Back from home neuro appt

Turns out, he really wanted a last-appt-of-the-day appt to spend a lot of time, so this appt was too short to do much. The office was very rushed (it always is; they're very busy). He gave me my letter from Big Neuro and let me read it and made me a copy. He tested me, remarked that my reflexes were "pathological," said, "That's definitely a myelopathy" and that I seemed worse than when he last saw me in February in terms of gait, etc.. He doesn't seem to think I'm weak much, whereas Big Neuro thought I was on the right. I think I am, too.

He mentioned MS several times during the appt, saying things like "could be slow MS" and "could be a so-far mild course of MS" and "That's MS" when we talked about the spinal lesions. The office notes from the home neuro say throughout for the MRI results "cannot rule out MS" and "possibly also an MS plaque" (that one was about the tspine). We talked a bit more, and he wrote me out Rx for physical therapy at a gait and balance center, for Baclofen, and for something else I can't remember. I asked him about a recent "flare" of Lhermitte's that had come on, and he also asked me to consider solumedrol injections. Also, on my left arm, the bicep reflex is almost absent? Or a 1? But my triceps reflex is 3? What does that mean? He commented on it, but I thought that sometimes, the biceps could be barely perceptible under normal conditions.

So...I'm to go back on the 19th for the "long" end-of-day appt and to bring my MRI films from my most recent MRI. He really really likes to look at his own films. He's going to see that tspine thing and my brain this time, is my bet, and he's going to finally call the duck a duck. He came very close to that several times today as it was, but because he wanted a different sort of appt, he didn't say it flat out. I'm expecting some more definitive commentary on the 19th. We got pretty matter of fact about things today, including discussing openly the fact that there's not much to explain a posterior tspine demyelinating plaque except MS.

My Big Neuro's letter sums up by saying, "Because of the family history of PPMS and a questionable demyelinating plaque in T4, we cannot rule out MS, but this diagnosis is not definitive at this time."

Honestly, my only real concern going in--and it wasn't a very realistic one, given my tspine imaging--was that I'd go in there and they'd say, "Oh, you're just crazy." I think that really burned me psychically to have that suggested to me last year, and now it's kind of a lingering fear. I was all ready to say, "Well, then I need a neuropsych eval," but it never came up. Maybe NOW I AM a bit crazy about it. Is it possible to somaticize somaticizing?

I do have a couple of questions that I'm hoping Quix (or any expert on blood tests) might be able to answer.

On my lab results, the SPEP for alpha 2 was increased. The lab made some reference to "acute phase response" and diabetes. I'm not diabetic and have otherwise completely normal bloods (borderline high albumin at 5?). What is up with that?

Thanks, and that's it!
Bio

[biowham]

bump

[Fluffysmom]

Quack quack.  Looks like a duck to me!

I think a reflex of 3 is considered "brisk", but not really abnormal.

You could let the CRAZY go by requesting a neuro-psych eval. yourself; I think it would show how completly sane and bright and sharp your truly are.  Might release those lingering self-doubts.  Or just see a regular therapist; I did a while back, and she helped me see that I'm actually dealing quite well with all that life is handing me.

So, sounds like on the 19th you might actually get a diagnosis. Sigh.  

I hope the gait and balance PT is helpful, Baclofen, too.

Kathy

[biowham]

Hi, Kathy--

Yes, 3 can be normal--I guess what I was wondering was why he commented emphatically on the 1 bicep/3 tricep reflex. I googled around (uh-oh) and think I found my answer, though.

I'm not really sure why he gave me the Baclofen--I don't really have spasms, but he said try it at night and "see if it helps," and if it does, try it in the day, too. Any insights into Baclofen would also be helpful.

Thanks,
Bio

[biowham]

Hello? Is this thing on? I seem fated never to receive replies (but Kathy this time. Thanks, Kathy!). Is it my personality? My looks? My devastating wit and charm?

For what it's worth, I just managed to read the line at the top of Big Neuro's first page where it says, "DISCHARGE DIAGNOSIS" in giant letters. It says, "Myelopathy, possibly secondary to multiple sclerosis."

And...waaaaaah!

Bio

[steph74]

I don't have any feedback on the blood tests, but there's a great website, lab tests on line, or something like that, that gives a lot of detailed info about many lab results.

Also, it sounds like you've got a really thorough and careful neuro who will be calling a duck a duck very soon.  I don't understand why they have to drag these things out, but it sounds like maybe you can get started on DMDs soon.  

Stephanie

[Nancy T]

If it's MS, it doesn't sound to me like your symptoms are all that "slow" or "mild"! (Gait problems, e.g., don't seem "mild.")

I think those of us who have ever had "crazy" (or some variant thereof) thrown at us ever get over the fear of that "diagnosis" returning. If you get a firm MS diagnosis, perhaps that fear will go away.

Hope the PT and Baclofen help with things, and that your next appointment is more definitive.

Nancy

[Fluffysmom]

Wouldn't Myelopathy, secondary to multiple sclerosis, still give you a diagnosis of multiple sclerosis?  Ooops, I just saw the possibly; sorry.

Still, he may just have written that because he wanted to have that long appointment with you before he takes the "possibly" out.

I looked through my old labs, and they list the normal range for albumin as 3.5 - 5, so that would put you at the high end of normal.  Your lab could use a little different range.  
I have no idea about the other thing you mentioned; don't think I've ever been tested for it.

The other day when I wasn't gettting any replies, my roommate told me that people like to hear positive news, and then the replies started coming in.  Sometimes I think they come in waves.

Hang in there.

Kathy

[biowham]

Thanks, Kathy. I try not to take it personally--after all, this is a virtual world--but I was hoping for some responses, comments, etc. The posting/response rhythm can be odd. My "cane" post got a ton of responses, but I think it's all related to experience and what people can offer when they respond. I know that for my part, if I don't have anything to offer to help, sometimes I just don't post anything at all. It seems like it wouldn't be that much help to come on all the time and post, "Well, I don't know, but I feel for you!" all the time. ;) But I think that probably helps in its way, too.

Bio

[Heartshome]

Hi, I wish I had something to offer in the way of information, but I don't. I do hope that you get an answer soon. It sounds like your doctor is very thoughtful and taking a serious look at your test results. The end-of-the-day appointment is a great idea, that way he/she can answer all your questions. My guess is that you will be diagnosed, but that's just a gut feeling based on what you mentioned above.

I too am wondering why he'd say you have possible "slow MS' if you have the gait/balance issues you mentioned. I have been told that I likely have "Slow MS" as well. I really don't know what that means, other than my tests are all normal, but everything else has been ruled out and my signs/symptoms seem to point in that direction.

I always feel like my posts get no response as well. I guess because I am undiagnosed and am not always running to the doctor for testing, as I've pretty well given up on all that for now. But I wanted you to know that you've been heard.

I hope that whatever you find out, that you are okay with it and that you'll be feeling better soon. You will be in my prayers.

[shoshin]

I think you're right that people often only post when they have something to say or it's something they relate to for some reason. It sometimes seems pretty hit and miss what kind of replies you get. Or it's just timing--who looks at the post when it's still on the top page.

I don't have much to add. Sounds like you're wishy-washing your way to a dx. Maybe.

I am on baclofen and I don't particularly have spasms (except during my ill-fated reflexology session). It's also supposed to help with the stiffness from spasticity and it has helped me walk better. I seem to have more control over my legs when they're not so stiff. I think I expend less energy walking and walk in a somewhat straighter line. It has not so much made my legs feel better.

I think they want you to start baclofen at night because it can make you sleepy. Also, I guess if you were having spasms at night it would be hard to sleep. I find it more helpful during the day myself.

sho

[Lulu54]

good evening.  I'm juggling tons of issues right now but saw your request and had to stop and suggest that you look at labtestsonline.org,  like someone else already mentioned.  You can actually submit a question and a real live lab scientist (lots of initials behind their names) will get back to you with an answer. I have used them and so have Kathy - pretty great group of people.  

It sounds like the 19th will be a pretty big day for you - you really have done an excellent job researching and understanding this disease so not much will come as a surprise to you except perhaps how emotional this all can be.  

I know what you mean about lack of responses sometimes.  Its really hard to figure what it is that catches our eye here....  And I think my role here a lot of the time is to say, "I sure wish I could help with some answers."

as always,
Lu

[biowham]

Thanks, y'all. I will check out the lab test site. I don't mean to sound like a whiner about the responses--it's just getting so close now, and there aren't too many people in the world besides folks here who are gonna "get" how that feels.

Sho (or anyone else)--is stiffness different from spasms? I am VERY stiff, especially when I try to start moving after being still. I think he wrote that script out after he saw me get up from a chair. Is Baclofen something for stiffness, too? And is stiffness different from spasms?

Gracias,
Bio

[Karen99]

Maybe I can help a little bit here.  Baclofen is generally prescribed for spasticity.  Sometimes neuro's suspect spasticity if there is pain or stiffness. I was given a trial of Baclofen for pain in the legs, more like fatigue in the legs.    I am stiff too when I go from sitting to standing and it gets worse as the day goes on.  The Baclofen didn't help.  I think my stiffness is just a sign of getting older (just a tad!)  There is no arthritis or osteoarthritis.

I have observed that a lot of people have stiffness when standing from a sitting position who are a lot younger than me.  

I think there is a Health Page here that addresses stiffness.  Or maybe Quix wrote about it recently.  I'll see if I can find it for you.

[rendean]

Sorry for the lack of feedback but I feel like you do , if I don't have something beside "i'm sorry" to say I usually don't post. I did see today that theh discharge diagnosis and you're inching closer to that elusive dx.

As for the Baclofen . The renowned MS specialist I was seeing before my referral to my awesome academic neuro handed me a script for Baclofen. It did NOTHING for ME for the muscle spasms so local neuro wrote for Klonopin. Recent visit with int. med/nephrologist saw it on my list of PRN meds and told me not to take due to multiple interactions (I'm on several anti-hypertensives, etc). Academic doc says it works for about 60% of his patients.

My 2 cents worth,
Ren

[slightlybroken]

It's late right now and I'm going to bed soon. When I have a chance, I'll answer tomorrow about the blood test if you don't get an answer sooner.


It does sound like that duck is finally getting called a duck...It's about time!

Take Care

[Quixotic1]

I, too am sorry.  I have been coughing up coagulated pea-soup this week and feel really peaked.  I read your post and had thoughts, but felt the pressure all week to talk to newbies and ....and....and.....the road to h ell...it seems.

I'm out of it tonight, but I did have a comment on the weakness thing.  There was an article in the latest issue from the Consortium of MS Centers on the disparity between percieved deterioration (like with weakness) between the patient and their neurologists.  Patients report things and their docs say the exam is "normal" or "unchanged."  this actually points out the limitations in the doc's exam - their large margin of error so to speak.  Different docs have different abilities to perceive weakness and for better or for worse our weakness does change (at least mine does) even during the day.  I think my neuro may have seen that article (which has the world's most unintelligible summary) as this last visit he said, as he always does, "There is no change in exam."  But then he added, "At least to my ability to ascertain it."!!!  He achowledged that his exam might not show the whole truth!!!

In my experience it is more common for the triceps to be quiet than the biceps.  But things are what they are.  It shows that your reflexes vary from point to point - consistent with a myelopathy.

SSEP, alpha 2 protein can be seen as an acute phase reactant - goes up in acute inflammation like the Sed Rate or the CRP - though VERY nonspecific.

Your doc is saying the "M" word - repeatedly.  He has been so phobic about that kind of stuff - short of the "C" word, that this is real progress.  I think you're close.  I wonder if he just doesn't have enough cajones to come out and say "MS" and "you" in the same sentence.  You know how I feel about your still being undiagnosed!  Come ON, now, Doc!!!  Do we have to brand her?

And I agree totally with Kathy that these neuros that come up with the words "benign, mild, slow, pre-, almost", in referring to MS have never had to drag a leg or learn to grip their pen differently to write, or try to think  or walk through a vat of molasses in January!  What nonsense!  the only MS that I would deem in a mild state is one where a person has a little patch of numbness somewhere!!  Still, if he is saying the word - and putting in the context of YOUR neuro exam and writing it on YOUR medical lab papers then this numbnutz may be getting somewhere.

Why is it that you still see him?

I didn't mean to ignore you or anyone.  We veterans need as much attention as newbies, that is definitely sure.  I cherish you on the forum.

There is only one criterion left.  According to the departed Dr. K, you could call it a duck also if it "smelled (??) like a duck."  Now how many neuros in the US really know what ducks smell like, I wonder.

Quizzle Tricks

[sllowe]

I'm rarely around at night....sorry :(  thought I know you were just feeling anxious...

Has little neuro said anything different than he has in the past?  Why do you have to wait - only for the MRIs results? Am I just forgetting?

I don't understand the baclofen script either.  I'm on it, but wouldn't be if I was spasmless......

I do think something is coming though Bio, since you are scheduled to go back in 2 weeks.  Otherwise I believe it would of been 2-3 months...

ttys,
shell

[slightlybroken]

Hi,

I'm back from running this morning. Sorry it took me so long. The SPEP test is what I refer to as a generic test. It test for certain proteins in the blood. An increase in the Alpha-2 could indicate problems with the kidneys like diabetes but they would have to confirm with other test (glucose tolerance test...etc). One abnormal test isn't indicative of anything unless you have other test confirming that DX.

As far as the Baclofen, I have it for the spasms/spasticity. Sometimes when I'm at my worse, the muscles will not move very well. I guess you could compare it to a type of stiffness but it does go beyond that because the stiffness doesn't go away or you can't work it out by moving. The more you try the harder the muscle fights against the movement. I guess if it was plain old stiffness, it might be hard at first to move, but once you work at the muscle, moving it around a bit, the stiffness decreases.

Maybe your doctor thinks it's spasticity and not stiffness. Baclofen works some days for me and not on other days. I know that I can't function without it. I tried and I didn't walk very good so I really didn't realize how much it did help.

Take Care :)

[biowham]

Wow, you guys are really providing some positive reinforcement for whining here. I need to try that more often. ;-)

Thanks to everyone for the insights and info. I'm going to try the Bac because I've got spasms in my hands. Whatever these things are, they make my thumb and pinkie fingers move around by themselves. And I'm VERY stiff, like "walk like someone who's 90 years old" stiff. We'll see. I'll report back on its effects. He did say that I don't seem to have any spasticity in my legs, which seems true to me (?).

Quix, I'm sticking with him because he's an MS person AND because he's really taken a lot of time to go through information and because he's the one who sent me to Big Neuro, or "The Mountain," as he says. I think he's reluctant and I'm experiencing this because it's NOT RRMS, which comes on in those episodes that sometimes can be kind of dramatic. This is just a slow, progressive, debilitating burn. I still trust him now, so we'll see what he says on the 19th.

Thanks Ess and Quixon the blood test info. I was wondering if the elevated alpha 2 might have anything to do with my chronic pyuria (or vice versa, actually). CRP and SED are fine. I'm not worried about it, but it was bizarre to have the word "diabetes" tossed out since I'm nowhere near diabetic.

I also think the same as you, Quix, about the weakness. The Mountain gave me the BEST neuro exam I've ever had, thorough, repetitive, he figured out my slow auditory processing and took that into account...and he himself was VERY strong. I trust his results over anyone else's in terms of weakness. But I also do have days where I don't feel it that much and days when it overwhelms me. Heat especially affects it.

Thanks again to all for your insights, comments, and support. I'm feeling edgy in some ways--will it come to a conclusion on the 19th?--and not edgy in others--I *know* and he *knows* what's going on--and it is, as everyone here knows, such a roller coaster ride.

Bio

[missy142]

Biowham,

I found this post that Quix had written, there was a pretty long thread in response to someones question and lead to some of the spasm/spasticity stuff as follows:


by Quixotic1


Mar 19, 2009 10:05PM
I think there is some confusion about the difference between spasms and spasticity.

The two do not always mean the same thing.

Spasms are sudden and often severe contractions of a muscle or group of muscles.  When a muscle spasms it tightens into a painful knot that is difficult to work out.

Spasticity is an over-activity of a muscles stretch receptors, such that any attempt to lengthen that muscle is met with a paradoxical tightening.  The spasticity is always present, and the muscle may feel stiff when you try to use it.  Spasticity can vary in intensity and is often worse when the person is otherwise in pain or distress.

Spasms can frequently happen in muscles that are spastic also, but I believe they can occur without underlying spasticity also.

This difference may seem to be one and the same, so if I am not clear please ask questions.

Quix


Also from my nursing drug book typed this out for you:  Is indicated for spasticity in multiple sclerosis; spinal cord injury.  This is how it works:

"Hyperpolarizes fibers to reduce impulse transmission.  Appears to reduce transmission of impulses from the spinal cord to  skeletal muscle, thus decreasing the frequency and amplitude of muscle spasms in patients with spinal cord lesions."

Um just on a note about  Klonopin, I take a small dose of klonopin qhs and I have heard people with RLS symptoms use it as also ( I know thats not what ur talking about),  it is mutifunctional, however you probably know its a benzo so it will be addictive when taken regularly.

Also some of the adverse effects may be undesirable, if you happen to get them, may be some of the very things ur trying to get rid of.  You should look that up. This often happens with meds not in most people but some people will experience adverse reactions.

Hope some of this helps maybe:o)
missy

[shoshin]

The way I perceive the stiffness is mostly as a sense of pressure or tightness around my legs (or wherever--I have it my feet, too, and also my hands and even my arms a little bit). It's sort of like my skin's too tight. Also, I don't feel like I bend my knees as much as I should when I walk. I walk kind of straight-legged. I don't know if it's like that for everyone.

When I was having the reflexology, when my friend put pressure on different places on my foot, I would get these sudden, intense, unpleasant, but brief, contractions in my leg, like my whole leg would just seize up. It was short, but a lot more unpleasant than the stiffness (which I can tune out a lot of the time). I think those were spasms (so far as I understand it).

I think baclofen is used for both stiffness/spasticity and spasms because it is a muscle relaxant and both those things are caused by muscles contracting when they shouldn't.

FWIW, I am stiffer, too, after being still for a while. Stretching is also supposed to be helpful for the stiffness, although I haven't found it terribly so.

Hope this helps somewhat.

sho