saw neurologist - I don't know? what do you think?

[RazCarver]

Well had my appointment today. funny the change in insurance from a copay to 30% coinsurance saved me money. big smile. it was just a followup appointment am sure that will change if ( when ) I have to go because of new or increased symptom.

he had me hold out my arms and of course they shake and walk across the room a couple times.  at lest I didn't get the giggles from having to stand with feet together and closing my eyes. He asked if anything new was going on. I told him just the normal: stabing hot poker up my leg;  crawling ants and feeling like i had a fathom of the opera mask on; and gaining new humor in falling. nope everything normal. Hmmm is his reply.

LP - told him I really couldn't aford it. we talked about it and I asked what all he would be looking for. He said he would check MS protocol, as well as metabolic, infection and cells. He doesn't think the last ones would find anything. He wants the LP " for completeness".  I asked what else he thought it could be? We have had MS on the table for this whole time. With my age and level of disability we really have to think about the MS.

He understands I can't afford the test and will see me in 4 months and we will set it up then. to be sure to call for an appointment if anything new happens. went over meds and if I needed anything more or new. so he is more then willing to do treatment of symptoms.

SO, I get the impression he feels it is MS based on exam and symptoms but the MRIs aren't definitive enough and is hoping the LP will be. He did say if my decline was going any faster he would really be pushing for the LP right now. He stressed again my age and level of disability were major concern.

next month I'll be all of 51. geez he makes me feel old or something. and I still work. grated I nap at lunch and I am much slower and have had to find new ways of doing things but but but....

I don't know. what do you think about appointment or what he says?

[RazCarver]

Thanks Alex and Bob.

I think I need to go ahead and have the LP but have to work out some things 1st. like calling the insurance company or hospital to see how it is charged. Neurologist wants it done at hospital where his office is. however it is out of network so that isn't possible unless it is in the diagnostic part. if it is out patient hospital part, it will have to been done elsewhere.

oh well it is one step at a time and one day at a time. nothing I can do tonight. but did want to thank you both for sharing your wisdom and experience.

Raz

[COBOB]

I have posted this before, but my course started with left arm pain.  No big deal, I was being treated by an Ortho doc.  Kind of confusing, since the EMG on my arm only showed carpal tunnel.  No reason for pain down my ulnar forearm and 4th and 5th digit.  While waiting for an appointment with a physiatrist, I lost vision and color perception in my right eye.  Off to the optometrist & ophthalmologist (both in one practice.)  I couldn't see anything with my right eye and they couldn't see a problem with my right eye.  Off to the neuro-ophthalmologist.  Full neuro exam, MRI of brain and c-spine, VEP.  They found one lesion and an abnormal VEP.
Diagnosis: Optic Neuritis (Possible CIS.)

Off to the MS Neuro at the Rocky Mountain MS Center.  We decided to "watch and wait" for 6 months.  About 3 months into watch and wait I developed Trigeminal Neuralgia.  Decided to do a Lumbar Puncture (LP).  The 2nd MRI would be a couple of months later.  The LP was negative and the first thing the MS doc said was that if it was positive, that would have made the diagnosis.  So second MRI and 4 or 5 new lesions with visible changes to the right optic nerve and left optic tract.  

The MS Neuro asked if I was OK with watching and waiting for another six months.  I asked about the risk to my vision was if I had another attack of ON and what would he do in my shoes.  We talked about my age (pushing 49 and the time) and the fact that I was male.  Older onset and male can lead to a more aggressive disease course. Diagnosis:  RRMS.
DMD: Copaxone  It can take 9 months for Copaxone to become effective on changing the immune response and providing a 30% reduction in relapse.

70 days or so on Copaxone and I had a recurrence of ON.  S u c k s but that's what happens.
Today will be dose 3 of IVSM.  3rd MRI in Apr with my 6 month post-diagnosis follow up.

The LP can help the doc but is not a deal breaker.  10% (or 40,000 PwMS in the US will have a negative LP.)  Abnormal Evoked potentials help, but normal evoked potentials are not a deal breaker.  For most MS centers and insurance companies, a negative MRI is pretty hard to get around.

Bob

[HVAC]

I hear your fear about the money. I am making monthly payments for tests now. What he says make perfect sense. There is no one test for MS it is based on the McDonald Criteria you can click on the Health Pages at the upper right to read more about it. This is not an easy diagnosis. The danger is the longer you wait and do not start treatment to slow progression, if it is MS, the more permanent damage occurs. Unfortunately this is not an inexpensive disease. It is also a disease which can not be ignored. I can't say whether an LP will get you a diagnosis. I can say waiting will cost more in the long run.

For example if a person with MS is diagnosed early and gets on a medication to slow progression they can live a fairly normal life. Someone who is diagnosed later in the progression of the disease when permanent damage has occurred is going to have higher medical costs. More hospitalizations, PT,OT, Home Health Care, retrofitting houses, possibly electric wheelchairs, a special vehicle, more medication, more Doctors visits, etc.

I know all of this is scary to think about. It can be overwhelming. I just take it one step at a time.

Alex