I caved on the 'No more testing....'

[Momzilla]

I went to see my neuro today to follow up on the weakness I've been having.  He gave me his last appointment of the day, at 5:45.  He spent 45 minutes with me, which is more than he usually does.  He tested my legs, and said, as he always does, "Good and strong."  Pth.

He tested my arms.  "Good and strong."  Pth!  My left is decidedly weaker. (I decided)  

I was very dizzy when I laid on the exam table.  He gave me a minute to adjust.  He is very kind.  Every time he tested a limb or appendage, he always said, "Good."  Bluckh.  I was getting annoyed.  He sat me up quickly and looked at my eyes.  He'd made me dizzy on purpose and apologized.  Vertigo, he said.  Positional.  They call it benign, but it doesn't feel like it, right? (He thought he was going to win me over. I chuckled politely.)  

He checked my tremor, which he never remembers about.  It is getting better.  Essential.  He pricked me with the pin.  I AM better, to my surprise.  Even on my left side.  He remembered that I couldn't feel anything on my left last week.  At least he remembered something!

Then he looked at EVERY page of my chart.  At least once.  And asked me questions.  My chart included other docs' previous charts.  Now, it seemed, we were getting somewhere.  He told me I wasn't going home until we went through everything.  We visited the migraine issue.  No dice.  Doesn't fit.  MS?  Maybe, but he can't say MS right now mainly because of my MRIs and LPs.  He DOES want the complete LP results sent to him, which he does not have.  He ordered those.  (I know they are all normal.)  He said he cannot say with certainty that next year I won't suddenly have lesions show up, but for now, NO MS.  (I can live with that answer.)

He then said he wants to do a CT angiogram.  It's not that invasive, and he really wants to be sure about my brain arteries.  He also ordered blood work I've not had done before:

Melas genetic testing, Lupus anticoagulant, anti cardio lipin ab, VDRL (had that done -- syphilis), anti-thrombin III, prothrombin II gene, protein C & S level, PTT, Factor V Leiden, and TSH.  Some I've had done, like the thyroid and others.  Some sound odd.  He sounded like he was handing me the Holy Grail.

I asked if he thought it was degenerative.  He said he wasn't sure.  He said, "Your left leg is weak at the hip (Good and strong?).  It is weak just about every time you have come in.  When you're here in the morning it seems a little better.  But at the end of the day, it's even weaker."  Maybe he does remember me.  I think the steroids got you over the hump of whatever this is.  I think you're going to get over this whether I treat you or not now.  I'm glad we didn't have to put you on IV steroids.  You'd probably FEEL better if we had.  You'd be over it by now.  But I'm glad the small dose helped you stay out of the hospital.  Is it denegrative?  I don't know.  I think your leg may always be weak.  I'm not sure if it's going to get weaker.  I don't see it getting weaker yet.  Give me some time to think about this and figure out why this keeps happening.

I asked if, because it's at the hip, did he think it was a joint problem.  No.  It's not your joints.  And he got up and changed the subject. That's when he walked me over to the assistant who wrote out my tests.

So, after promising my internist and myself NO MORE TESTING until after the new year, here I go again......

Feel well, everyone!

Fickle Zickle*

[Fluffysmom]

I just looked up the difference between the two angiograms, and I can't imagine why my doc wouldn't want to try the CT angiogram on me; it shows the very small (1 - 2 mm) arteries, and is quick and noninvasive!  Maybe I'll ask her.  I think it would have been a better choice than the MRA.

I looked up basilar artery vasculitis, and I think it means "a reason to do this test".  No, really; the first article was from Japan and totally crossed my eyes, then the next one said that it can include a wide range of whatever.  I'm not real sharrp right now, but I'm glad to see that this kind of angio is short and sweet.

It sounds like your hubby is sweet and funny, too, just like you.

Thanks, I'll try to feel better this weekend. :o)  Then worse on Wednesday...

Kathy

[Momzilla]

Yes, Thanks for the brain cells!  He got them just in time!

What I didn't want was an MRI angiogram.  That requires a catheter through the groin, apparently, and up through to the head.  This is just a shorter CT scan with just an Iodine injection (no catheter) and a short dose of radiation, I suspect.  CTs are usually so brief.  

I had promised myself no more radiation, but my doc seems to wan to get this done, even after having had the MRA and MRV done in May.  Oy!  So, I will comply.  We did go over the fact that these tests were normal.  The Dx on the script is "Basilar artery vasculitis."  Makes no sense.  At least he's thinking?  I don't know.... I wish I even knew how to tell if he was thinking along the right track.

After this round, I hang up my hat.  I just don't think there is anything I haven't been tested for.

Love-n-Hugs back.  Hope you feel better this weekend, Girl!

Zil*  

[Fluffysmom]

Hey, he did get those brain cells I sent; he remembered you!  

I'm glad you caved, too.  Quite a list of tests; I know you didn't really want the angio, but I'm glad to know that it's short and you won't be glowing for too long.

My neuro, who says she thinks I have small vessel ischemic disease, won't order the angio.  Says it's too invasive; I think she doesn't want to disprove her theory and have to look for somehting else!  I think i remember readign that the angio is the best way to visualize the smaller vessels.  Instead, she sent me for a MRA of my head and neck, which was just lovely in it's clean normalcy.

Hope your results bring a clearer picture of what the heck IS going on with you.

Love-n-hugs,
Kathy

[Momzilla]

Hi, Friends!

I appreciate all your support.  I truly do.  It's good to hear from each one of you.  Some new friends!  And Sheila -- good to see you!  Bio -- you know my pain.

It's easy to get down on my doctor.  It looks like he's not looking at my whole picture.  Maybe he's not.  This morning I feel hopeful.  Although I was a bit disappointed that he will not consider MS at this point, I cannot really fault him for it.  I do not have ONE lesion.  My LPs have been normal.  My SSEP was normal.  AND, he did leave the possibility open, in my thinking, by saying that next year I may show up with a lesion on MRI.  He does seem to think my symptoms match.

I had a great lot of fun last night with my husband and my left leg weakness.  Hubby made dinner last night while I was at the doc's, and I made a huge deal that it was because of my leg weakness which will probably never go away.  Woe is me... My leg has been weak each time my doc has seen me, and I will probably ALWAYS have this weakness....Hubby played along by moving my stool around the house for me to sit at any given moment, lest I fall.  

It was gratifying in a deep way to me to have that weakness acknowledged by my doctor, whom I didn't think even noticed with his "good  and strong" each time he tested.  For him to say my exam is "disgustingly normal" (earlier this year) is now a bit disgusting to me.  I know my reflexes are abnormal.  Every other doc who tests me can barely keep from saying, WOW.  And now I am sure he has just been placating me.  Patting me on the knee in a fatherly way, Everything is fine and dandy, young missy.

So, I will have the testing.  I don't want more radiation.  The CT is short.  I will start glowing soon and if anyone wants to visit me (T-Lynn) you'll surely be able to see me from my window.  The MELAS testing seems like quite a stretch, but is interesting, anyway.  Not sure if it's covered by insurance.  Will see.  It can be expensive to be compliant. Slightlybroken-- I think you're right, that he wants to check for any kind of blockage/vessel flow kinds of things.  Sounds like fun, listening to your story!

Thanks, again, to everyone who responded.  You guys are great!  Nice to meet you, Zeta!  Thanks, LL and Lulu!

SL -- What the heck is rabbit ash?  You crack me up, Jersey Girl!

Have a great beach trip, Elaine!

Love to all!

Zilla*

[yorkieville]

Hi, Zilla.

I'm glad you 'caved'. You need a diagnosis, Limbo Land is not a nice place to live. I have been living here far too long.

I agree, your Neuro sounds confused, but you are making him think.

Hugs,
Sheila

[Wobbly]

Your Neuro sounds as confused as mine is...good luck with more testing...I'm sure I'll be having more too...take care

Let us know what's up next...

Hugs
wobbly
LL

[biowham]

Good for you for caving. That neuro's about as confusing as all of the ones I've had.

Bio

[Cre8_it]

My problem over the years has been the lack of tests.  I think that it's good that you are going through with them, even though your probably sick of tests.  At least then you can say "I've done what you asked me to do", "Now what do you think is the problem?"

Hoping all goes well for you!

Zeta

[Lulu54]

Zilla,
So you caved huh? Good for you - I really want you dxd and on treatment, even if the problem is some non-MS thing.

Be well, Lulu

[monotreme]

Well, Zill, it can't hurt to get the tests. Why fight him on it anyway?  This makes you look like a compliant patient too.  So if and when you do have another "episode", he can't blame it on the fact that you didn't agree to more tests!!

I still am haunted by how similar you are to Craig.  When he started with the pituitary disease, his brain MRI's were normal.  Then brain MRI's every year for three years, and on the third year, there were lesions and atrophy, all of a sudden.  But he also had leg weakness and loss of motor function too.

Good Luck with the tests.  I think your neuro is listening, but very reluctant to give a MS diagnosis.  I'd like to see what Quix thinks.

Have a restful weekend.  I am off to the beach.  I have talked Craig into staying and taking care of the dogs at the beach house so I can do things by myself or with just the kids.  And I am insisting on it!!!!

Elaine

[slightlybroken]

I would go ahead and get them done. I've had some of these same blood test. Some of them have to do with clotting risk. I could look them up if you like. He might be repeating the VDRL because sometimes you can get a positive result (of course it's a false positive if it's been negative before) when you have Lupus. I came across this fact when researching blood work for Lupus.

Hang in there. At least your making his brain think. Maybe he'll start to think outside that box now.

[sllowe]

What in the rabbit ash.... what the monkey ......I just don't understand some of his responses,.... but what the (fill in the word) just go ahead and do the tests....git r' done.

Can't believe some of these were not run in the 1st place.  Pth!

Here w/ya Mama Z!
-Shell