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Mayo Clinic Report _Quix can you review?
I thought I would share what my report from the Mayo Clinic said. I am confused and thought maybe some of you here could help me understand. In my report, under neurological examination she wrote: Important findings are- abnormal gait noted as Trendelenberg type gait, subtle coordination difficulties with both upper and lower extremities, low amplitude tremor of the left leg when held up for more than 10 seconds, pinprick reduced at the level of T7-T8. Aren't these objective findings? She is the one that noticed them, so I would think that is objective, right? Also, she did not note my Romberg test, which I failed miserably when I almost hit the floor, but that is mute at this point as she did not even note it. She noted low Vitamin D levels. She noted one lesion in the subcortical white matter that is nonspecific and nonenhancing. (What does that mean?) She noted that she had chest xray and oximetry to rule out lung disease that might cause the fatigue, all tests were normal. She noted possible metabolic syndrome, ran tests, all were negative so she ruled that out. She ruled out autoimmune disorders.
Her final note was this: Symptoms are highly suggestive of multiple sclerosis. Now is that still considered "possible MS" or "probable MS"?
Her suggestion was as follows: In rare situations, symptoms are highly suggestive of MS, but tests may be normal. This makes it difficult to commit her to treatment, however, we discussed disease modifying therapy Copaxone. It is essential to provide close monitoring and follow up of MRI at 1 year and 2 year. If there are no objective findings on the MRI or physical examination then I would not subject her to the risk of disease modifying drugs.
So what exactly is she suggesting? None of this makes sense to me. When she spoke to me she said she was diagnosing "Possible MS", but when my doctor read this he took it as she was diagnosing MS because she stated it was suggestive of MS. Then she told me that there were no objective findings, but when my doc read the report he said the neurological exam findings she wrote down are objective findings. She told me that she was going to suggest Copaxone, but it sounds to me that she is saying they should not put me on it for 2 more years. I am so confused.
Her final note was this: Symptoms are highly suggestive of multiple sclerosis. Now is that still considered "possible MS" or "probable MS"?
Her suggestion was as follows: In rare situations, symptoms are highly suggestive of MS, but tests may be normal. This makes it difficult to commit her to treatment, however, we discussed disease modifying therapy Copaxone. It is essential to provide close monitoring and follow up of MRI at 1 year and 2 year. If there are no objective findings on the MRI or physical examination then I would not subject her to the risk of disease modifying drugs.
So what exactly is she suggesting? None of this makes sense to me. When she spoke to me she said she was diagnosing "Possible MS", but when my doctor read this he took it as she was diagnosing MS because she stated it was suggestive of MS. Then she told me that there were no objective findings, but when my doc read the report he said the neurological exam findings she wrote down are objective findings. She told me that she was going to suggest Copaxone, but it sounds to me that she is saying they should not put me on it for 2 more years. I am so confused.
THANK YOU!!! The report confused me so much that I had to read it several times! Then I thought I was misunderstanding it, so I posted here, and sure enough...I understood, but was still confused by the whole thing!
As for Urodynamic testing..I have not had that and she did not suggest it. I think I will talk to my doc about that.
I am definitely amazed that the Mayo Clinic was not what I thought it would be. I could not understand why she would day start the DMD but stop it if there was no progression. I thought if there was no progression the DMD was working!!!
My only saving grace may be that she diagnosed Probable MS, which may help when I see the local MS specialist in May. I am hoping this local specialist is a good one because my insurance is done allowing referrals for neurology at this point. They normally give you three referral and that is it, but I got lucky and they allowed me 4, so the local MS specialist is my last hope!!
Thanks Quix!
As for Urodynamic testing..I have not had that and she did not suggest it. I think I will talk to my doc about that.
I am definitely amazed that the Mayo Clinic was not what I thought it would be. I could not understand why she would day start the DMD but stop it if there was no progression. I thought if there was no progression the DMD was working!!!
My only saving grace may be that she diagnosed Probable MS, which may help when I see the local MS specialist in May. I am hoping this local specialist is a good one because my insurance is done allowing referrals for neurology at this point. They normally give you three referral and that is it, but I got lucky and they allowed me 4, so the local MS specialist is my last hope!!
Thanks Quix!
Oh, Good Gracious! She is even more of a weenie than I thought before. I doubt she could ever come down off that fence she's riding. We had another member who had a Dr. On-the-Fence.
First she notes a whole slough of positive findings, some objective and some subjective. These include abnormal gait, upper AND lower extremity coordination difficulties, and action tremor in a leg. these are mostly objective findings which can be affected by patient effort.
Then she notes a spinal level of decreased pin pr ick. In reality this is subjective because it has to do with patient report of whether or not it is felt as dull or sharp. She notes several things in the history that were of concern, but that she ruled out non-neurologic causes. She notes the classic urinary frequency and frequent UTI's (haven't you ever had Urodynamic Testing?)
Then she does this ridiculously stupid and circular discussion of how MS can appear in the absence of physical findings or with normal MRIs and other tests, YET she has already mentioned multiple neurologic abnormalities on exam.
True to the Mayo Clinic she is a lesion counter. They did an MRI looking for a lesion and found one, but because it isn't huge and perfect call it non-specific so it appearently doesn't count. In reality "nonspecific" says many different things could have caused it. But, when you went looking for an abnormality because of suggestive symptoms and finding and FIND ONE, then you have to consider strongly that that lesion may well be the cause of the symptoms. This is especially true after ruling out the other potential causes!!!
Then she labels your evidence "HIGHLY suggestive of MS"!! OMG - That is only one step down from "diagnostic of MS" and we know that nothing is truly diagnostic of MS. So based on the rules of diagnosis, she mentions a highly suggestive history and physical with AN ABNORMAL MRI. UBO are abnormalities. Period.
Her summary is sooo circular and self-contradictory that it almost confuses me. Her test says that you almost surely have MS. Then, to sum it up, she calls your status "Possible MS". This is from the mind of a very nice mental midget.
By her own description, the least she could label you is Probable MS, and I actually think that, by her own words, in her text, she did diagnose you. I agree with your local doctor. By the assessment of many experts in the field you make diagnosis if you have had at least two separate attacks. Certainly you would qualify for treatment.
This Mayo doc wants to wait until the MRI reassures her sense of rules - rules that real MS does not follow! She see you and acknowledges what you are going through, but she is diagnosing and treating the MRI.
HOLD THE MAYO!
Further, she talked to you about beginning treatment and then stopping it if you or the MRI didn't progress.
what?
The DMD prevent some progression when the work. What in the world is this woman using for brains?? there is nothig rational at all about her thought processing and decision-making.
Sorry you went through the whole thing for this. In reality she did bring you up to the brink of a diagnosis - but then she scr*ewed it up.
Anybody for TiddleeWinks?
Quix
I give up.
First she notes a whole slough of positive findings, some objective and some subjective. These include abnormal gait, upper AND lower extremity coordination difficulties, and action tremor in a leg. these are mostly objective findings which can be affected by patient effort.
Then she notes a spinal level of decreased pin pr ick. In reality this is subjective because it has to do with patient report of whether or not it is felt as dull or sharp. She notes several things in the history that were of concern, but that she ruled out non-neurologic causes. She notes the classic urinary frequency and frequent UTI's (haven't you ever had Urodynamic Testing?)
Then she does this ridiculously stupid and circular discussion of how MS can appear in the absence of physical findings or with normal MRIs and other tests, YET she has already mentioned multiple neurologic abnormalities on exam.
True to the Mayo Clinic she is a lesion counter. They did an MRI looking for a lesion and found one, but because it isn't huge and perfect call it non-specific so it appearently doesn't count. In reality "nonspecific" says many different things could have caused it. But, when you went looking for an abnormality because of suggestive symptoms and finding and FIND ONE, then you have to consider strongly that that lesion may well be the cause of the symptoms. This is especially true after ruling out the other potential causes!!!
Then she labels your evidence "HIGHLY suggestive of MS"!! OMG - That is only one step down from "diagnostic of MS" and we know that nothing is truly diagnostic of MS. So based on the rules of diagnosis, she mentions a highly suggestive history and physical with AN ABNORMAL MRI. UBO are abnormalities. Period.
Her summary is sooo circular and self-contradictory that it almost confuses me. Her test says that you almost surely have MS. Then, to sum it up, she calls your status "Possible MS". This is from the mind of a very nice mental midget.
By her own description, the least she could label you is Probable MS, and I actually think that, by her own words, in her text, she did diagnose you. I agree with your local doctor. By the assessment of many experts in the field you make diagnosis if you have had at least two separate attacks. Certainly you would qualify for treatment.
This Mayo doc wants to wait until the MRI reassures her sense of rules - rules that real MS does not follow! She see you and acknowledges what you are going through, but she is diagnosing and treating the MRI.
HOLD THE MAYO!
Further, she talked to you about beginning treatment and then stopping it if you or the MRI didn't progress.
what?
The DMD prevent some progression when the work. What in the world is this woman using for brains?? there is nothig rational at all about her thought processing and decision-making.
Sorry you went through the whole thing for this. In reality she did bring you up to the brink of a diagnosis - but then she scr*ewed it up.
Anybody for TiddleeWinks?
Quix
I give up.
I'll be back to review. I've not been well, but also have have beaucoodles of things to do.
Q
Q
I'll take a stab at interpreting what I read above.
She seems to list a number of physical findings she sees as significant. Of what you have quoted here though she saves the word objective for the black and white (and gray) of an MRI. With that statement I think she's saying she would feel more confident with some concrete test results to point to. I don't hear her saying the physical finding are NOT objective.
I'm thinking a non-specific lesion is one not having the classic shape or location found in MS or another specific disease. Non-enhancing may mean it doesn't 'light up' with contrast.
The word suggestive means possible to me.
It also sounds like although she isn't sure this is MS, she talked to you about starting a DMD. Then she suggests close follow-up over the next year or two so that if there is no further evidence of MS you could be taken off the (possibly) unnecessary drug. I am interested to know about these RISKS. I thought these were fairly safe drugs?
At any rate, she certainly made sure no one would put her in the committed corner on this one. She gets to be 'right' no matter what happens down the road. You get little for your time, money and faith.
Hope the next neuro is better!
Mary
She seems to list a number of physical findings she sees as significant. Of what you have quoted here though she saves the word objective for the black and white (and gray) of an MRI. With that statement I think she's saying she would feel more confident with some concrete test results to point to. I don't hear her saying the physical finding are NOT objective.
I'm thinking a non-specific lesion is one not having the classic shape or location found in MS or another specific disease. Non-enhancing may mean it doesn't 'light up' with contrast.
The word suggestive means possible to me.
It also sounds like although she isn't sure this is MS, she talked to you about starting a DMD. Then she suggests close follow-up over the next year or two so that if there is no further evidence of MS you could be taken off the (possibly) unnecessary drug. I am interested to know about these RISKS. I thought these were fairly safe drugs?
At any rate, she certainly made sure no one would put her in the committed corner on this one. She gets to be 'right' no matter what happens down the road. You get little for your time, money and faith.
Hope the next neuro is better!
Mary
Although, I don't want to put her completely down, she did listen to me and she is the first one to ever listen, and at least she didn't brush me off and tell me it's old age spots or migraine spots..lol
Thank you both!!! So this is not a definite MS diagnosis..its more of a probably MS diagnosis? Geez..all that travel, time and trouble for what?? Maybe the MS specialist here will want to start treatment, I will be seeing her in May and maybe she will have more of a backbone. UGH. It is doctors like this..and so many others..that cause us to have to wait and wait when we could be getting treatment..its like they want you to suffer and then suffer some more....
This neuro certainly hedged her bets with this one. From what she wrote, you have enough clinical symptoms to be considered positive but she doesn't want to be responsible for calling it. Why? I could only guess, but again we go back to the institution that she works for. I wonder if her practice were elsewhere, would she have started a dmd?
The line about symptoms present but tests results not showing the MS probably relates to the fact that not all MS patients show lesions, or enough classic ms lesions, on MRI's or O-bands in their CSF. That information is in our health pages, and can be found in other research information about MS.
Yes, the findings she listed are objective findings. They are observable and measurable, as opposed to the subjective findings which take the verbal history from the patient into consideration.
Bladder difficulties and subsequent infections are a known problem with MS patients and I can attest to that with my own experiences.
Read about parapelvic renal cyst at http://www.parkhurstexchange.com/imaging/2001-02-17?zid=49 It is a benign condition and is nothing to be concerned about if that is truly what it is. I would talk to your home doctor about its presence and be sure. You don't want to mess with your kidneys.
Did you have a discussion with her about copaxone? Her recheck at one and two years sounds like she suggests waiting, but if your own doctor reads it as a statement to begin treatment, I would go with that opportunity. But I'm no doctor and I'm not the patient either.
My suggestion here is to make a list of your questions from her report, and then call her office. Ask to speak with the nurse and relay your questions to her. Request a call back with the clarifications since her report is definitely muddled.
I hope something in here helps until Q comes along and can give you her medical take.
be well,
Lulu
The line about symptoms present but tests results not showing the MS probably relates to the fact that not all MS patients show lesions, or enough classic ms lesions, on MRI's or O-bands in their CSF. That information is in our health pages, and can be found in other research information about MS.
Yes, the findings she listed are objective findings. They are observable and measurable, as opposed to the subjective findings which take the verbal history from the patient into consideration.
Bladder difficulties and subsequent infections are a known problem with MS patients and I can attest to that with my own experiences.
Read about parapelvic renal cyst at http://www.parkhurstexchange.com/imaging/2001-02-17?zid=49 It is a benign condition and is nothing to be concerned about if that is truly what it is. I would talk to your home doctor about its presence and be sure. You don't want to mess with your kidneys.
Did you have a discussion with her about copaxone? Her recheck at one and two years sounds like she suggests waiting, but if your own doctor reads it as a statement to begin treatment, I would go with that opportunity. But I'm no doctor and I'm not the patient either.
My suggestion here is to make a list of your questions from her report, and then call her office. Ask to speak with the nurse and relay your questions to her. Request a call back with the clarifications since her report is definitely muddled.
I hope something in here helps until Q comes along and can give you her medical take.
be well,
Lulu
Hi there.
Sounds to me like you have a doctor who is afraid to commit dispite clinical exams,
and other possible mimics being ruled out.
I am sure someone else will jump on here that has some advice. I just wanted you
to lnow that I was thinking about you and the terrible woe's of Limbo - Land!
~Tonya
Sounds to me like you have a doctor who is afraid to commit dispite clinical exams,
and other possible mimics being ruled out.
I am sure someone else will jump on here that has some advice. I just wanted you
to lnow that I was thinking about you and the terrible woe's of Limbo - Land!
~Tonya
Sorry, my brain is totally not working tonight! One other thing noted from the MRI of the spine was "possible right parapelvic renal cyst". She never mentioned that to me, is that something I should be concerned about?? OK, I promise no more posts.
Sorry, forgot one more things she noted : pertinent positives: mild blurred vision and urinary frequency with multiple UTI's yearly. Before I left she also told me I had another UTI. I have read that MS can cause bladder dysfunction, is that true as well?
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