Do I Have Enough Evidence?

[slightlybroken]

OK...This is the just of it. I'll try to make it short and sweet and to the point. My main question is...Do I have enough evidence to make a diagnosis of something. Put your thinking caps on..please.

4-5 lesions (2-3mm in size) in the centrum semiovale of the white matter of the brain. 2 radiologist and 1 internist believes it points to early demyelinating disease. Neuros believe lesions are nonspecific. Can these lesions be considered as evidence or do they have to change before the doctors can use them? I did have a clean MRI back in 1998.

1 c-spine lesion. I don't know the size but I do know that it has showed up in two different MRI  strength machines (0.7T and 1.5T) in the exact same spot so it can't be an artifact.

Abnormalities on exam:
Neuro #2 hit my arm to get a reflex..it not only bounced but kept bouncing...so hyper reflexes? and saw left sided weakness on exam.
Neuor #4 saw my right hand tremor, saw that my eye lid was droopy (it resolved but reoccurs off and on), & I couldn't walk a straight line, saw left sided weakness.
Internist in the hospital saw that I could not lift my toes upward, saw left sided weakness.

I have tons of symptoms: (see my journal for full description and list)
which include left sided weakness, muscles spasms, pins & needles, numbness, double vision, lock jaw, etc....

I've had episodes (I don't like to call them flares because I don't know if it's MS) that will worsen my symptoms, add on some more symptoms and last for a week or two. In the beginning I use to return to normal but I don't do that anymore. I never "feel" like I use to. I also have a sensitivity to heat. My very first episode lasted 8 weeks.

All blood test have been normal. I did have blood clots that developed back in May of this year for unknown reasons. They have tested me for genetic reason but since I'm on Coumadin the results could give a false negative. I was babying the left leg that ended up with the blood clots because it would often "give" when walking on it but I walked on it everyday. It was also discovered later, that I had a large ovarian cyst that had grown on the left ovary so that could also be a possibility as to why I had a clot in the left leg.

I'm slightly asthmatic and I'm currently having problems with breathing. The last time I had to use an inhaler was back in fall of 2006 when I had to go to the emergency center and get a breathing treatment and a package of steroids to control it. That's pretty much it in a nut shell.

My appointment is on Halloween and I'm hoping for some answers to something. I just don't know if I have enough evidence. I know you guys/gals can not give a DX but I was just wondering if you could say if I had enough evidence according to the McDonald Criteria or does those non specific lesions don't count? Any ideas what I should ask my doctor?

[Quixotic1]

Which doctor are you going to see?  A new one?

First off - someone needs to deal with the several lesions in the brain.  At age 35 those should not be there.  Calling them "nonspecific" only says that their cause does not jump out at you from their size, location, pattern, etc.  It certainly does NOT mean they are insignificant!  Let me repeat that.  Saying they are "nonspecific" does not mean they are not important.  I get the feeling that once a doctor has called lesions "nonspecific" they, then, disregard them entirely.  No, something caused them and it wasn't age in a 35 year old with a lot of neurological problems.

The doctors should feel some urgency to understand why you have these lesions.  BTW -were they present before the major clotting stuff happened?  AND you have a clear spinal lesion it seems.  That narrows the field of disorders they look at.

This question should be put to the doctors.

Then there are the waves of symptoms that you have had over and over.  And different docotrs have seen different abnormalities on the neuro exam.  The arm (which one?) bouncing repeatedly after the reflex tap is called "clonus."  This is the most hyperreflexive you can be.  

I can only really look at it from the perspective of MS.  You have had more than 2 clear clinical episodes.  And you have evidence during them of at least two clinical lesions - the abnormalities on exam.  And all the work up for MS mimics has been negative.  That fulfills the MC criteria for MS.  So strictly you could say that you do fulfill the McDonald Criteria right now, without looking at the MRIs.

But, the MC guidelines say an MRI should be done for further evidence.  Okay, they did the MRI looking for lesions and, Lo, and Behold! you have several lesions.  It is important to realize (and apparently many neurologists don't realize) that once you fulfill the first three requirements of 2 or maore attacks, 2 or more abnomralities on exam and the mimics ruled out - then the MRI evidence does not need to be elaborate at all.  You don't need any certain number of lesions to fulfill ANYTHING.  A single lesion provides good evidence, but most experts would like to see two or more.  You have that.

From my vantage point (which is not great, being online) you have long since made all the criteria for the diagnosis of MS and then some.  The biggest catch is the huge episode of clotting you had and whether that indicates an underlying problem like Hughes Syndrome or AntiPhospholipin Syndrome or something similar.

So, who are you seeing next Friday?

Quix

[slightlybroken]

First..Thank you for responding. You always do come through for me.

I'm seeing neuro #4, Dr. S. I've seen her one other time but this is the first time I'm seeing her since the confirmation of the c-spine lesion. She had ordered a heap load of blood test for mimics, clotting factors, and another c-spine. Her main concern was to see if that c-spine lesion was there or was it an artifact like neuro #2 reported.

All the lesions I have so far have been present before the clotting stuff happened. The arm bouncing was in the left arm. It seems to prefer my left side but I have noticed recently that there is symptoms occurring on the right but they are not as severe as the left.

I'm concern about the blood issue as well and whether or not it is another symptom or something unrelated. I do know that neuro #2 & neuro #3 did blood test for clotting factors and MS mimics prior to the major episode of blood clots I had in my legs (neuro #2...it was 8 months prior, neuro #3...it was 3 weeks prior) and all the blood work was within normal ranges or negative.

Neuro #4 repeated those blood test and did a full MS mimic panel along with the hospitals where I was admitted. They were also negative but I also know that those results can be wrong that neuro #4 did because of me being on Coumadin. I think they covered most of the clotting syndromes with me several times over because of my mother having repeat DVTs and so far they have come up empty handed.

All my previous neuros did not pay attention to those non specific lesions. That's why I thought they were unimportant because they said they were no big deal. I'm not sure what neuro #4 does think of them but I know the others didn't think much. I do think she is smarter than the rest and has more experience with MS than your average general neuro so I guess I'll find out.

I'm not sure what to think or do at my next appointment. I do want to address the c-spine lesion, 2 episodes I've had ( one in Aug. and one in Oct.), and maybe address the one brought on by heat in Sept. due to the power being knock out. Other than that...I have no clue. I don't know what to ask..what to say...because I don't want to come across as a patient who has self diagnosed and already knows the answers or is educated.

Any ideas of what I should do?

[slightlybroken]

anyone? hello?

I'm sorry if I seem a little persistent but I'm really worried. I'm worried that I'm not going to get a diagnosis of any type and be stuck in limbo. I'm worried because my symptoms are changing. I don't normally complain when I'm having a rough time but I'm really having having a rough time.

I'm use to it hitting my left side but now it's hitting my right. For over a year now I'll bend my toes on the left side..and my foot will begin to shake...rhythmically up and down. Some of my toes hardly respond on the left side and my big toe often locks at the joint and doesn't bend down all the way. Yesterday, I bent my toes down on the right...my second toe hardly responded...and it started to shake just like the left foot.

My new neuro said that it was clonus when my husband described what happened and now it's in the right side as well as in the left. I just don't know what to do.

[Quixotic1]

Yes, I'm here, but I just woke up (????) and will be on later.  I'll try to come up with some things you can present to and ask of your doctor.  Hang in there!

Q

[Quixotic1]

Hey, there.  I think you just described to us the questions you want to put to the neuro.

Tell her how frightened you are of whatever this is.  Tell her that your life is stopped in its tracks and that you are very fearful of being sent on without hope of a diagnosis.  You are praying that someone will put it all together and help you understand.  You need to make sure she knows about the two waves of symptoms you had recently - and descibe the one in August and October.  And do tell her about the severe reaction you had when the house got over-heated.  Definitely tell her about the new symptoms now on the other side.

If she seems like she is going to dismiss everything, then you can ask her the harder questions.

Do you agree that just because the lesions in my brain have been called non-specific, that does not mean that they are not important?

Do you agree that I have a lesion in my spine also?

Ask her what diseases cause lesions in both the brain and the spinal cord.  And what lesions cause waves of symptoms and heat sensitivity.

For you and everyone - I have been thinking about how annoyed (threatened?) some doctors can become when we seem to know too much.  For those of you that have been many months without a diagnosis it is only natural that you would begin to look for answers yourselves.  I think you can be upfront and say just that.  The doctors have not been able to give you answers for why you are not able to do the same things you used to do.  Who wouldn't begin searching elswhere for inforamtion?

Alternatively, you can all say that you talked to a family friend who is a doctor.  That would be me (your family likes me okay, don't they?)  And that friend also has MS and is concerned that your history of attacks, of abnormalities on exam, of having lesions on the MRI (even if they are non-specific) suggests MS.  If nothing else that puts them on notice that there is a doctor in your life who is knowledgeable about MS.  They can't be as dismissive.

All of you can refer to me and things I have told you as if I told them to you (or someone else on the forum) on the phone or by email.  That is not really devious.  And it gets you around the whole "symptoms surfing" thing.

Honey, I can't guarantee that you will have answers after this next trip.  But, push for yourself, tell her how paralyzed you are with not knowing.  Ask her if all these things don't make enough to have a good idea of what is going on with you.

We'll be here the whole time.

Quix

[Lulu54]

Hi SB,
I was thinking back to some of our conversations about how you were confident this neuro is going to give you some answers... I sure hope you can regain that confidence before you see her and she lives up to your expectations.  (Quix - SB and I live about 5 miles apart and have comparared doctor names and notes!) . IF it doesn't work out, I think a trip to OSU and seeing the doctors there at the MS clinic may be in order.  I know Rite (cosmobirdy) has also had luck with neuros in this area that aren't attached to an MS clinic.    It can happen  - stay positive for your next appt. .  

Please write me PM or stay in touch here.  Enjoy the lovely fall weather cold snap - feels good, doesn't it?

Laura/Lulu

[Udkas]

Hi there,
Good luck for your appointment, I hope that they can give you some answers or at least be able to answer your questions.

For your Drs appt.
Make sure you make a list of any questions that you wish to ask so that you don't forget them, there is nothing more annoying than leaving the doctors and remembering that you should have asked something that you totally forgot.

Make sure you also have a list of symptoms/problems as well, my last visit I almost had enough  to compile a novel,  because I wanted to make sure that I didn't forget anything or leave anything out, and wanted to describe them just as they were so he at least understood totally what was happening and he thought it was a great idea as he said we are the experts in our own body and I think he is right.

If you don't understand something (like nonspecific lesions) ask what that means what it could be etc., I bet they would be asking lots of questions in the  same circumstances.

If you feel your Neuro is not answering your questions shop around until you do have one that you can relate to as it makes a huge difference to how you feel just knowing that they will listen to you even if they can't give you a diagnosis for whatever reason yet.

Don't feel embarrased that you have researched some things and are informed about neurological problems/diseases etc.  YOU HAVE EVERY RIGHT TO RESEARCH, anyone who has been having symptoms and problems that are undiagnosed and unresolved is going to do some research and let's face it sometimes we can see things that Drs may never have thought of, although they are highly trained professionals they don't always get everything right.. ..and then when you do get a Dr that finally tells you something you might understand it..

Best wishes and goodluck to you.

Cheers,
Udkas  

[slightlybroken]

Thank you all for your suggestions. I just get so worked up before an appointment. I tend to go into negative thinking about whether or not anyone can figure this all out and I don't want to search anymore for a doctor who will. My GP had to talk me into going to this doctor. I guess it's my protection mechanism...I don't expect too much from my appointment so I won't get let down.

I guess it scared me more this time because of the new symptoms popping up on the right side and I've been in so much pain lately it does tend to remind you that something needs to be addressed before something else happens. My hubby just looks at me some days and says...they need to do something and figure this out..and I comment back..yeah I know.

Thanks Again

[Quixotic1]

I have to say that I agree wholeheartedly with Ukas and the issue of our right to look for information ourselves.  I do not think we should ever be shamed for it or mocked for it by a physician.  It is true that there is a lot of garbage info out there, but there is great info too.

Balancing this is tryingI to keep the doc interested and nonadversarial.  If we can use our info to formulate questions it will be to our advantage.  

Also for SeeBee.  Along with the push for getting to the right answers, you need to ask for some symptomatic treatment for your pain and discomfort.

Quix