and why you feel bad.
Sorry for the rant and thanks for reading.
I was dx with MS by an optho due to having ON. Neuro at that time agreed I had MS and sent me for an lp to confirm. When it was negative, he took the MS dx away and said he didn't know what I had. We'd have to wait and see what happens.
Went for a 2nd opinion and was told that yes, I did indeed have MS, had probably had it for 20 years or so. I started on a dmd right away. He ended up leaving his practice so I went to a 3rd neuro.
Now this neuro says I do not have clinically proven MS. That I have probable/possible MS. He doesn't agree that I had ON at all (even though I still have a central scotoma for over a year now) and since my mri was stable. He said everything else was ruled out but that he wanted to wait and see and if things were still stable at 5 years out then I definitely don't have MS.
Now I was on a dmd for several months and am currently on ldn. I thought with MS that a stable mri was the goal? Am I missing something here?
Don't get me wrong, as I really like this doctor. He sits down and really listens to you and he went through my last (not current because I just gave him the films) mri and medical files in detail, so I trust his judgement, I just don't understand why the dx keeps changing. I mean it is obvious to other people that something is wrong and they ask questions. Even with a concrete dx of something (MS or otherwise) their is no cure, but it is nice to have some idea of what is wrong with you and why you feel bad.
Sorry for the rant and thanks for reading.
I am so shocked! Re reading and re reading your posts, how could they discount out MS when really the time frame has not been that long and the MRI has not been on a T3 machine and you are progressing.
Boy no wonder you are confused! Thinking of you, hugs,
UDkas.
Find another neuro
Boy no wonder you are confused! Thinking of you, hugs,
UDkas.
Find another neuro
Last July I had what I think was a flare. I started getting zappy feeling down my spine and I lost vision in one eye along with eye pain. At the same time my tremors got so bad that people were asking if I had Parkinson's.
So I saw my pcp in August '08, who then refered me to a neuro, who then sent me to an optho who ordered an MRI and said I had ON and therefore MS. By this time it was November '08. In December '08 Neuro #1 confirmed the MS dx and sent me for the LP. In January '09 Neuro #1 said the LP was negative and that I didn't have MS. I decided to take my info and get a 2nd opinion.
I finally got into see Neuro #2 in March '09. He went over all of my records (I'd sent copies in earlier), had a long talk about my history that went back a good 20 years of odd off and on symptoms, did a long exam and then stated that while my lesions were not all typical, that I did indeed have MS based on my history, ON, lesion load, exam, symptoms, etc. He even pointed out neurological symptoms that I hadn't even picked up on.
In April I started Beta. It was a nightmare. I've never been so sick in my life. Worse than the flu. It was a living h@ll! By the time I managed to get to the full dose in July (I was determined to stick it out) I had no life at all and my dh said he couldn't bear to give me the shots anymore because I was no longer anything like whom he married. So I quit the meds and called the dr.
Unfortunately, the dr that prescribed the dmd, had left his practice so I had to see neuro #3 around the end of July, who at that time offered the other dmd's and ty. I declined because emotionally I was not ready (and still am not) to go there again. LDN was brought up and agreed upon.
Now it is several months later, I had my follow-up MRI, and now am told that there is a good chance I do not have MS afterall because my MRI was stable. Which I thought was the goal. I still have effects from the last flare and am slowly getting worse regardless of what the MRI says lesion wise. Both MRI's were on a 1T, as well as my neck & spinal ones which to be honest were nothing but a blur. I don't know how anyone could see anything on them.
So I saw my pcp in August '08, who then refered me to a neuro, who then sent me to an optho who ordered an MRI and said I had ON and therefore MS. By this time it was November '08. In December '08 Neuro #1 confirmed the MS dx and sent me for the LP. In January '09 Neuro #1 said the LP was negative and that I didn't have MS. I decided to take my info and get a 2nd opinion.
I finally got into see Neuro #2 in March '09. He went over all of my records (I'd sent copies in earlier), had a long talk about my history that went back a good 20 years of odd off and on symptoms, did a long exam and then stated that while my lesions were not all typical, that I did indeed have MS based on my history, ON, lesion load, exam, symptoms, etc. He even pointed out neurological symptoms that I hadn't even picked up on.
In April I started Beta. It was a nightmare. I've never been so sick in my life. Worse than the flu. It was a living h@ll! By the time I managed to get to the full dose in July (I was determined to stick it out) I had no life at all and my dh said he couldn't bear to give me the shots anymore because I was no longer anything like whom he married. So I quit the meds and called the dr.
Unfortunately, the dr that prescribed the dmd, had left his practice so I had to see neuro #3 around the end of July, who at that time offered the other dmd's and ty. I declined because emotionally I was not ready (and still am not) to go there again. LDN was brought up and agreed upon.
Now it is several months later, I had my follow-up MRI, and now am told that there is a good chance I do not have MS afterall because my MRI was stable. Which I thought was the goal. I still have effects from the last flare and am slowly getting worse regardless of what the MRI says lesion wise. Both MRI's were on a 1T, as well as my neck & spinal ones which to be honest were nothing but a blur. I don't know how anyone could see anything on them.
I'm rereading your post - are you saying this latest MS neuro just changed the name of your disease from MS to probable MS but still offered you the opportunity to be on DMD's?
It sounds like he didn't put you back in limbo, but just played with the semantics. He is the same one who is treating you as if you have MS, right, and prescribed the LDN since you didn't want to be on a DMD? The FDA has approved that approach to people who exhibit signs of MS but don't meet their interpretation of the McDonald criteria.
I'm wondering when you stopped the DMD - was it with neuro #2 or #3? Were your symptoms getting worse on the DMD or did that happen when you stopped because of the side effect?
Sorry I am confused here and trying to get the twists and turns to your journey straight in my brain.
as always,
Lulu
It sounds like he didn't put you back in limbo, but just played with the semantics. He is the same one who is treating you as if you have MS, right, and prescribed the LDN since you didn't want to be on a DMD? The FDA has approved that approach to people who exhibit signs of MS but don't meet their interpretation of the McDonald criteria.
I'm wondering when you stopped the DMD - was it with neuro #2 or #3? Were your symptoms getting worse on the DMD or did that happen when you stopped because of the side effect?
Sorry I am confused here and trying to get the twists and turns to your journey straight in my brain.
as always,
Lulu
You are suffering from doctor's who do not have the clinical expertise or the COURAGE to make a diagnosis when some of the evidence is soft. It has to do with how well they think on their own and interpret the data that is out there.
If you have had 2 or more separated clinical attacks and have evidence of damage in two or more areas of the CNS then the MRI ONLY HAS TO SHOW LESIONS THAT ARE CONSISTENT WITH MS in order to make the diagnosis - of course provided that the mimics have been ruled out. Too many neurologists believe falsly that the MRI must change over some specified length of time, or that there must be a certain lesion load, or the lesions must appear in EXACTLY thee right spots to give a diagnosis.
Neuro #1 and #3 are cowards, especially #3. I say this because #3 had to reject the ON data from the ophtho in order to justify his reasoning. He ignored or blatantly rejected data that didn't conform to the decision he wanted to hand down.
The reality is that MS is not a cut and dried disease. The atypical cases - which you may or may not be - are out there, but it is so much easier for a neuro to only diagnose those with a CLASSIC presentation. That way he never has to think farther than getting you out the door.
The loss of the diagnosis on the basis of the LP is tragic and we see it over and over again. I found a couple really interesting retrospective studies that relooked at the diagnosis of patients in an MS Clinic - patients with a Definite MS diagnosis. They found that about 10% were actually misdiagnosed. Then they did LP on the remaining and found that only 20% had a positive LP. That is 1 in 5 which is not a "rare" percentage.
I have suspected that the data was reallly more like this, but this is the first study to show it. I still say that the studies that show it is only 5% that have a negative LP was low due to the stringent standards that are maintained during a study. Life in the "feal clinical world" is more sloppy. The tests are often run by people with less training in running and interpreting them.
On top of that I maintain that 1 in 20 is not so low that you can just toss them out in the cold. If there are 400,000 people with MS in this country, then 20,000 of them statistically have a negative LP. Guys, that is a whole town's worth!
Taking away the diagnosis when the neuro has no inkling of what the diagnosis really is is, in my opinion, unprofessional. If you really don't think it is MS, then have a reason why, other than it is "atypical." Continue the workup to determine why this patient is suffering. AND be sure you (the neuro) really know what the literature is saying. Be sure you really DO know more than the doctor who gave the diagnosis. Removing a diagnosis without further workup and without a better reason for the patient's problems is sheer ARROGANCE!!
Shocked - I really feel for your dilemma. My only recommendation is to put together all of your data and find a neuro who sees it for what it is. You have had two neurologists that have thought this was MS. One only changed his mind because of the LP (and made an error in doing that). The other moved. When you find another you can present the story that way. 2 out of 3 thought it was MS. And present the data that 5% or more can have a negative LP. Ask for an expanation as to WHY you can be that 1 in 20.
It means more doctor-shopping to find a doctor that will THINK and not react to myths about the diagnosis. The data is out there for them to read.
Only wanting to do the "easy" cases is lazy.
Quix
If you have had 2 or more separated clinical attacks and have evidence of damage in two or more areas of the CNS then the MRI ONLY HAS TO SHOW LESIONS THAT ARE CONSISTENT WITH MS in order to make the diagnosis - of course provided that the mimics have been ruled out. Too many neurologists believe falsly that the MRI must change over some specified length of time, or that there must be a certain lesion load, or the lesions must appear in EXACTLY thee right spots to give a diagnosis.
Neuro #1 and #3 are cowards, especially #3. I say this because #3 had to reject the ON data from the ophtho in order to justify his reasoning. He ignored or blatantly rejected data that didn't conform to the decision he wanted to hand down.
The reality is that MS is not a cut and dried disease. The atypical cases - which you may or may not be - are out there, but it is so much easier for a neuro to only diagnose those with a CLASSIC presentation. That way he never has to think farther than getting you out the door.
The loss of the diagnosis on the basis of the LP is tragic and we see it over and over again. I found a couple really interesting retrospective studies that relooked at the diagnosis of patients in an MS Clinic - patients with a Definite MS diagnosis. They found that about 10% were actually misdiagnosed. Then they did LP on the remaining and found that only 20% had a positive LP. That is 1 in 5 which is not a "rare" percentage.
I have suspected that the data was reallly more like this, but this is the first study to show it. I still say that the studies that show it is only 5% that have a negative LP was low due to the stringent standards that are maintained during a study. Life in the "feal clinical world" is more sloppy. The tests are often run by people with less training in running and interpreting them.
On top of that I maintain that 1 in 20 is not so low that you can just toss them out in the cold. If there are 400,000 people with MS in this country, then 20,000 of them statistically have a negative LP. Guys, that is a whole town's worth!
Taking away the diagnosis when the neuro has no inkling of what the diagnosis really is is, in my opinion, unprofessional. If you really don't think it is MS, then have a reason why, other than it is "atypical." Continue the workup to determine why this patient is suffering. AND be sure you (the neuro) really know what the literature is saying. Be sure you really DO know more than the doctor who gave the diagnosis. Removing a diagnosis without further workup and without a better reason for the patient's problems is sheer ARROGANCE!!
Shocked - I really feel for your dilemma. My only recommendation is to put together all of your data and find a neuro who sees it for what it is. You have had two neurologists that have thought this was MS. One only changed his mind because of the LP (and made an error in doing that). The other moved. When you find another you can present the story that way. 2 out of 3 thought it was MS. And present the data that 5% or more can have a negative LP. Ask for an expanation as to WHY you can be that 1 in 20.
It means more doctor-shopping to find a doctor that will THINK and not react to myths about the diagnosis. The data is out there for them to read.
Only wanting to do the "easy" cases is lazy.
Quix
You have my sympathy. My god you must be so damn confused, why is all this so confusing! I feel for you deeply, you must be so frustrated and I can understand you wanting a name for what is wrong and some understanding.
To be diagnosed and then have that diagnosis taken off you would be worse I think than to be just in limbo!!
I can relate, I was diagnosed initially with probable MS with this criteria:
Clinical Probable MS:
1. Two attacks and clinical evidence of one lesion. (Two attacks must involve separate parts of the CNS. Historical information cannot be considered substitute for clinical evidence.
2. One attack and clinical evidence of two separate lesions.
3. One attack, clinical evidence of one lesion and paraclinical evidence of another separate lesion.
I had my probable MS diagnosis changed then to a TM diagnosis when MRI was stable after many many years, I never did have any lesions show on MRI.
I also was told my ophalmologist that I had ON (but clinically), MRI did not support this but VEP were abnormal. Current neuro doubts that I had ON, he seems to think my eye issues were prob migraine but my right disc is palor and has slits in nerve fibre but field tests are now normal but they weren't in the past.
Sorry I know this is not about me, I really feel for you, the only reason why I am telling you this is to say I understand your confusion! I doubt if I have MS, but I am still confused.
To have something that causing you as much grief as you describe deserves to have a name, it sounds like MS, I agree with Lulu it does sound like you would be better on another DMD, yep I thought the goal of a DMD was to keep things stable.
You have my sympathy, I Feel your frustration!
UDkas.
To be diagnosed and then have that diagnosis taken off you would be worse I think than to be just in limbo!!
I can relate, I was diagnosed initially with probable MS with this criteria:
Clinical Probable MS:
1. Two attacks and clinical evidence of one lesion. (Two attacks must involve separate parts of the CNS. Historical information cannot be considered substitute for clinical evidence.
2. One attack and clinical evidence of two separate lesions.
3. One attack, clinical evidence of one lesion and paraclinical evidence of another separate lesion.
I had my probable MS diagnosis changed then to a TM diagnosis when MRI was stable after many many years, I never did have any lesions show on MRI.
I also was told my ophalmologist that I had ON (but clinically), MRI did not support this but VEP were abnormal. Current neuro doubts that I had ON, he seems to think my eye issues were prob migraine but my right disc is palor and has slits in nerve fibre but field tests are now normal but they weren't in the past.
Sorry I know this is not about me, I really feel for you, the only reason why I am telling you this is to say I understand your confusion! I doubt if I have MS, but I am still confused.
To have something that causing you as much grief as you describe deserves to have a name, it sounds like MS, I agree with Lulu it does sound like you would be better on another DMD, yep I thought the goal of a DMD was to keep things stable.
You have my sympathy, I Feel your frustration!
UDkas.
Have you tried more than one DMD? They really are the best chance at present to slow down the progression of this MiSerable disease and the fact that you are not on one means the MS can do as it wants. If the side effects are not too serious, maybe you could choose to suffer through with them rather than suffer with the progression of your disease?
I am still waiting to see scientifically proven evidence that LDN works - it still hasn't been done to the rigid standards that other drugs have stood up to. I know it makes people feel better temporarily, but that often only lasts a short period, sometimes only a few months. I hope it is doing something positive for you, but it would be so much better if you were on a DMD.
Wishing you well and hope you feel better soon.
Lulu
I am still waiting to see scientifically proven evidence that LDN works - it still hasn't been done to the rigid standards that other drugs have stood up to. I know it makes people feel better temporarily, but that often only lasts a short period, sometimes only a few months. I hope it is doing something positive for you, but it would be so much better if you were on a DMD.
Wishing you well and hope you feel better soon.
Lulu
he's made this decision because of no changes in your MRI? well, isn't that the point of DMD?
you must be so frustrated right now, to hear this.. no knowing is hard....
take care and we are here for you..
wobbly
you must be so frustrated right now, to hear this.. no knowing is hard....
take care and we are here for you..
wobbly
Lulu54,
He didn't take me off of my dmd, I took myself off of it as the side effects were worse than the disease for me. He offered other dmds & Ty
at my next appt with him (not the most recent appt) and I declined and asked to try ldn. This dr is at a MS clinic.
My concern is that I'm getting slowly worse. I got the impression that he doesn't think I've had ON. To be honest, not having MS is fine with me, but I would like to know what I have if it indeed it is not MS. I've gone through so many tests, all the mimics are negative, and yet I have 20 brain lesions, tremors (now all over my body), hyper reflexes, parathesias, scotomas, etc. I need a cane & a handicapped tag due to something! I just want to know what something it is!
I just feel so down right now. Maybe the first doctor was right and I was born this way. I don't know what else to think.
He didn't take me off of my dmd, I took myself off of it as the side effects were worse than the disease for me. He offered other dmds & Ty
at my next appt with him (not the most recent appt) and I declined and asked to try ldn. This dr is at a MS clinic.
My concern is that I'm getting slowly worse. I got the impression that he doesn't think I've had ON. To be honest, not having MS is fine with me, but I would like to know what I have if it indeed it is not MS. I've gone through so many tests, all the mimics are negative, and yet I have 20 brain lesions, tremors (now all over my body), hyper reflexes, parathesias, scotomas, etc. I need a cane & a handicapped tag due to something! I just want to know what something it is!
I just feel so down right now. Maybe the first doctor was right and I was born this way. I don't know what else to think.
This was a fairly calm rant for having your chain yanked so many times by these doctors. how can he override the ON dx?
Probable/possible MS can still be treated with a DMD - that is the approved therapy, according to the FDA. It makes little sense to me if this neuro thinks it probably is MS to have stopped your treatment.
Has he offered any other possible explanation for your illness? Is this 3rd neuro a specialist in MS or just a general neurologist? That might make a big difference.
Yes, a stable MRI is the goal. His confusion about that makes no sense, either.
A doctor can be as kind and attentive as all get-out, and still not giving you the best medical care. I would consider getting another opinion - and do it through an MS clinician.
be well,
Lulu
Probable/possible MS can still be treated with a DMD - that is the approved therapy, according to the FDA. It makes little sense to me if this neuro thinks it probably is MS to have stopped your treatment.
Has he offered any other possible explanation for your illness? Is this 3rd neuro a specialist in MS or just a general neurologist? That might make a big difference.
Yes, a stable MRI is the goal. His confusion about that makes no sense, either.
A doctor can be as kind and attentive as all get-out, and still not giving you the best medical care. I would consider getting another opinion - and do it through an MS clinician.
be well,
Lulu
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