What To Expect During An MS Workup

[robyn55]

Short history. Husband was diagnosed with relapsing remitting MS 26 years ago. Two flare-ups in about 20 years. Very very mild case (he ran 3 miles a day until after 5 years ago). Husband also has a bad back (herniated disks). He started to have some problems in 1 leg about 5 years ago. Had to stop running. Orthopedic knee doc ruled out orthopedic problems in the leg - but prescribed a big brace for his leg. We then went to a neurologist about 4 years ago. He had an EMG - and an MS specialist told him his relapsing remitting MS had morphed into SPMS. Didn't offer any attractive treatment options. And really couldn't tell us whether the leg problems were caused by the MS - or the bad back or something else. Haven't been to a neurologist since then. Husband still needs the big leg brace to walk - and his leg has atrophied (despite exercises).

Husband went on Medicare last year - and I convinced him to get the thing worked up again (maybe he needs a new leg brace - a different exercise routine - perhaps there are new drugs - either for MS or his back - who knows?). We're going to an MS specialist at Mayo JAX (happens to be our local medical center) for a consult. And then she will probably order a work-up. And we are both wondering what he can expect in terms of a workup. The only neurological tests he has ever had are the EMG about 4 years ago - and an MRI 25 years ago (which confirmed the MS Dx after a bout of ON). At Mayo - I'm sure that they will order whatever is considered even slightly reasonable (Mayo is well known for its extensive testing).

Anyway - lots of you here have had lots of tests dealing with MS. What do doctors do these days? Thanks. Robyn

[KoKo]

Hi robyn

If he is already diagnosed with definite MS, I'm not sure how extensive the work-up will be.

Most likely, a thorough clinical neurological exam will be done to evaluate his neurological deficits and assess the need for physical therapy, occupational therapy, symptom medications, etc. An eye exam by a neuro-opthalmalogist to evaluate any eye issues may be ordered. I would think that another MRI would be ordered since it has been 25 years.

Also, I'm thinking that any additional tests will depend on the issues he is having, such as bladder problems, etc.

Maybe some of our members will have some more input for you.

Best wishes to you and your husband!

Take care,
KoKo

[Windwalker]

I think you guys "lucked out". Not doing anything was not one of your most intelligent decisions.

My approach was also to ignore and carry on business as usual, until it became so bad I could no longer ignore.

Fortunately for you guys you have outlived this thing for the most part. Pure luck that your inaction did not come with a heavier price.

[robyn55]

It could be a hereditary thing too. My husband's late mother was diagnosed with MS when she was in her 30's. Had a couple of flare-ups - then never had another MS problem for the rest of her life. I wish more work was being done on the genetics and hereditary aspects of MS (I know there is some - but I'd like to see a lot more).

And sometimes less is more. My husband has a small hole in his heart valve - and - about 10 years ago - a local surgeon was eager to repair his heart valve. Scared the heck out of us. So we went to Mayo Rochester for a second opinion. And the world class valve surgeon there said no way my husband needed a valve repair. Monitoring yes - surgery no.

A lot of MS "treatments" involve very powerful drugs with potentially serious side effects. We don't stick our heads in the sand when it comes to keeping on top of new medical developments (when it comes to MS or anything else) - but are usually rather conservative in our approach to medical care/treatment. Your mileage and those of other people here may vary. Robyn

[SNOOPY]

I think you guys "lucked out". Not doing anything was not one of your most intelligent decisions.

Fortunately for you guys you have outlived this thing for the most part. Pure luck that your inaction did not come with a heavier price.

I, personally think your statement is a bit harsh considering MS is very different for everyone. There are no gaurantees with or without the DMDs.

This is a disease that is still not understood and your opinion is if someone has done okay without drugs it's pure luck?

Hi Robyn and Welcome to MSworld,

Since your husband has already been diagnosed I would assume he would have MRIs and bloodwork as well as a Neurological exam. Beyond that I am not sure what if anything they would do.

Like your husband I was diagnosed in 1985. I was 24 at the time with symptoms that go back to childhood. I do not use the DMDs -- I prefer to take my chances with the disease it's self. So far it's worked fine for me.

I hope all goes well with your husbands appointment.

[robyn55]

Thanks Snoopy. Whether luck or something else - I'll take it. Your history sounds somewhat like my husband's. And I guess for those of us who have been dealing with this for a long time - we have become used to the idea that there is no "magic bullet". I don't even think the ABC drugs existed when my husband was diagnosed in 1985 - and MRI technology was pretty new.

Also - I think there may be a difference in attitude in terms of what you're willing to do if you're young and relatively healthy except for a really bad case of MS - and older with some other health problems (who doesn't have something wrong with them when you're 66?) and a not-so-bad case of MS. E.g., my husband takes meds for high BP - and has a family history of strokes. Yet some MS drugs can cause hypertension. So do we make the cardiologist happy - or the neurologist happy (assuming the neurologist recommends meds - the last one we saw didn't)? It's a question of weighing pros and cons - very individual personal decisions IMO.

About the only strong feeling I have is unless I were in dire straits - I'd be reluctant to use very new drugs (for anything). Look at the history of a drug like Avandia (for diabetes). Robyn

[SNOOPY]

I don't even think the ABC drugs existed when my husband was diagnosed in 1985 - and MRI technology was pretty new.

You are correct, there were no DMDs for MS in 1985. The first drug to become available to the general MS population was Betaseron in 1993...by lottery.

There were 2 MRI machines for the entire State of Colorado in 1985

I wish there was a "magic bullet" for this disease

[robyn55]

Just a follow-up. We met with the MS doc at Mayo this week. She did a comprehensive neuro exam. Wasn't obvious to her exactly what was going on with my husband's leg. But he will be getting a first class "soup to nuts" workup. MRIs of the brain - the entire spine - and the bad leg. Consults with a physiatrist and a sports med doc who specializes in legs/knees. Some blood work. Then back to the MS doc for all results/recommendations. These tests will be done over a period of weeks.

I love Mayo - it's total one-stop shopping (and a 10 minute drive from our house). Don't know if anything can be done (guess that kind of depends on what the tests show and what the doctors see/find). But - if anything can be done - I'm sure we'll find out what it is. FWIW - one thing the initial exam showed. My husband has a Babinski's sign now - he never had it before. That is not good news. Robyn

[KoKo]

FWIW - one thing the initial exam showed. My husband has a Babinski's sign now - he never had it before. That is not good news.

Robyn

I had the Babinski's response at my very first neuro appointment, 12 years ago. It was only on my right foot at that time, which meant there was an issue with my central nervous system, and it was affecting only the one side, at that time.

Hope this helps.

Take care,
KoKo

[robyn55]

Well - the MS workup is over. So I thought I'd report back. My husband wound up with 5 MRIs (3 spine - brain - knee). The brain shows some evidence of MS - the spine a lot. And there's no evidence that the leg problems are being caused by something other than MS (he has a little spinal stenosis - no big deal). The knee MRI was the most interesting - because it showed that his ACL is just gone. Apparently - even using a brace - the leg muscle weakness caused by the MS resulted in enough hyperextension at the knee to tear the ACL to pieces.

The physiatrist really couldn't offer us anything (there's no rehab for my husband's condition).

The sports med doctor was not at all enthusiastic about ACL surgery for several reasons. First - my husband is kind of old for that surgery. Second - the stress of the surgery might cause a flare. The rehab is long and grueling - and might also cause a flare. Fourth - since the leg will stay weak - any reconstruction would have a good chance of failing. And - even with reconstruction - my husband would still need a leg brace. Didn't take us long to think that one through .

The sports med doctor did prescribe a new and different kind of brace (an ACL brace) - and that has helped. He also injected my husband's knee with cortisone - and that has reduced the pain.

The new brace - like the old one - sometimes rubs and causes skin breakdowns. We bought some OTC things to deal with those. Also - my husband ordered a set of crutches that he can use if he gets a bad skin breakdown and can't use the brace for a while his skin heals.

Finally - we saw the neurologist again - today. She did not recommend any MS drugs. Because - basically - there aren't any reasonably safe approved drugs for secondary progressive MS - which is what my husband has. She did give him an Rx for a drug to help with the leg spasms he sometimes gets at night. And said to set up an appointment a year from now - so she could see how he's doing - and fill us on in new developments in terms of treatments for secondary progressive MS.

She did mention the possibility of doing a spinal tap. Apparently - there are certain proteins in spinal fluid that have some predictive value in determining the future course of one's MS. We wouldn't do anything one way or the other on the basis of such a test result. So we saw no reason to have the test. But it might be a useful test for some people in terms of planning their next 2-3 years (like take that trip or do something else you want to do that you might not be able to do 2 years down the road now).

FWIW - I thought the Mayo Clinic (JAX) was great in terms of this workup. We're local (and use Mayo for secondary and tertiary care matters - not primary care) - but I recommend it highly even for people who aren't. The MS doctor we used (who coordinated everything) was Dr. Elizabeth Shuster - and I give her .

For those of you from out of town - Mayo workups are frequently compressed in terms of time for people from out of town (since we're local - there was no reason for us to have everything done on an expedited basis). OTOH - I doubt a workup like this could be done during a single trip.

Anyway - if anyone has any questions - I would be glad to try and answer them. Robyn

[re.becca]

I just want to say that I wholeheartedly agree that Dr. Shuster is an amazing doctor. I've twice traveled from Charleston, SC to Jacksonville to see her, and it was definitely worth the trip. I don't completely trust the MS specialist I have here in Charleston, and she was a fantastic resource for me in decision-making about treatments (twice, as not much seems to work for me). Mayo is a great place to get answers you can trust from truly knowledgable doctors who care. I can't say enough good things about them.