Confused with no diagnosis

[jennder]

This all started 3 years ago when i felt like i was drugged and my balance was off and i was having horrible chest pain, went to the ER and everything checked out normal. I saw my family Dr. a few days later who asked me several questions and mentioned MS, she ordered a brain mri wich stated white matter lesions of the periventricular that are perpendicular to the corpus callosum, lesions in the rostrum of the corpus callosum and abnormal signal alteration along the collasal septal interface.

Very suggestive of MS. Ive been seeing a ms specialist for 3 years now and ive been tested for everything and shes ruled everything out that she can think off but still will not diagnose me until i have new or active lesions. This is where im ready to give up wondering do i have ms or something else and its good i dont have new lesions but frustrating also. How long can it take to have more lesions or active ones i wonder?

[SNOOPY]

Hi jennder and welcome to MSWorld

Multiple Sclerosis has a diagnostic criteria, The Revised McDonald Criteria, which relies heavily on MRI evidence. https://www.va.gov/MS/articles/2010_...ia_Revised.pdf

will not diagnose me until i have new or active lesions.

That's because you don't currently meet the diagnostic criteria.

How long can it take to have more lesions or active ones i wonder?

If what you have is MS at some point more/active lesions will show up. There is also the possibility you won't get more or active lesions because what you have might not be MS. Unfortunately, there is no single test, by it's self, that can give a diagnosis of MS, I really wish there was.

Have you had any MRIs of the spine? Multiple Sclerosis is a disease of the Central Nervous System(CNS) which includes the brain, optic nerves and spinal cord. Lesions can and do show up anywhere within the CNS,

[jennder]

Thank you for your response Snoopy,
i have had a spine mri showing nothing, Ive had an abnormal evoked potential and all eye exams from a neuro-opthomologist have also come back abnormal on the same eye, because i have buried drusen it confuses things on wether ive had ON or not. I still have chest pain on one side, mysterious ear pain, pins and needles in extremities, extreme fatigue, balance issues, heat intolerance, spacticity in my legs and have seen every Dr ive been told to see to rule out every other possibility and still sitting waiting for some answer after 3 years and its so frustrating and discouraging and seems like i will never know whats wrong.

[JerryD]

The response from Snoopy is exactly the response that I was going to make to your post. I think that you are not understanding, correctly, all of the information from the MS specialist. Or is it possible that your neurologist is not an MS specialist? Keep looking for answers. Don't give up! Good luck

[jennder]

Thank you JerryD,
I am seeing a MS specialist, your right maybe im confused or not understanding her correctly.Is there any specific questions i should be asking so im not so frustrated and feel like quitting?

[jreagan70]

Very suggestive of MS. Ive been seeing a ms specialist for 3 years now and ive been tested for everything and shes ruled everything out that she can think off but still will not diagnose me until i have new or active lesions.

Based on what you told us, plus a little filling in the blanks, your neuro can't diagnose you with MS because you don't meet the diagnostic criteria for MS: http://onlinelibrary.wiley.com/doi/1...ana.22366/full.

The criteria require at least two episodes of demyelinating activity separated in time, and you appear to be missing that (called dissemination in time). New or reactivated lesions will demonstrate activity over time and fulfill that criterion.

How long can it take to have more lesions or active ones i wonder?

MS can take as long as it wants to to develop new inflammation. In some people that happens within a few months. Other people go many years between episodes of inflammation. While past activity can give clues to future activity, it's impossible to predict when the next attack will happen.

The article about the diagnostic criteria is valuable because it discusses clinically isolated syndrome (CIS). In a nutshell, CIS is a condition that looks and acts like classical MS except there has been only one episode of demyelinating inflammation when a diagnosis of clinically definite MS requires two episodes.

Treatment protocols allow for CIS to be treated with MS treatment medications without a diagnosis of MS.

From your description it sounds like you may meet the criteria for CIS. Has your neurologist talked with you about CIS? Has she talked with you about starting on an MS treatment med? If not, it's time to bring it up. You can ask her straight out what's stopping her from diagnosing you with CIS?

Even though your neuro is an MS specialist, it doesn't mean she's infallible. Doctors have their own method of thought based partly on experience and partly on how they were trained. After 3 years, you might want to think about getting another opinion from another MS specialist from a completely different clinic and discussing CIS with that doctor also. Enough time has passed that you could benefit from a different viewpoint.

Research has shown that treatment is most beneficial in the earliest years of MS. And even when MS isn't overtly active with new lesions and flares, the disease process is still working subtly, quietly behind the scenes.

So the question comes up, what has been going on in your brain during the last 3 years even though you haven't developed new lesions and your MS specialist won't diagnose you with MS?

There's a school of thought that says that the last 3 years could have been part of those years of the best window of opportunity for early and most effective treatment. So since you appear to meet the criteria for CIS and would be a candidate for MS treatment meds, should any more of that window of opportunity for early treatment be allowed to go by?

That has to be weighed against whether you want to start on a treatment med. And you can't make that decision without a deep discussion with your neuro and being fully informed.

So please do read the article about the MS diagnostic criteria. Then study up about CIS. You can start by searching for CIS at the National MS Society website: nmss.org. Then talk to your neuro about it and find another MS specialist for a second opinion. If you've already seen all of the other medical specialists you've been sent to and every other possible cause for your signs and symptoms has been ruled out, it doesn't sound you need to see anyone else unless and until something new shows up.

This all started 3 years ago when i felt like i was drugged and my balance was off and i was having horrible chest pain, went to the ER and everything checked out normal. I saw my family Dr. a few days later who asked me several questions and mentioned MS, she ordered a brain mri wich stated white matter lesions of the periventricular that are perpendicular to the corpus callosum, lesions in the rostrum of the corpus callosum and abnormal signal alteration along the collasal septal interface.

Very suggestive of MS. Ive been seeing a ms specialist for 3 years now and ive been tested for everything and shes ruled everything out that she can think off but still will not diagnose me until i have new or active lesions. This is where im ready to give up wondering do i have ms or something else and its good i dont have new lesions but frustrating also. How long can it take to have more lesions or active ones i wonder?

This all started 3 years ago when i felt like i was drugged and my balance was off and i was having horrible chest pain, went to the ER and everything checked out normal. I saw my family Dr. a few days later who asked me several questions and mentioned MS, she ordered a brain mri wich stated white matter lesions of the periventricular that are perpendicular to the corpus callosum, lesions in the rostrum of the corpus callosum and abnormal signal alteration along the collasal septal interface.

Very suggestive of MS. Ive been seeing a ms specialist for 3 years now and ive been tested for everything and shes ruled everything out that she can think off but still will not diagnose me until i have new or active lesions. This is where im ready to give up wondering do i have ms or something else and its good i dont have new lesions but frustrating also. How long can it take to have more lesions or active ones i wonder?

[jennder]

I spoke to my MS specialist and she feels what i have is not MS related so i will need to start over with another Dr if i can find one in my area. Thanks for all your input.