[Rissa_TX]

Hi Everyone!

It's been a long time since I've logged in. Mostly because the specialist that I've been seeing downgraded me from my previous diagnosis of "Definite MS" to what I affectionately call "MS Watch." However, he told me that if his diagnosis relied entirely on my MRI, he would say that I have it. He says that even though I have 30+ lesions in my brain and numb/tingly fingers, I must exhibit symptoms or lesion formation through dissemination in time and space. So, he took me off the Avonex back in July. I was on it for the majority of the time between MRIs, so there was no progression to be seen on my last one. My next MRI is set for March. Fingers crossed for no progression. While I really do hate being in limbo, I also am grateful to see that I'm likely progressing slowly, if at all.

Anywho... the question that I have for y'all is this: Do any of you ever get minor dizzy/lightheaded spells? I've been getting them in split second doses for the last 2 or 3 weeks. They happen in random intervals all day long, every day. They're not majorly disrupting or anything, just odd feeling. I've been healthy and feeling great, other than these episodes. I guess I'm just wondering if I should consider this to be a new symptom, i.e. dissemination.

Do any of you have any fabulous advice for me? I'd love to hear whatever you have to say! Thanks!

[lady_express_44]

I guess he is looking for a "change", whether that be in symptoms or lesions, indicating RRMS. Of course PPMS would not require the same criteria (but he would expect ongoing progression and few lesions then).

Do you have high blood pressure? Have you had your cholesterol and sugar (diabetes) levels checked lately? Brain lesions can sometimes be confused for vascular issues, often caused by the above, especially as we age. (Don't know how old you are though ....). I only thought of that because it came up on another forum, and the lady was talking about a sense of lightheadedness too . . .

Of course that symptom could be related to MS too. I get that, but they've never nailed down the cause and have just concluded it's another one of those MS-things. I have been checked for everything else though.

Never "assume" anything is the MS.

Cherie

[NurseNancy]

i can't answer your Q, sorry.
but i'm confused. if you have 30 lesions what is your dr waiting for, a big flare?

what about getting a 2nd opinion.
i'm just concerned that while you're off meds and "waiting" that the disease could silently progress and then you could get a flare.

i'm not an expert but this concern comes to my mind.

[Rissa_TX]

Originally Posted by NurseNancy

i can't answer your Q, sorry.
but i'm confused. if you have 30 lesions what is your dr waiting for, a big flare?

what about getting a 2nd opinion.
i'm just concerned that while you're off meds and "waiting" that the disease could silently progress and then you could get a flare.

i'm not an expert but this concern comes to my mind.

Hi Nurse Nancy,
Believe it or not, this doc is actually my third opinion! I was seeing another neurologist, and he had me diagnosed with RRMS (30+ lesions on brain MRI, none on spinal MRI, no bands in spinal tap). He had started me on Avonex, and I decided to see the primary MS specialist in my area. He only sees people with MS, and is widely renowned for his research. He told me that if he were diagnosing based on MRI alone, he'd say I have MS without question. However, he said that there are lots of other things that can cause brain lesions but that may not progress (such as encephalitis as a child or or another vascular disorder). So, basically he's waiting to see if I either come up with a new symptom, or a new lesion on my next MRI in order to give me a solid diagnosis and put me back on the meds.
Thanks for your concern - I'm just trying to figure it all out!

[Rissa_TX]

Originally Posted by lady_express_44

I guess he is looking for a "change", whether that be in symptoms or lesions, indicating RRMS. Of course PPMS would not require the same criteria (but he would expect ongoing progression and few lesions then).

Do you have high blood pressure? Have you had your cholesterol and sugar (diabetes) levels checked lately? Brain lesions can sometimes be confused for vascular issues, often caused by the above, especially as we age. (Don't know how old you are though ....). I only thought of that because it came up on another forum, and the lady was talking about a sense of lightheadedness too . . .

Of course that symptom could be related to MS too. I get that, but they've never nailed down the cause and have just concluded it's another one of those MS-things. I have been checked for everything else though.

Never "assume" anything is the MS.

Cherie

Thank you for the ideas - I'll have my blood pressure and sugars checked. I'm 31 years old, and in good health other than this, but it's always good to check! You're right - I shouldn't assume that every little thing is MS!

[RedPenguins]

I'm also confused - as there is no "law" that in order to be diagnosed (dx) you need to have those criteria. If you read Cherie's earlier post about misdiagnosis - you will see that everyone has had other things done in order to be dx. For me, it was the neuro's exam and a positive MRI.

Personally - if you know that you would continue with the meds when dx, then I would let the doctor know that you don't want to stop and wait.

Was the MRI done with and without contrast? Have you had other testing done? Spinal tap? Blood work to rule out other things? (Like Lyme disease, etc.)

As for the "odd sensations" you describe - well, I have gotten those before I've ended up in a big, bad flare. The first time - before I was dx - I had this happen and thought nothing of it - until it started getting much worse.

Good luck and keep us posted!

~Keri

[Rissa_TX]

Originally Posted by RedPenguins

I'm also confused - as there is no "law" that in order to be diagnosed (dx) you need to have those criteria. If you read Cherie's earlier post about misdiagnosis - you will see that everyone has had other things done in order to be dx. For me, it was the neuro's exam and a positive MRI.

Personally - if you know that you would continue with the meds when dx, then I would let the doctor know that you don't want to stop and wait.

Was the MRI done with and without contrast? Have you had other testing done? Spinal tap? Blood work to rule out other things? (Like Lyme disease, etc.)

As for the "odd sensations" you describe - well, I have gotten those before I've ended up in a big, bad flare. The first time - before I was dx - I had this happen and thought nothing of it - until it started getting much worse.

Good luck and keep us posted!

~Keri

Hi Keri,
I'll have to find that post you mentioned. It sounds interesting.
However, as I understand it, according to the McDonald Criteria for MS diagnosis, there must be dissemination in space (different areas of the brain or spinal cord) as well as time (episodes at least a month apart). This is what the National MS Society says:
In order to make a diagnosis of MS, the physician must:
"Find evidence of damage in at least two separate areas of the central nervous system (CNS), which includes the brain, spinal cord and optic nerves AND Find evidence that the damage occurred at least one month apart AND Rule out all other possible diagnoses"
I've had a clear spinal tap, and clear blood work. I guess it's time for me to go back and see what the doc says this time. I'm ready to go back on the Avonex the moment he says the word... I still have a supply in my fridge.
(Oh, I forgot to mention that I've had a clear Evoked Potential test and both of my MRIs have been with and without contrast.)

[RedPenguins]

Yes, McDonald has a criteria list. I believe there's also another list somewhere. However, when you use the word "MUST" I am confused. MUST says who? My neuro didn't use it. All my neuro used was my exam and the MRI. I thought I had a pinched nerve in my face caused by TMJ (jaw problems) because half my face went numb last Xmas. Went to my dentist right after the new year (he was closed for the holidays) - and by then I had dizzines and vertigo. He told me to go to a neurologist. I made the appt and went two days later. I really thought it was a pinched nerve. Knew nearly nothing about MS! Was blown way out of the water when he immediately sent me for MRI upon finishing my exam...and he diagnosed me a few hours later.

So as far as the "must" - well, sure, the MS Society lists this as criteria...and a lot of neuros use it - but if you have enough "stuff" going on, a neuro can dx without you having met them.

(BTW, my diagnosis was confirmed by doctors at Johns Hopkins - top hospital in the country....and they also did it solely with MRI and physical exam....no other tests...no EVP or spinal tap, etc.) There is no law.

Yes, lots of things can cause lesions on the brain.... but usually with MS it is a certain type/formation (sorry, not the right lingo). A lot of people with MS have negative spinal taps.

What led the neuro to originally dx you with MS? It sounds like months have gone by...and you still have symptoms - and it sounds as though the dizzy spells you are having now are new ones?

I dunno - I'm one to side on the err of caution...such as - I would treat MS and not wait and see or never treat...it is a personal choice. I'm not saying you should push to have MS ...but for a neuro to say that what he sees on the MRI looks like MS - well that says a lot. Have you seen your MRI report? Does it list something about the lesions being in a "dawson's fingers" configuration?

When was the last MRI? July?

Also - if you're symptomatic now (and sounds like you are), I would push for the MRI NOW and not wait until March.... you could be at the beginning of an exacerbation...in which case, it might possibly show with contrast. I know when I had my last exacerbation, Hopkins told my local neuro to send me then for the MRI and not wait until my scheduled one a few weeks later. And sure enough, I showed enhanced lesions.

Remember - it's your health. You are the one who lives with it. You do have a say in your treatment!!

sorry, my soapbox.... You live with your pain/symptoms, not the doctors. They get to go home at night to their lives....you are living yours. My mantra has always been: MY life + MY disease = MY choice.

I also know that it is often held that # of lesions dont matter, etc...it's location, etc...blah blah blah as far as I'm concerned. 30 holes in my brain is enough to get me to take action! (then again, my MRI reports came back saying too many to count?!)

And if its not MS - then what heck is it?! Sorry - I'm a very pro-active and annoying person... Definitely NOT a wait-and-see type over here. If someone told me I had 30 holes in my brain and I felt lousy... I'd find out what it was....and not give up. But that's me.

Good luck - keep us posted!!

~Keri

[lady_express_44]

Keri, dissemination in time and space is really the ONLY requirement for a dx:

Originally Posted by lady_express_44

... what they're waiting for is either a second event (similar but different to the first) which would verify dissemination in "time". They also want it to occur in to different neurological area, which would give them dissemination in "space". That alone could get you a dx, with or without MRI verification.



That table is kinda confusing, when not in context of the entire article, but what it is saying is that you need 2 attacks + 2 "clinical" lesions (two different neurological areas affected). If you don't have that, then you move down to the next level of required evidence (on the table above).

However, if there isn't another clear attack that occurs, they will use the first attack as evidence of "one", then rely solely on the MRI results to eventually give them the evidence of dissemination in time and space. The criteria is much higher when relying on the MRI (and not a clear attack).

For proof of dissemination in space, they want to see a set combination of lesions apparent on the MRI:



As far as whether you had a second attack, they will need to see objective evidence of that before they would disregard the lack of sufficient (according to the above "space" table) MRI results.

For dissemination in time (and with no obvious "clinical" attacks), they have set criteria too:



Soooo.... you need to go to the neuro when you are in an attack!! Often the inflammation that is going on in an attack will clear up on a MRI within 30 days, so you need to get a MRI of these transitory lesions when the attack is happening. There can be permanent lesions that are there after the attack, but not necessarily either.

That neurologist (in my other posting) just summarized this concept by saying "history", and then he also included MRI, EVP, and LP. In fact the ONLY thing that is required for a dx is dissemination of time and space ("history"), not any of the other tests he is also evaluating.

Cherie

[RedPenguins]

Cherie - I understand that many doctors use the McDonald criteria...but many do not. Again, I'm unaware of any "law" that says it is a "must" to fit these criteria. No one says you have to meet the McD criteria. I certainly didn't! And I've read many others who have been diagnosed (accurately) that did not meet it.

My thought is - sheesh, the woman has 30 holes in her brain...the neuro said the MRI looked like MS - but there isn't enough info based on some rule book so he wouldn't dx. Well, my life has never followed a rule book! It doesn't sound like he has presented other possibilities to her and rather, they were just going to sit and wait for something to happen - like an exacerbation - rather than try to stave one off. I guess I don't operate under that premise.

Well, if I were a duck and it were hunting season...I certainly wouldn't sit around and wait! And to me - 30 lesions in the brain...makes it hunting season.

Then again - I wish and pray for Rissa that it isn't MS....although, if not - what is it?? Why does she have all these lesions? Why would one sit and wait to prove/disprove something instead of then trying to find an alternative explanation while waiting?

~keri


ps/ sorry, I'm in a foul/emotional mood tonight...practically everything is upsetting me and making me burst into tears.