cknmbbl
08-26-2008, 02:01 PM
Hi, Everyone is so nice on this board. I wondered if you would mind answering another question. I was wondering if you know of anyone whos most prominent symptom was vestibular loss? I'm wondering with MS if you can have loss of balance without lesions showing on an MRI?
Thanks!
CK
Thanks!
CK
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MSJayhawk
08-26-2008, 02:57 PM
In early stages you could have lesions failing to show up or the lesions might be too difficult to locate if they are spread apart. In the early stages MRIs may be run every 3 months or 6 months to determine a diagnosis and the progress of your particular MS.
Do not be dismayed if nothing is found in your initial MRI. You can still get a diagnosis and if it is really early, you might be able to adjust your life and avoid the stress triggers that can cause flare-ups.
Do not be dismayed if nothing is found in your initial MRI. You can still get a diagnosis and if it is really early, you might be able to adjust your life and avoid the stress triggers that can cause flare-ups.
cknmbbl
08-26-2008, 04:27 PM
Thanks. I am having MRI's every 6 months. One of my neuro suggested a spinal tap. I am considering this. I would hate for this to be something that could be treated to some extent and not doing it. At the same time, I'm not comfortable throwing meds at something without knowing what we are throwing them at.
CK
CK
Bearygood
08-26-2008, 04:32 PM
Hi, cknmbbl. You can unfortunately have a multitude of sx without anything showing up on an MRI. In general, lesions can take a very long time to show up -- it's the disease activity that causes the lesions so that comes first. We've seen people who haven't found another reason for their sx for many, many years and and still suspect MS. There just hasn't been enough "evidence" for them to get a dx. For those people, it still might NOT be MS but they just haven't gotten answers in any regard.
Bearygood
08-26-2008, 04:34 PM
Thanks. I am having MRI's every 6 months. One of my neuro suggested a spinal tap. I am considering this. I would hate for this to be something that could be treated to some extent and not doing it. At the same time, I'm not comfortable throwing meds at something without knowing what we are throwing them at.
CK
Only very aggressive doctors will treat MS without having enough evidence meeting the McDonald criteria -- it does happen but it's still pretty rare. I didn't have to have an LP but if I was experiencing sx and felt an urgency to get a definitive dx so I could treat it with meds, I would have one. Just remember that not all people with MS will have a positive LP.
CK
Only very aggressive doctors will treat MS without having enough evidence meeting the McDonald criteria -- it does happen but it's still pretty rare. I didn't have to have an LP but if I was experiencing sx and felt an urgency to get a definitive dx so I could treat it with meds, I would have one. Just remember that not all people with MS will have a positive LP.
cknmbbl
08-26-2008, 07:42 PM
Hi, I'm sorry. I meant taking the medications to treat my vestibular issues. If there is cause I would rather treat that then just trying different meds to ease symptoms. Do you have any idea what the % is of people who have a clear MRI, and are DXd with a spinal tap? It's amazing to me that something can cause such havoc with your body and it be that hard to "see" some how.
Thanks for all your input.
CK
Thanks for all your input.
CK
MSJayhawk
08-26-2008, 08:20 PM
Thanks. I am having MRI's every 6 months. One of my neuro suggested a spinal tap. I am considering this. I would hate for this to be something that could be treated to some extent and not doing it. At the same time, I'm not comfortable throwing meds at something without knowing what we are throwing them at.
CK
The LP is but a step towards a diagnosis. 15% of all MS persons have a negative LP. I am going on 26 years since my initial diagnosis (KUMC 1982), but my LP has continued to be negative. Have you had an evoked potential test yet? The McDonald criteria has a "check list", but it is not an end all- it is a standardized guideline that assists in determining a diagnosis. I have had excellent success working with the drs at Kansas University Medical Center and my current neuro is Dr. Sharon Lynch. She is quite knowledgeable and I would highly recommend her if you do not have a preference. She has worked with me to maintain my med free lifestyle and gives 150% in assisting with durable equipment needs and disability "hiccups".
Lastly, make sure you run the gauntlet of testing. it is a difficult time to endure, but if you have something that has a cure, you will be in better shape. Most doctors will approach any med use with extreme caution when there is not a definite diagnosis.
If you have not had all the "other tests", go ahead and give them a try and then have your LP as a last resort.
CK
The LP is but a step towards a diagnosis. 15% of all MS persons have a negative LP. I am going on 26 years since my initial diagnosis (KUMC 1982), but my LP has continued to be negative. Have you had an evoked potential test yet? The McDonald criteria has a "check list", but it is not an end all- it is a standardized guideline that assists in determining a diagnosis. I have had excellent success working with the drs at Kansas University Medical Center and my current neuro is Dr. Sharon Lynch. She is quite knowledgeable and I would highly recommend her if you do not have a preference. She has worked with me to maintain my med free lifestyle and gives 150% in assisting with durable equipment needs and disability "hiccups".
Lastly, make sure you run the gauntlet of testing. it is a difficult time to endure, but if you have something that has a cure, you will be in better shape. Most doctors will approach any med use with extreme caution when there is not a definite diagnosis.
If you have not had all the "other tests", go ahead and give them a try and then have your LP as a last resort.
cknmbbl
08-26-2008, 10:54 PM
Thanks for the advice. Actually I have been seeing a neuro at KU. He is the one who suggested the LP. I really like him, although my last several appointments have been rescheduled. It's funny some else just mentioned Dr Lynch to me this week. Maybe I need to go that avenue. This person told me she is will find an answer for me. I would think that the neuros there would kinda have their specialty. Like stoke, MS... I wonder why my neuro went straight to the LP. I can't believe that you have had this since 1982. Wow. I am very impressed with your knowledge and attitude. After almost 3 years of this my attitude is lacking on most days. Again, thanks for the advice.
CK Oh, my oldest started at KU this week Rock Chalk!
CK Oh, my oldest started at KU this week Rock Chalk!