Clinical definition diagnosis

[Cann1980]

Back from the neuro appt.... Well he is old school and a bit gruff but I know he is a smart man so I with the flow.

So he did all the knee bumps and walking etc tests.. All fine
I had optic neuritis and lesions in brain... So this is the clinical definition of ms??

So he went through my list of symptoms I brought and he asked about my tingly neck ... I explained and said I always thought it was normal before this... He said " nope not normal it is ms" and he explained the lhermitis sign thing .. I already knew that thanks to my research and this awesome site :)

Now he is sending me for a spine MRI... Not looking forward to that... Machine scares me lol.
But if there is a lesion on spine I will go past the clinical definition. ... And then treatment.

So do I have ms? I asked him and he said I have the clinical definition... ??? I asked if I will go on a treatment plan he said no until a second flare or proof of one ... I thought there was treatments for clinical definition??? I am confused... Do I have ms technically without the further proof?

I assume I will have a spinal lesion anyway... My brain is full and I have ha this lhermitis sign for years and a horribly bad neck as well.. There has to be something there ... I think he assumes this as well.

Ok so that is my day... I thought I was going into this well researched .. But I guess I am still left not understanding ... I get most if it ... I just thought it would be a clinical definition and carry on... Then treatment ...

Oh and he said to start 2000 units of vitamin d daily .. And my siblings too ... My children 1000 units at age 9. He did not send me for any blood tests. Thoughts??

Your truly,
Confused .. Lol
Cann :)

Thank you in advance for clarification!!

[LisaJF]

I think there are many people who ended up frustrated knowing something is wrong, being told that something is wrong, being told that its probable MS, looks and smells like MS clinically and the patient ie YOU, ends up feeling like you're put on the side line while diagnostic tests take the spotlight. You're the one with the emotions and anxiety in the duration.  It can be very frustrating..

However, in my opinion, YOU do have a good doctor and he seems to be listening and acknowledging.  He definitely stated that he feels that clinically, you fit the definition of MS and wants the other tests to support it.  Which is the correct thought. r

I do not know your list of symptoms but I am sure they ae neurological in nature and correlates with the clinical definition of MS.  

Three weeks seems like forever for you I'm sure and I'm sorry that you have to wait that long to find about your health, but it will be soon.

Hang in there.

Lisa

[Corriel]

Gosh, you can't catch a break this month! Hang in there and it might be a good idea to look into the DMD and prov drug plan.

At least the neuro will have lots of time to review your results well before he sees you.

Hugs,
Corrie

[sllowe]

Quite the confident Doctor. That's a good thing.

MS is a clinical diagnosis, and this doc seems to feel you have it, just getting all the evidence (identified during exam, etc) in order.

You'll be told something soon for sure.

[Cann1980]

This might explain better:

Solitary small white matter lesion post column, c2-3 disc space about 5mm. ( demilination c2-3)
And
Small disc herniation c5-6 no cord contact

Kyle,
As annoyed as I am about this whole process I believe if he thought there was nothing else to find he would have just started me on dmd... However I gave him 2 pages of symptoms so he went with it an sent me for more testing ... I can understand that... Still annoying though.
I did have contrast on brain MRI but not on c spine
My next appt is with him and ms nurse and it is what I assume will be my answer session. I look forward to this... And hopefully being done with tests.

Aspen too... Maybe my extra info above helps... I know the radiologist who has done both my scans believes It is ms ... I had some insider info from the radiologist

Mommy ofntz.... There is only one ms nurse and to be honest I have been hard on her bc of my frustration of time ... I just hate waiting. I am sure she will be fine.. She helped me today and answers her phone first ring.. That is a bonus point for her :)

[kwarendorf]

Depending on how old school the doc is, they may be relying strictly on the MacDonald Criteria. Part of it states that there must be "dissemination in space". This means there has to be lesions in more than one location of the central nervous system (CNS). If you have lesions in one section of your brain and lesions on you c-spine, then you have met the dissemination in space" part of the criteria. That's why they do both brain and c/t-spine MRI's.

Another part of the criteria is "dissemination in time". THey can validate this in a couple of ways. One is to take new pics 6-12 months after the first set. If there are new lesions on the second set then the criteria is met. They can also meet the criteria in a single MRI session if the take pics with  and without contrast. All lesions will show up without contrast. When the contrast agent is added, new lesions will glow, or enhance. If you have some lesions that light up and some that don't you meet the criteria.

I'm not sure why, but some docs wait until there is evidence of a second attack before they start DMD therapy. In my case that would have taken more than 10 years! Who knows where I'd be MS wise, if they had diagnosed me way back when :-)

Kyle

[aspen2]

I thought on the cspine you would want to see lesions in the spinal column /nerves to support an ms diagnosis.  I just received my cspine results and I have hyperintensities (lesions) on C1 and C5 -- but because they are on the bone they are presumed to be hemangiomas (according to the radioligist).  Supposedly I have nothing ms-y in my cspine results.

I have one more doctor's appointment, then I'm done.  Seriously.  I'm tired of this.

[MommyofNatTyZach]

So sorry you have to wait again. I have noticed that is the worst part so far of this long diagnosing process the waiting... My last neuro apt the had to reschedule as well. I then went and it wasn't as great as I expected.

Can you request a new nurse? I have my mri on spine this Thursday. My dr said if I have a lesion then it will be ms because it is not normal to have lesions on the spine.... So we will see!

[Cann1980]

Update:::

So the ms nurse is not my BFF .. She is ok but she did not meet with me before seeing my neuro again and did not find any additional info for me like I thought she was going to. In fact I had to call her the next week too she did not even call me back :( disappointing....


Had a call last week from neuro office... Changed appt to aug 14 ugh ... Disappointing...

Had MRI of c spine on Sunday ... Sneek peek shows 1 smaller white matter lesion 5 mm on c 2/3 and a herniated disc on c 5/6

So there goes .... The proof the doc wanted I guess... Now to wait another 3 weeks.... Disappointing .....

[Cann1980]

Thank you! I don't know if I would be as "ok" with all of this without you all.

[SarahL2491]

am so proud of you for forging ahead!  By all means keep us posted, we all learn from each other!

[rendean]

Sorry for your diagnosis but glad you have answers and a treatment plan in place!!!!  The rollser coaster of emotions that follow from being happy to have "bad news" to what now? to disbelief and back to relief you're getting treatment will come.

And, we will be here for ALL of it! Just ask or vent away and we will do our best to help you out or put your mind at ease.

Take care!!!

Hugs,
Ren

[Cann1980]

The eye doc is a keeper!!! I owe him a lot for being so kind and full of knowledge ... And admitting to not knowing all but trying to explain is a plus in my books!! I will alway have him as a doctor now so that is reassuring.
But I have graduated from once a week to monthly and now every 3 months!! Yahoo!! :)

[Cann1980]

Ok update:

MRI booked july21 back to neuro booked aug 1

I called to book the nurse after aug 1 like I thought... She called me back tonight at home!!!! She said she will be there aug 1 as well before durin and after seeing neuro.. They work hand in hand :) *** ding ding ding*** the missing link is here!!!!! :) she is wonderful!!!

She asked where I stand and I told her about the doc saying clinically ms... She is going to speak with him tomorrow to discuss the next steps and starting dmd etc.. An clarify his statement ... She figures that he meant "clinically speaking I have ms" not CIS ... That's makes more sense.
My MRI of spine would still make it definite if lesions but either way having lhermitis sign and ON makes it ms.

She is going to speak with him tomorrow and call me back tomorrow night or beginning if next week. ... Wow I feel better :)

What an awful feeling ... Being happy for bad news ... I think I am glad for the clarity... Can't wait to talk to her again!!  :)
Until then... :)

[Lulu54]

That eye doc sounds like a keeper - good luck with this next phase of testing -  get that old school neuro moving if you can.
Good for you to keep that positive attitude - that's the best weapon you have.

[Cann1980]

Thank guitar_grl ... I completely agree I should be too!!! I wish I had been more sure of myself and spoke up yesterday... I second guessed what I thought and was scared maybe I did not read tey were approved at this stage in Canada... So I kept my mouth shut and gave up.. Boo me.
I have been meaning to introduce myself to you on your post. So .... hi!!! :)



I went to eye doctor today who is young (doctor eye doogie... I call him) he admitted that he was not fully informees himself on the ms protocols but he did agree my ms doc is a little old school and not very explanatory. He said he would read his report on me and he said himself that he is sure he has his plan for me .. He just does not take the time to explain to the patient.... I felt a bit better for that. My eye doc also said if I am not happy he will refer me to whomever I want .. Including to Halifax to the specialist who takes care of all eastern Canada. I have someone on my side !!! :)

I don't think I will be moths and months going through this process either.. I am guessing I will get the MRI within the next couple if weeks.


So today after all this i am thankful ...
Thankful I have at least a clinical diagnosis so I know where I stand
Thankful for an MRI of my spine coming
Thankful for my eye doc who cares even though it is not his area.. I go to him for ON
And finally thankful I will know how to advocate for myself bc of all of you!!!
Thanks!!

[Guitar_grrrl]

My neuro is "Old School", too.  He'll be 80 this Summer!  He's still a good clinician, though, and keeps up on his reading.

I think you should definitely be on a DMD!  I like DV's suggestion of printing the MS Society's page on CIS and DMDs.  Wake up, Doc!

[Cann1980]

Oh thank you everyone!! You all do not know how much I appreciate you all! Well actually you probably do know ... But just the same I thank you again! :)

Yes I do think he meant CIS... And he did say no treatment at this stage but I think he believes I will have proof of a second symptom .. I will not fight for meds at the moment until I see the outcome.

He is a specialist in my province he treats about 50/75% of all ms patients here..... Looking his name on the ms website he is top dog.. And recommeneded to me from others. So I am going with his judgement for now... He is old school but I am not and I will print that page and fight if I have to.

Sarah... Yes by me saying my brain is full means I have lesions... Lol.. I am pretty laid back personality and tend to make fun of myself at times and that did not comes across correctly,.. I call it Swiss cheese head too... Rofl..
I should not laugh... But it is better than stress. :)

Lulu... I completely agree with everything you said... And I will not allow myself to wait for another attack before treatment. I do believe he is looking for a previous 2 nd symptom to diagnose definite ms ... He literally looked though my list and i think picked from that what he thinks will show up as proof... Do you think that sounds correct? He was so hard to read....

Cubbiesfan... Thx.. :) I am not disappointed though.. I am happy he is looking for more instead of just sending me on my way.

Double vision.... Thank you! Funny true story.. He told me to only find information on ms society Canada as the rest is hogwash... Haha..
When I got home and wrote this post I then went directly to ms Canada website bc I could have sworn I read this but I was scared it was a different website and did not want to start something I could not support... I will be printing this. :)
I will go for the spinal MRI .. Because it will give at least a baseline too right? And go from there... I will fight.. I truly believe if it is clear he knows there is medicine for me.. He has to know.. He just did not want to get into it with me today I am guessing.

He also referred me to a nurse to go over everything... They spend the time explaining what specialists do not have time for... I am going to call them the bad news nurses.. Cancer patients get referred to them too.
He said to hold off until after MRI too bc I will have the whole picture then.
I asked him why I was going to her.. He said because I have a lot to learn and know... I felt like saying I am good I have friends and support on medhelp. :)

Thank you all!! I feel so much better... :)

[doublevision1]

Hey Cann,

look to the MS Society of Canada's website:

http://mssociety.ca/en/treatments/indications.htm  

for indications of Avonex, Betaseron, Copaxone, Extavia and Rebif.

Never mind, I'll save you the trouble :)

"For the treatment of people at risk of developing clinically definite MS (CDMS) so as to delay the onset of CDMS...."

Print, bring to neuro, request treatment and if he's unwilling, request referral for second opinion.  Or do the spinal cord MRI, whichever you can do the soonest.  But if MRI is neg, push treatment if that's what you want.  It's supported by scientific research, Health Canada AND the MS Society, what more does he need?

[cubbiesfan918]

Oh Cann. I was hoping you'd receive the answers you deserve.

[Lulu54]

I'm thinking that perhaps he was talking about CIS - clinically isolated syndrom - which is viewed as the first round of MS symptoms that are likely to progress into clinicially definite MS.   The FDA recognizes CIS and advises that patients begin treatment with a CIS diagnosis.  He may be just old school enough that you need a younger doc with up to date information, because he doesn't seem to have it.

It sounds like he is wanting to wait for treatment until you have a second attack, which is a horrible way to be proactive about a disabling disease.  

I'm no doctor or even a medical person, but it sure sounds like you  have the signs of MS and need to be seen by an MS specialist.  We can like these old-school docs a lot and still not get good medical care.

Good luck with the MRI - you will be fine.  I would insist on the blood work and not give in to an LP unless you are with a new doctor who will understand the test results on current information and not old stuff.

~Laura

[SarahL2491]

you say your brain is full.....does this mean you have lesions there?

don't worry too much about the MRI, they can give you something to relax you beforehand; I have to take something myself.

they will only MRI your thorasic and cervical area, there are no lelsions to see in the lumbar area.........is best if they do it with contrast......that should give you enough to get a diagnosis.

keep us posted and relax.......know that's easy to say but we've all been there done that