Mcdonald criteria for diagnosis is confusing

[Daisycat]

So I have been spending time looking at stuff online today… ( bad I know) but I am still really confused with the stuff I am reading.


A diagnosis needs no additional data if a person presents with the following symptoms:

• two or more attacks of MS symptoms
• evidence of two or more lesions on the brain and spinal cord or central nervous system
• reasonable evidence of a previous MS flare

The only one of these I have is the second one. I cannot think of any other flares besides the double vision and I have my MRI report practically memorized. There is nothing at all in there about evidence of a previous flare. What would reasonable evidence of a previous flare even include?



The criteria for establishing dissemination in time include discovering:

• any new bright lesion on the central nervous system that did not appear on the last MRI scan
• an asymptomatic contrast-enhancing lesion and a non-contrast-enhancing T2 bright lesion on any one scan

Again this is not something I had on either of my MRI reports. I just reread them just to make sure I am not crazy, but there was nothing about either of those things. I guess I am just really confused about how with only one symptom I can be told you have this and there is no chance it could be anything else.


I know I did read that enhancing lesions are **usually** newer but sometimes old ones can act up again so it is not 100% to always say that one that enhances is new.


Sorry for the rambling I am just really getting anxious about seeing my new neurologist and more and more frustrated about how my old one treated me. I basically feel like the past year has been “wasted” since everything I know about this disease I have learned from the internet and I am sick of getting my hopes up that it is going to be something else.

[pennstater]

I thought your MRI had one enhancing lesion when you had the ON, and also had a non-enhancing lesion in different location than the enhanced one?

[Daisycat]

I thought your MRI had one enhancing lesion when you had the ON, and also had a non-enhancing lesion in different location than the enhanced one?

It had one enhancing one and some non enhancing ones but from what I got from reading this is there needs to be evidence of a second attack and since lesions can "reactivate" there is no way of knowing if one is newer or old just from one MRI. At least that is what I understood from my research.

Maybe my new neuro can explain it to me better , but the criteria sounded like you needed to have more evidence than just one episode of double vision to diagnose this disease.

[KoKo]

I know I did read that enhancing lesions are **usually** newer but sometimes old ones can act up again so it is not 100% to always say that one that enhances is new.

Daisycat ~

Even if an old lesion is re-enhancing, that would still be a sign of new inflammation, it seems to me.

Take Care

[pennstater]

It had one enhancing one and some non enhancing ones but from what I got from reading this is there needs to be evidence of a second attack and since lesions can "reactivate" there is no way of knowing if one is newer or old just from one MRI. At least that is what I understood from my research.

Maybe my new neuro can explain it to me better , but the criteria sounded like you needed to have more evidence than just one episode of double vision to diagnose this disease.

The non-enhancing lesions would have been considered a prior event, with the enhancing lesion the second event. Definitely a topic to walk thru with your neuro.

[IntoDust]

A diagnosis needs no additional data if a person presents with the following symptoms:

• two or more attacks of MS symptoms
• evidence of two or more lesions on the brain and spinal cord or central nervous system
• reasonable evidence of a previous MS flare

From everything I've read about your situation, here is my take:
- You have not had symptoms of two attacks.
You have only had one episode of diplopia.
- You do have multiple lesions on your MRI.
This satisfies the "dissemination in space" to meet the criteria.
I believe you said you had 3 or 4 lesions.
- You do have reasonable evidence of a previous flare.
This satisfies "dissemination in time" to meet the criteria.
You had one contrast enhancing lesion.
It does not matter if it is a new lesion that it enhancing, or if it is an old lesion that is reactivating. The fact that it was active at the time of diagnosis, and your other lesions were not, proves that the disease had been active both before and during your stay in the hospital.

You are so stuck on the exact age of your lesions that you are trying to split hairs in order to disprove your diagnosis. Stop getting stuck on whether or not the lesion was new. The activity within that lesion was new, as was proved by contrast enhancement. It is not only new lesions that prove the dissemination in time, but new activity, whether or not it is occurring in a lesion that is brand new or 10 years old.

I'm not sure how much more we can break this down for you to understand. I know that this disease is complex but no matter how many times you ask and rephrase this question, the answer is the same. Your MRI proved that the disease has been active at different times. Period.

Now, whether you are considered to have Clinically Isolated Syndrome or Clinically Definite Multiple Sclerosis is for your new neurologist to decide. Either way, you are at risk and by taking your medication and keeping yourself healthy you are doing everything you can to try to keep this at a single episode of diplopia.

[Daisycat]

Intodust

i am stuck on the age of my lesions I think because I’m trying to convince myself that it’s something else.

I haven’t had a real conversation with a dr so I’m trying to find anything that’ll prove this is something else.

[IntoDust]

i am stuck on the age of my lesions I think because I’m trying to convince myself that it’s something else.

I haven’t had a real conversation with a dr so I’m trying to find anything that’ll prove this is something else.

I really, really hope for your sake that this new neurologist you’re going to see is better than your first. We can give you answers here all day but until you hear it from a doctor you feel has your best interests in mind I don’t believe you’ll hear what we’ve been telling you.

Out of curiosity, do you know what other diseases cause enhancing brain lesions? Somebody correct me if I’m wrong because I’m very curious, but from what I’ve read I don’t think that any of the diseases that cause enhancing lesions are better than MS. They tend to be just as bad a diagnosis, if not worse.

[Daisycat]

I really, really hope for your sake that this new neurologist you’re going to see is better than your first. We can give you answers here all day but until you hear it from a doctor you feel has your best interests in mind I don’t believe you’ll hear what we’ve been telling you.

Out of curiosity, do you know what other diseases cause enhancing brain lesions? Somebody correct me if I’m wrong because I’m very curious, but from what I’ve read I don’t think that any of the diseases that cause enhancing lesions are better than MS. They tend to be just as bad a diagnosis, if not worse.

I am pretty sure there are some other diseases that cause enhancing lesions , but I can't remember them and am trying to not go back down the Dr google rabbit hole. It is something I am going to ask my new neuro about for sure.

[Mamabug]

Intodust

i am stuck on the age of my lesions I think because I’m trying to convince myself that it’s something else.

Ummm, Daisycat. You're moving backwards and slipping back into denial.

[MyGirlsMom]

I am pretty sure there are some other diseases that cause enhancing lesions , but I can't remember them and am trying to not go back down the Dr google rabbit hole. It is something I am going to ask my new neuro about for sure.

Daisy at, on my radiology report from my MRI, the radiologist commented that the lesions were consistent with multiple sclerosis. Did your report mansion that? Also, I had MS probably 15 years before diagnosis with all kinds of other problems including tripping, pain, facial pain/numbness, fatigue, itching, mubmess in hands, weakness in left leg, etc. I was basically told I was “crazy” as I went to the doctor over the years. When I had a large flare in 2009 and had my doctor the list of problems from over the years....he looked at me and commented that I had MS for a long time. Based on my dental records and sever unexplained pain in my teeth and jaw in 1992, I think that was probably one of my first epsisodes.

I too am hopeful your next neuro apponyment goes well and that this doc listens to you and takes time to explain things to you. Remember, you are his customer!!

Best wishes, MGM

[Daisycat]

I spend so much time thinking about anything that could have been the start of this. There is really nothing that comes to mind besides the double vision.

And Mamabug - knowing the age of the lesions would also give me a better idea of how long I have "had" this disease.

MyGirlsMom - it said lesions usually consistent with some type of demyelinating disease

[Mamabug]

And Mamabug - knowing the age of the lesions would also give me a better idea of how long I have "had" this disease.

I don't have a problem with you wanting to know the age of your lesions. My concern was that it appeared that you were looking for a different diagnosis again.

[Daisycat]

I don't have a problem with you wanting to know the age of your lesions. My concern was that it appeared that you were looking for a different diagnosis again.

At this point the only thing I am hoping for is CIS. I haven't found anything ( at least anything not equally as terrible or worse that it could be). So my hope is for CIS

[Myoak]

At this point the only thing I am hoping for is CIS. I haven't found anything ( at least anything not equally as terrible or worse that it could be). So my hope is for CIS

I recently looked at a small study which followed 120 people diagnosed with CIS for 30 years. It showed 77 went on to be diagnosed with MS. I don't have the data on the remaining 43.

Separately, Selma Blair was recently diagnosed with MS and her Instagram post was reported on buzzfeed. Sometimes a diagnosis can be a long time coming...

https://www.buzzfeed.com/adeonibada/...iple-sclerosis

The 46-year-old actor told her 663,000 followers on Saturday that she was diagnosed with the neurological condition in August but has experienced symptoms from as far back as 15 years.


"I was in this wardrobe fitting two days ago. And I am in the deepest gratitude. So profound, it is, I have decided to share. The brilliant costumer #Allisaswanson not only designs the pieces #harperglass will wear on this new #Netflix show , but she carefully gets my legs in my pants, pulls my tops over my head, buttons my coats and offers her shoulder to steady myself.

I have #multiplesclerosis . I am in an exacerbation. By the grace of the lord, and will power and the understanding producers at Netflix , I have a job. A wonderful job. I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken gps. But we are doing it . And I laugh and I don’t know exactly what I will do precisely but I will do my best. Since my diagnosis at ten thirty pm on The night of August 16, I have had love and support from my friends , especially @jaime_king @sarahmgellar @realfreddieprinze @tarasubkoff @noah.d.newman . My producers #noreenhalpern who assured me that everyone has something. #chrisregina #aaronmartin and every crew member... thank you.

I am in the thick of it but I hope to give some hope to others. And even to myself. You can’t get help unless you ask. It can be overwhelming in the beginning. You want to sleep. You always want to sleep. So I don’t have answers. You see, I want to sleep. But I am a forthcoming person and I want my life to be full somehow. I want to play with my son again. I want to walk down the street and ride my horse.

I have MS and I am ok. But if you see me , dropping crap all over the street, feel free to help me pick it up. It takes a whole day for me alone. Thank you and may we all know good days amongst the challenges. And the biggest thanks to @elizberkley who forced me to see her brother #drjasonberkley who gave me this diagnosis after finding lesions on that mri.

I have had symptoms for years but was never taken seriously until I fell down in front of him trying to sort out what I thought was a pinched nerve. I have probably had this incurable disease for 15 years at least. And I am relieved to at least know. And share. 🖤 my instagram family... you know who you are."