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Old 08-16-2012, 11:12 AM   #1
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Early diagnosis for MS

I am basically symptom free except for brain lesions found on an MRI while getting a scan for other reasons.

Should I start MS drugs right away, even though I'm symptom free, or wait until I experience a flare-up or other symptoms?

Any advice or experience would be appreciated.

 
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Old 08-16-2012, 11:24 AM   #2
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Re: Early diagnosis for MS

Welcome!

An MRI which shows lesions does not constitute a diagnosis for MS. Were you given a diagnosis by an MS Specialist?

The diagnosis should follow the Revised McDonald Criteria. Lesions can be caused by many different things. If you started taking a medicine for a disease without a proper diagnosis, should you start the meds?
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Last edited by MSJayhawk; 08-16-2012 at 11:34 AM. Reason: add

 
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Old 08-17-2012, 01:31 AM   #3
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Re: Early diagnosis for MS

Yes, I would like to know who gave you a MS diagnosis- OR are you assuming its MS because lesions were found on the MRI?

Lesions can be caused by many things- not just MS.

However if a MS specialist gave you the dx- due to meeting the mcDonald critria - start medication immediately. You do not wait for things to happen which cant be reveresed....you take the medicine and try to ward off things from happening...

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Old 09-15-2012, 03:28 PM   #4
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Re: Early diagnosis for MS

Hi Nikki,

Thanks for your response. So I have brain lesions but have normal spinal fluid and no lesions in my spine. It's a bit tricky. I don't fit the McDonald Criteria based on that, but clearly some demylinating process is going on. I don't know whether to start meds or not. Any advice based on this new information?

 
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Old 09-15-2012, 03:37 PM   #5
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Re: Early diagnosis for MS

You can have brain lesions and normal LP and still have MS. 15% of MSers who have had an LP fit into this category. Brain lesions do not have to be on the spine to make it MS and some MSers may start with lesions on the spine and not the brain.

Absent a diagnosis, it is difficult to move forward. You need a definitive diagnosis to know what meds you need to take.
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Old 09-15-2012, 05:56 PM   #6
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Re: Early diagnosis for MS

Hi again. I have brain lesions, many...no spinal lesions, normal LP and CSF. My LP is negative for anything. However, I most certainly have MS. I have had 3 relapses, including Optical Neuritis, have had neuropathy in my left hand/ fingers for 7 years now and have right side weakness. I have clinically presented with alot of small MS like symptoms, but to see me, you would NEVER know that Im sporting close to 100 lesions on my brain and brainstem.

I started on disease modifying drugs in the first month of my diagnosis, and to be honest, am glad I did. I was stable for 5+ years. When I started developing problems with Interferon (Rebif) due to building up antibodies to it, they took me off drugs. I started taking an exploratory drug, LDN, which is oral- and felt terrific for the next year. Ive now been on it almost 18 months; however in the past year, have developed many new lesions. Radiographically, I shouldnt be doing well.....clincially, I am stable.

SO, if you have met the mCDonald Criteria and have been given a positive MS dx, I would say start something immediately. YOu do not want to wait for "something to happen" which very well may be irreversible- when you could have avoided it happening all together.

The newest school of thought on MS drugs is to start with the very beginning of the disease- waiting is playing russian roulette. You just dont know what is going to happen..

Nikki
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Old 09-15-2012, 05:58 PM   #7
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Re: Early diagnosis for MS

Thanks for the information, MSJayhawk. My neurologist can't really give me a definitive diagnosis based on my brain lesions, normal CSF and normal spine scan. It's probable that I have MS since the lesions in my brain are in the typical places for MS, but she can't say for sure.

Is there any other way you know of to get a definitive diagnosis?

And I notice that you're med-free with an MS diagnosis from 1982. How do you manage that? Sounds amazing!

 
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Old 09-15-2012, 06:45 PM   #8
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Re: Early diagnosis for MS

Quote:
Originally Posted by Molecule14 View Post
Thanks for the information, MSJayhawk. My neurologist can't really give me a definitive diagnosis based on my brain lesions, normal CSF and normal spine scan. It's probable that I have MS since the lesions in my brain are in the typical places for MS, but she can't say for sure.

Is there any other way you know of to get a definitive diagnosis?

And I notice that you're med-free with an MS diagnosis from 1982. How do you manage that? Sounds amazing!
Is your neurologist an MS Specialist? Perhaps you need a second opinion. Did you have a VEP or any other tests?

I am med free and have been for almost 35 years. I was diagnosed in 1982 with progressive MS; there are no meds available for it. I track my avoidable triggers which allows me to control many of my symptoms.
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Old 09-16-2012, 06:12 AM   #9
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Re: Early diagnosis for MS

Hi again. There is only one way to get a MS diagnosis and that is to meet the McDonald Criteria.
If youre neurologist isnt sure if you meet it or not- go see a MS specialist and get a second opinion. Its very black and white. The fact that you have no CSF indicators, means NOTHING in the big picture, its not part of the McDonald criteria. ITs based on lesions, clinical assessment and symptoms.

You absolutely do not want to start on a disease modifying drug if you dont have MS; and you dont want to label yourself with MS if you dont have it. IT will change your life forever as far as insurance (both health and life) and future employment (by some employers).

Please go see another doctor.....there really is no such thing as being on the fence with this. Unless you are waiting for something to happen, which may be irreversible (there is no way of knowing) you are really playing with your future by allowing this person to say "im not sure".

Nikki
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