Aa
MS
I am a 48 year old female ,who started having blurred vision, head feeling like it's spinning, off balance, memory problems, toes numb, etc. So my primary doc ordered an MRI of the brain w/contrast..It came back with 20-30 white lesions /matter though out my brain, so she sent us to an MS specialist at Swedish hosp, she ordered 23 blood test, had an MRI of spine and throatic, and ultra sound of neck area for blood flow, all came back great ,except low on vitamin D..now she wants to do a spinal tap, and possible SSep, and Vep test..We are so frustrated with driving 2 plus hours round trip back and forth to hospital and we don't feel any closer to any answers. Can a person just have white lesions in the brain and be normal..She also wants to do an MRI every 6 months if spina tapl comes back normal, to check for growth and more white lesions form..Help troubled and confused...
I will never complain about my drive again, I can' t believe u have to drive that far. i sometimes think of getting a motorcycle, like my husband, but then I remember we live in WA...best wishes..and thanks for your advise..
Thanks for your support, we are going to the new Swedish in Issaquah, it's a drive, but they seem to treat us good..
You have gotten some very good advice from our forum members!
MS also requires that you have 2 different occurrences about 6 months apart (I think) instead of just one, so thus the multiple MRI's.
I had to smile at your 2 hr drive comment. I drive 465 miles one way to see my neurologist and so I understand. Sometimes you have to go where the good ones are. After the struggle I had finding a neuro who would even listen, I gladly transport myself for my visits and my monthly Tysabri infusions.
It is indeed a slow moving train and your doctors want to be very careful before assigning a diagnosis. You might want to look up the McDonald Criteria on our source pages. It will also give you more explanations on how MS is defined for diagnosis.
Welcome!
MS also requires that you have 2 different occurrences about 6 months apart (I think) instead of just one, so thus the multiple MRI's.
I had to smile at your 2 hr drive comment. I drive 465 miles one way to see my neurologist and so I understand. Sometimes you have to go where the good ones are. After the struggle I had finding a neuro who would even listen, I gladly transport myself for my visits and my monthly Tysabri infusions.
It is indeed a slow moving train and your doctors want to be very careful before assigning a diagnosis. You might want to look up the McDonald Criteria on our source pages. It will also give you more explanations on how MS is defined for diagnosis.
Welcome!
Thanks Kyle, that was a lot of answers. I am seeing Lily Jung at Swedish hosp in Issaquah, I was refrered to her because she studies MS.. Thanks again...
Yes I am seeing Dr. Lily Jung, she is kinda puzzled as we are. she is ruling out a lot of stuff. thanks for your info, anything helps.
Kyle is right... There are other reasons for lesions to be found on your mri. I should have mentioned that too. MS lesions have a, very specific look to them, so the specialist may take a look at them, and your other test results- and tell you she doesn't think it's MS at all.
Are you going to see Dr. Lily Jung. I think she may now go by Lily Jung Henderson? I have heard good things about her.
Are you going to see Dr. Lily Jung. I think she may now go by Lily Jung Henderson? I have heard good things about her.
Hi Katoz - I'm sorry you found us, but glad you're here :-)
The answer to your question is yes, people can have lesions and be normal. Diagnosing MS can be a very long and frustrating process. Unlike lots of other diseases there is no one test that will say "This is MS".
The blood tests you have add are used to rule out diseases that mimic MS, like Lyme disease. The MRI's you've had are another important part of the process. In your case it doesn't sound like the lesions in your brain enhanced in the presence of contrast. This means that they're not active/currently inflamed. All by themselves they don;t mean MS.
The LP (spinal tap) is used to look for oligoclonal bands that show up in your spinal fluid, but not in a blood sample taken at the same time. O-bands are specific pattern of proteins. If they are present in your spinal fluid butt not in the blood, it points to MS. If they are present in both it points away from MS. If you have lesions and o-bands unique to your spinal fluid it really starts to point to MS.
The most important part of the diagnostic process is the clinical exam. All of the tests are used to support the findings of the clinical exam. It sounds like you clinical exam, coupled with your test results lead your doc to want to keep an eye on you. MS is a possibility, but the doc doesn't have enough info yet.
I looked up Swedish Hospital in Seattle. It looks like they have a comprehensive MS center. I would trust them, but I would vigilant. It's your body!
Unfortunately there is now way to speed up the diagnostic process. Fortunately MS, if that's what ails you, moves very slowly, so you have time. Are your symptoms under control?
Keep us posted.
Kyle
The answer to your question is yes, people can have lesions and be normal. Diagnosing MS can be a very long and frustrating process. Unlike lots of other diseases there is no one test that will say "This is MS".
The blood tests you have add are used to rule out diseases that mimic MS, like Lyme disease. The MRI's you've had are another important part of the process. In your case it doesn't sound like the lesions in your brain enhanced in the presence of contrast. This means that they're not active/currently inflamed. All by themselves they don;t mean MS.
The LP (spinal tap) is used to look for oligoclonal bands that show up in your spinal fluid, but not in a blood sample taken at the same time. O-bands are specific pattern of proteins. If they are present in your spinal fluid butt not in the blood, it points to MS. If they are present in both it points away from MS. If you have lesions and o-bands unique to your spinal fluid it really starts to point to MS.
The most important part of the diagnostic process is the clinical exam. All of the tests are used to support the findings of the clinical exam. It sounds like you clinical exam, coupled with your test results lead your doc to want to keep an eye on you. MS is a possibility, but the doc doesn't have enough info yet.
I looked up Swedish Hospital in Seattle. It looks like they have a comprehensive MS center. I would trust them, but I would vigilant. It's your body!
Unfortunately there is now way to speed up the diagnostic process. Fortunately MS, if that's what ails you, moves very slowly, so you have time. Are your symptoms under control?
Keep us posted.
Kyle
Welcome. I'm glad you found this forum, but I'm sorry you needed to... Unfortunately, your case does sound like MS. The reason it takes so long to get answers is because MS is notoriously difficult to diagnose. There are very specific criteria that must be met first. It's important to press on with the diagnostic process, even if it takes time.
I live in the Greater Seattle area. There is a new Swedish Hospital branch in the town I live in... (I see the Specialists @ Virginia Mason though...)
Hang in there.
Tammy
I live in the Greater Seattle area. There is a new Swedish Hospital branch in the town I live in... (I see the Specialists @ Virginia Mason though...)
Hang in there.
Tammy
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