Todays Neuro visit, confused..sorry its long

[thornygates]

went to see neuro today. His first question was " are you still working ? "   yes
( my thought was if i wasn't i'd be living in my truck and wouldn't have the money to see him.)

my list for past 6 months:
severe back spasms on right side. went to PCP put on round of prednisone, flexeril, hydrocodone. off work for 2 weeks.
scalding pain left inside thigh  lasted 3 days
jerking left leg when standing, walking. spasms daily but also cam be severe spasm that lasts a week at a time.
right face and head crawling bugs feeling 2 days and now numbness and feels like have half a helmet on.
increased difficulty climbing 9 steps to apt.  
increased total exhaustion with walking only a very short distance.
incontinence
increased tremor

He stated this was all normal for MS. Neuro said all my symptoms now and past 4 years were consistent with clinical MS but my MRIs were minimal and he wants to get a LP. I asked about LP and how it couldn't rule out or in MS. He said taken together with everything then it could point to a diagnosis. I asked what else he was considering my problems could be from. He  said everything is in line with MS just as we have been documenting all along but I need the LP to confirm it.

I did get a script for flexeril prn with refills for spasms and ditropan for bladder spsams

I got a copy of todays notes and 2 MRI reports

todays notes bp 142/98  a little high per nurse. ahh yeah,  just had to walk forever to get to office and then walk down hall and try and stand on the scales without rattling the thing into a million parts. Take an ataxic person and make then stand on an unstable surface with feet together. that takes a lot of work even with hanging on. then walk down another hall.

alert, converses, WF in NAD, nl MS
WDWN  ( I had to google this..well developed well nourished. nice way of saying obese? LOL )
mildly tremulous (  doesn't feel so mild and don't want to think about it could get worse)
Ataxia both UE's and trunk sitting with eyes closed. at lest i didn't have to stand this time.
MSR's (  couldn't find diffiention for this )  2 - 3+ UE's/LE's
Gait wide based, ataxic with cane.  (any more wide based and i'll be doing the splits. )

soo what does he code it out as?  ataxia, tremor, and anxiety

anxiety - nooo anger, frustration, looking for answers to keep working but really I took advise here and didn't worry about pass or fail the tests. sigh - if  only he had been standing in front of me when he tested my right leg reflex.

yes i know I am impish, and sarcastic humor. gets me into trouble down here all the time.

sooo clinically i have MS and he tells me everything is because of MS but he isn't going to diagnosis it as such until he can get MRI or LP to confirm it - right?  either that or he thinks i am an anxiety ridden fat old bat thats crazy?

oh MRI's
2006  relevant history hemiparesis
1.5 tesla w/wo contrast  " there are a few bilateral very small 1 to 2 mm hyperintensities in the subcortical white matter on T2 and IR sequence which may represent benign prominent perivascular spaces. This does not have a pattern suggestive of a demyelinting process."

2009  order reason ataxia and difficulty with speech  
There are a few tiny foci of increased T2 signal in the right parietal white matter.

it says it was done on an open MRI and it was NOT.  then again my sex has changed to male on this report also. lol thanks to an ER visit - whole different story. I've tried to tell them i really haven't changed my sex but they still don't have it right. proof of the trouble one mistake can make.

Sorry this is so long. I don't fully understand all this but will google more. I thought foci and hyperintensities were not a good thing but seems normal according to reports. I know I'm not crazy and my friends says I am the most laid back person they know.  I tend to be a workaholic and am not lazy so all is normal and just take it a day at a time.

thanks for bearing with me.
TG

[thornygates]

Well i did some googleing and last year one hospital here did install a new 3T wide bore MRI machine. 1st of it's kind in TN it says. maybe its the wide bore part. surely the bigger cities in TN have 3T MRI. Of course it's at the hospital my insurance doesn't cover. :(

[COBOB]

I guess I lucked out.  Two Isolated Attacks: 1) Optic Neuritis treated with IVSM - Started the ball rolling  MRI One Lesion.  2) TN - Treated with Tegretol.
OK.  Second MRI for "evaluating questionable disease progress - Optic Neuritis"

Yep. We have progress with 3 new lesions.  Neuro appointment tomorrow at 8:30 AM.
Now the left arm pain for 10 years that seems to be Neuropathic and the two burning feet
and the fatigue/concentration issues ... well, I opted not to get into them since too many doctors see a laundry list of symptoms and it gets in the way of the diagnosis.  They go down the CFS/Fibro rat hole.  I mentioned everything above and they are all on the intake forms I filled out.  I figure my neuro knows all these things, but I "b_tch" about the major issues (Pain, falling, confusion.)  I document a lot of things through the nurses line and get scripts, etc from the PA.  I talk and document cognitive issues through my Psychiatrist who is a Cognitive Behavioral Therapist and Psychopharmacologist.  Let the doctors talk to each other.  

I'll let you know how I feel about my docs by about noon time tomorrow.  :-)


Bob

[Sumanadevii]

I guess it is possible that it could be PPMS due to one longgggggg attack.  However, it could also be a LONGGGGGGGGGG attack due to lack of treatment.  I am hoping that is what is proved in my case.  Eight years with no dx or help.  I was dx in late June of this year.  With help I am feeling stronger.  

I encourage anyone given that diagnosis that hasn't been given treatment to fight it tooth and nail.  Insist on a trial period.  I hope by June of 2011 to post saying it was the right choice.  FIGHT!  Don't sit back!!!!!

[COBOB]

Depends.  3.0 Tesla machine studies allow for 25-30% more lesions to be detected by the radiologists reading the study.   So if the saw 4 lesions on a 1.5T they might see 5 on a 3.0T.   That's what the study says.  The lesion  detected are smaller (from the improved resolution) and older (since the machine can resolve lesions with lower water levers in them.)  I'm not aware of a study that says it improves White Matter Lesion (WML) detection in Broca's Area (the brain's speech center.)  

The big difference with the 3.0 is really in the mid-brain, hind brain, spinal (less water than the supratentorial white matter) and Special Imaging (MRV, MRA, MRS and fMRI.)  In MS, the ability to identify more infratentorial and spinal lesions is a big plus.
  
Bob

[jensequitur]

You'll have better results with a higher tesla machine - a 3T MRI is preferable.  Especially with subtle problems like difficulty with speech...  

[COBOB]

Most closed machines are 1.0 or 1.5 Tesla.  Open Machines have a typical effective power between 0.5 and 0.8 Tesla.  There are new closed machines in the 3.0 Tesla range and research machines in the 5.0 and 7.0 Tesla range.  Most of the High Field (3-7 Tesla) are used for MRS (Mag Resonance Spectroscopy.)

Bob

[thornygates]

One MRI was on a 1.5 T. The report for the last one I don't know. This last report is rather lacking information. It said it was an open MRI machine and it wasn't.  They did do like one min it one machine that just did my head before moving me to the normal MRI machine. But this is also the report that states I am male and I am not. It doesn't say anything more about strength.

[jensequitur]

If you're seeing an improvement in your symptoms, then you have remitted - so it may not be as bad as you think.  

What was the strength of the MRI?

[thornygates]

Thanks Bob and Kelly
That was what I was afraid of. This started in 2006 with right leg I could only drag to walk. Thankfully it has gotten better but weak still. Now left leg is messing up but not as bad as the other leg. I am grateful to still walk even funny and difficult.

I just don't know about LP. if I stay in bed longer then 10 hours my back spasms and that's being on my side not my back.

I don't know. But thanks for your replies.

[anon07072023]

Hi TG,

I agree with Bob. If you haven't had any relapses, just a slow progression, then it may be PPMS.  According to the McDonald Criteria, if you've had insidious neurological progression for at least a year, a positive MRI, and a positive CSF (from a lumbar puncture), then I think that your doctor can say you have PPMS.

Unfortunately, DMDs have not shown to be helpful in PPMS.

Good luck,
Kelly

[COBOB]

I think the problem here is that you seem to be having one long attack spanning an extended time.  You have multiple small foci that can be seem in the MRI.  These foci are not large enough for the to determine if they have the oval characteristics of "Dawson's Finger Lesions."

Obviously you have had at least one attack (since you said CIS) and progression, have you had any remission in your symptoms?  This is important.  Without multiple attacks, and progression over one year, the DR can not diagnose RRMS.  The Dr  may now looking for OCBs or a positive VEP to help support a diagnosis of PPMS.  An Attack without remission lasting more than 12 months may push him down that diagnostic path.

Bob

[thornygates]

I forgot. I did ask neuro about CIS and DMDs. He said the insurance would not cover it without a difinitive dx of MS. I told him i knew people who were dx with CIS and were on DMDs because its important to start them early. neuro said that I had more then one clinical neurologic episode but he didn't think DMDs were appropriate in my case. He has found them not to be effective for people with similar findings as mine. that treating symptoms was most effictive and he is willing to do that but that DMD's wouldn't work for me.

not sure i understand what he isn't saying there. not sure i like it but at lest he is willing to treat symptoms if he thinks they are severe enough. i think the tremor is and he hasn't given me anything for it. he did also give me a script for dilantin for pain?

i go back in 3 months so will see.