Toni110364
05-26-2009, 10:49 PM
Hi everyone,
I haven't been on here in a while, just wanted to check in and tell whoever is interested what is going on in my world........The last time I posted I was scheduled to see an MS specialist in Winston Salem, NC. At that appt. he just looked at my MRI scans that I brought with me. He confirmed the scans looked good but said it was not impossible to have an MS dx without lesions. After doing a few in office balance tests, he agrees with original Neuro that something neurological is going on. He did some pin point testing on my arms and legs and I couldn't feel the "point",-- it only felt like someone touching me with their fingertip.
He also did some kind of test with a vibration tool of some kind and I had absolutely no sensation of vibration in my right foot So from there he ordered evoked potentials tests. I did these tests on May 20th and now I am playing the waiting game again. I won't find out anything until my next appt. which is July 2. I just wanted to know what anyone else has expierenced with the EV tests. It seemed like everything went well, but who knows......
When they kind of shocked me with the electrodes on my arms and legs she did make the comment that she had to turn up the machine pretty high to get a response from me. Does that mean anything? Just wondering....He also
said if these tests didn't show anything he was going to order another LP. He said that most smaller hospitals rely on "in house" testing and he doesn't trust that. He wants me to retest at his hospital where he seems to think they know more about what they are looking for. So if anyone has
any comments on this EV test thing if would be really helpful. Thanks again everyone for always being here to read my endless chatter. ;) {hugs}
I haven't been on here in a while, just wanted to check in and tell whoever is interested what is going on in my world........The last time I posted I was scheduled to see an MS specialist in Winston Salem, NC. At that appt. he just looked at my MRI scans that I brought with me. He confirmed the scans looked good but said it was not impossible to have an MS dx without lesions. After doing a few in office balance tests, he agrees with original Neuro that something neurological is going on. He did some pin point testing on my arms and legs and I couldn't feel the "point",-- it only felt like someone touching me with their fingertip.
He also did some kind of test with a vibration tool of some kind and I had absolutely no sensation of vibration in my right foot So from there he ordered evoked potentials tests. I did these tests on May 20th and now I am playing the waiting game again. I won't find out anything until my next appt. which is July 2. I just wanted to know what anyone else has expierenced with the EV tests. It seemed like everything went well, but who knows......
When they kind of shocked me with the electrodes on my arms and legs she did make the comment that she had to turn up the machine pretty high to get a response from me. Does that mean anything? Just wondering....He also
said if these tests didn't show anything he was going to order another LP. He said that most smaller hospitals rely on "in house" testing and he doesn't trust that. He wants me to retest at his hospital where he seems to think they know more about what they are looking for. So if anyone has
any comments on this EV test thing if would be really helpful. Thanks again everyone for always being here to read my endless chatter. ;) {hugs}
Sponsor
MSJayhawk
05-26-2009, 11:13 PM
Your neurologist is too dependent upon the MRI. Long before there were MRI's there were diagnostic tools such as the electrodes. The doctor admits something neurological is going on- ask him what it is if it is not MS. My evoked potentials always showed positive results. There is no single diagnostic tool available that will diagnose MS. If there were, there would be no limbo-land. Keep pushing the doctor. Ask them for a referral if they will not diagnose you.
Mel52
05-27-2009, 05:57 PM
Nikki, I had the evoked potentials for the vision and the limbs. I am already hard of hearing so no point for that test. My vision test came out ok but the left side of my body was abnormal. The neurologist said she can't tell if it is coming from the brain or the spine. So what is the point of the test? I knew something wasn't right on my left side.
I agree with you regarding the doctors being too dependent on the MRI. They all seem baffled by my cat scan and can't tell what they are, other than multiple unusual calcifications and abnormal shrinkage. What did the drs do in the "olden" days?
I agree with you regarding the doctors being too dependent on the MRI. They all seem baffled by my cat scan and can't tell what they are, other than multiple unusual calcifications and abnormal shrinkage. What did the drs do in the "olden" days?
MSJayhawk
05-27-2009, 06:11 PM
In the old days they would paint on the cave walls and hold broken limbs up to the light....:)
Before the days of the MRI, doctors would isolate what you did not have. When they got to the end of their list, they would diagnose MS. Hmmmm, like they do nowadays! LOL, the MRI is another exclusionary tool. Viewing the lesions like the "Holy Grail" only tells the doctor that at some point in time you might have had a viral infection. The initial MRI really cannot be treated as anything but a benchmark. Down the road, the doctor will view results to establish whether or not there is disease progression.
If your neurologist is solely relying on the MRI, find another doctor because that doctor is not even following the established McDonald Criteria.
Before the days of the MRI, doctors would isolate what you did not have. When they got to the end of their list, they would diagnose MS. Hmmmm, like they do nowadays! LOL, the MRI is another exclusionary tool. Viewing the lesions like the "Holy Grail" only tells the doctor that at some point in time you might have had a viral infection. The initial MRI really cannot be treated as anything but a benchmark. Down the road, the doctor will view results to establish whether or not there is disease progression.
If your neurologist is solely relying on the MRI, find another doctor because that doctor is not even following the established McDonald Criteria.
MSNik
05-27-2009, 07:43 PM
Mel, you wrote a "answer" to me. I wanted to point out that Im not the one who posted ....(Jayhawk was)
But to touch on what you wrote: The point of the Evoked Potential test is to figure out how quickly the brain responds to electrical shock and where the damage is. I had Evoked Potentials on my hands to make sure that the hands werent the problem (they are numb and tingling) and to verify that it was an electrical signal from the brain resulting in the pain...it was.
I agree with MSJayhawks analogy of how they used to check MS to a point, however, there is one thing that MRIs DO show which should be acknowledged. If there is something going on at the time of the MRI and contrast is used, the lesion or attack lights up. The lesion shows brightly on the MRI picture, thus giving the doctor a better idea of what is new and what is old, and where the newest attacks are. This sometimes, helps correlate with the symtoms one is having. I know that when I had my big attack, I had an MRI at that time, and you could see over 50 lesions, 10 of which were all in the same area and all of which were causing the damage to my hand- however, in order to double check that, Evoked Potentials were done.
I also have weakness on my left side, which is not apparent from MRIs, but is apparently in Evoked Potentials- further analyzation shows that the lesions which are in my brain are causing the weakness....they are in areas which the neurologist is able to identify.
This is a big part of why we shouldnt try to read MRIs , CT scans or try to self diagnos- there are too many things to know, and since no two cases of MS are alike, trying to say that you have what someone else has, only works for soo long. That person might progress while you might never, and vice versa. The disease is very differnt for everyone. I hope this makes sense??
Nikki
But to touch on what you wrote: The point of the Evoked Potential test is to figure out how quickly the brain responds to electrical shock and where the damage is. I had Evoked Potentials on my hands to make sure that the hands werent the problem (they are numb and tingling) and to verify that it was an electrical signal from the brain resulting in the pain...it was.
I agree with MSJayhawks analogy of how they used to check MS to a point, however, there is one thing that MRIs DO show which should be acknowledged. If there is something going on at the time of the MRI and contrast is used, the lesion or attack lights up. The lesion shows brightly on the MRI picture, thus giving the doctor a better idea of what is new and what is old, and where the newest attacks are. This sometimes, helps correlate with the symtoms one is having. I know that when I had my big attack, I had an MRI at that time, and you could see over 50 lesions, 10 of which were all in the same area and all of which were causing the damage to my hand- however, in order to double check that, Evoked Potentials were done.
I also have weakness on my left side, which is not apparent from MRIs, but is apparently in Evoked Potentials- further analyzation shows that the lesions which are in my brain are causing the weakness....they are in areas which the neurologist is able to identify.
This is a big part of why we shouldnt try to read MRIs , CT scans or try to self diagnos- there are too many things to know, and since no two cases of MS are alike, trying to say that you have what someone else has, only works for soo long. That person might progress while you might never, and vice versa. The disease is very differnt for everyone. I hope this makes sense??
Nikki
Mel52
05-27-2009, 08:37 PM
Oops you are right Nikki, I referred it back to you when it was Jayhawk who wrote. It sounds like your Evoked Potential test really honed in on the signals. I wonder why my dr can't tell if the abnormality is in the brain or the spine. I know having back surgery can affect the test too, but the tech said she was getting a good reading.
Not being able to have a MRI makes me feel like I am back in the dinosaur days, having to depend on a cat scan and an upcoming spinal tap. Jayhawk, I will look up McDonald criteria as that is a new term for me.
Not being able to have a MRI makes me feel like I am back in the dinosaur days, having to depend on a cat scan and an upcoming spinal tap. Jayhawk, I will look up McDonald criteria as that is a new term for me.
MSNik
05-27-2009, 09:32 PM
Mel, youre doing just fine! There isnt anything they do for MS, you know that, right? Besides taking a drug to hopefully prevent progression- thats about it. The rest is symtom management....so go ahead with your CTs and LPs and any other tests you can get Kaiser to pay for- and get your answers! But in the meantime, remember, this disease is alot to do with how you handle things...and you have to take care of yourself. I think, from reading your posts, that you are doing amazingly well!
Nikki
Nikki
Mel52
05-27-2009, 10:44 PM
Thank you Nikki. Everytime I start to have a pity party that lasts too long,I think of a soldier who is away from home dying and being disabled for us. That puts things in place for me.
I understand there isn't much that can be done for m.s. but taking the fear out of the unknown will give me some empowerment whatever it is I have going on.
I understand there isn't much that can be done for m.s. but taking the fear out of the unknown will give me some empowerment whatever it is I have going on.
Toni110364
05-27-2009, 10:56 PM
Hi guys,
I think you may have misread or I may have mis-typed my original info. What I meant to say is the Dr. is agreeing with my original Neuro that my MRI's are clear but that he still cannot rule out MS because it is still 'possible' to have MS and have a clear MRI. I didn't mean he had said it was 'impossible' to have MS at this point. That is why he sent me for the evoked potential tests and depending what that and some more blood work shows, he may order another LP. Am I making more sense this time? I sure hope so. I feel like I am just rambling ;) Anyway, thanks for the comments and I hope to find out something soon. As always..... {HUGS}
I think you may have misread or I may have mis-typed my original info. What I meant to say is the Dr. is agreeing with my original Neuro that my MRI's are clear but that he still cannot rule out MS because it is still 'possible' to have MS and have a clear MRI. I didn't mean he had said it was 'impossible' to have MS at this point. That is why he sent me for the evoked potential tests and depending what that and some more blood work shows, he may order another LP. Am I making more sense this time? I sure hope so. I feel like I am just rambling ;) Anyway, thanks for the comments and I hope to find out something soon. As always..... {HUGS}
MSNik
05-28-2009, 06:42 AM
Toni, makes perfect sense. Keep us posted and we will all be pulling that you get a diagnosis soon! Have a great day.
Nikki
Nikki