MS clinic for first time. Any advice?

[fugue79]

Finally! I'll be going to an MS clinic/research facility this Thursday afternoon. Thanks to your suggestion.  I have my scans and reports from former neuros, but I'm wondering if there is anything extra I should bring along. Also, I'm wondering what to expect on a first visit.  

None of the three neuros I've seen so far has been able to tell me what the lesion/s are, so I'm hoping for more answers on this visit. Basically all of my hopes are placed in finding out it is not a tumor.  Though I've heard sometimes that ms lesions can have a tumor-like appearance.

Here is what I'm wondering: In your experiences at clinics, What other kinds of testing will an MS clinic do that a private neuro won't? Is an LP a valuable test and is it very painful?

I think my worry is that it will be another inconclusive experience, but I'm going to fight that with optimism.

Thanks for your input!
N

[fugue79]

I haven't yet had evoked potentials.  I'm assuming at some point in the near future I will have that.  What a ride it has been.  Things are way more relaxed now that I know what it isn't.  I can be patient.  If something comes up I'll inform, and thanks for your support.
N

[doublevision1]

Many patients with MS, me included, actually don't have O-bands.  A positive LP can help solidify a MS dx, when considered as part of an overall picture.  However a neg LP does not in and of itself rule out MS.  It IS confusing!   Have you had evoked potentials testing?  This might help to better understand whether things are pointing to or away from MS.

[fugue79]

Good morning! Now I'm just plain confused.  I'm thrilled that cancer has been ruled out, and you're right, ess, it was just a matter of blood tests to rule out the cancers. They did a series of antibody testing for paraneoplastic syndromes including anti-ro, anti-jo, anti-sm, and some other antibodies I can't remember.

They also did some imaging as part of cancer screening, and those scans compared with old scans were normal. It only took one day to get test results back.  Now my LP results are in from Friday.

I'm confused because the updated MRI shows a new lesion so now I have an active lesion in cspine and the older one in cerebellum.  But all of my LP results are fairly normal.  I don't have IgG, no O Bands, no increased Albumin ratios, nothing like that.  

They have ruled out cancer, infectious causes, trauma, everything.  In fact, my IgG in serum is just below normal.

Anyway, I'm okay with this.  I know a lot of people have to wait years to find out what's going on.  Just going to roll with it.  

I hope spring has made it to all of your doors.
N

[essdipity]

It's great that cancer has been ruled out for you! Congrats!

I do want to know how Mayo did that. A brain MRI would or should rule out a brain tumor, but the way it was explained to me, paraneoplastic syndrome means the blood is showing something-or-other regarding cancer somewhere in the body. So for me that meant just blood work, but it took them seemingly forever to send the lab results. If there's a shorter way, I'm all for it.

I'm with you in hoping it's 'just MS.' Try reading the blog of the Wheelchair Kamikaze, who was a self-confessed semi-hypochondriac before dealing with the reality of MS, or maybe another mystery neuro disease. I think he's great.

ess

[doublevision1]

I'm glad you provided this info on your experience so far at Mayo.  I also realize others have not had great experiences there, and I am puzzled at their approach of not necessarily prescribing DMDs for those with early but definitive MS.  

That said, I don't think that these matters should completely discredit them.  I'm sure there are plenty of MS patients who receive good care there.  If they truly don't want to dx anyone with MS, they would have no need for MS specialists on staff. :) And, they're involved in some really interesting and promising MS research.  

As for other demyelinating diseases, they are the leading experts along with researchers in Japan, in neuromyelitis optica.  In fact, my testing for it couldn't even be processed here in Canada, it had to go to Mayo for analysis.  

It's helpful to hear both the good and the bad experiences we all have, as  it provides us with a balanced perspective.  It's so easy to develop a bias based on one-sided information, which in the end is a disservice to patients seeking answers.

[fugue79]

Haha. Yes.  I was always on the verge of hypochondria, but now that something real has happened I've gone a little mad.  I'll have to learn how to manage that.  

N

[kwarendorf]

You sure are being thorough :-) Glad to hear you're getting answers.

Kyle

[fugue79]

I thought it would be interesting to post clinic experience while I'm in it right at this moment. I came up here to Mayo clinic in Minnesota as a backup, mostly to rule out malignancy. I needed to be sure, and fast!

So I came to Mayo to rule out cancer.  They did! I'm so relieved.

I know that Mayo is known for dismissing or discrediting MS. I've read so many unfavorable posts about it here and on other forums, and I decided not to mention MS or demyelinating diseases to the docs here.

The twist here is that my neurologist at Mayo is the only one I've seen, out of five back home, who has considered MS a possibility. He thinks it looks a lot like an atypical presentation of MS or other DD.  I really didn't expect that.  He ordered an LP for me, and other serum testing.  I haven't gotten those results back just yet, but I did learn that I have a slight Vit D deficiency.  I imagine most people have.  

Anyway, I am not promoting or denouncing the Mayo clinic. I just wanted to share my experience and progress with you.  

[kwarendorf]

Happy to hear that you are in good hands and making progress!

Kyle

[immisceo]

Delighted to hear it was a positive experience, even if it didn't result in any homerun answers on the day. It sounds like they're on the ball with the testing, so hopefully those will be forthcoming.

[essdipity]

Hey there. This is really just the beginning, but I know it doesn't seem like that to you. Been there, etc.

At least you are now in knowledgeable hands (I hope). The paraneoplastic syndrome will soon be ruled out or in, but it could take a while. Been there on that one too. It was several weeks (4 or 5) before that was eliminated for me, meanwhile trying to deal with a neuro secretary who could not have cared less. It was almost comical, except it was my life. Take comfort in the fact that cancers of this type are much more rare than MS. And MS is much more easily treatable.

EMGs are used to determine whether the problem is peripheral or central. Neither is good, of course, but central is what we know about here.

Hang in there. You've come a long way.

ess

[fugue79]

First visit to MS Clinic.

I must say that I am pleasantly surprised. My first visit to Columbia Neuro was full of respect and kindness.  The neurologist gave me so much room to explain my symptoms and concerns. I stopped explaining, trying to keep it brief, and he said "continue."  That was a first!

Findings:  He couldn't believe the level of spasticity in my neck.  It has nearly straightened out my c-spine.  On the possibility of MS, he said it is too early to know, given that it's just one lesion and just one small demylenating patch.  

They drew blood for paraneoplastic antibodies, and this is something I've been wondering about for months.  He was the first doctor to consider it without having to mention it. And by the way, if anyone here has ever had suspicion of paraneoplastic syndrome, I'd like to hear from you because it is absolutely terrifying to wait on that outcome.

Next is another EMG and MRI. Last EMG was negative.  He did say that he doesn't think the tingling in my legs and torso have anything to do with my c-spine, since there is not much cord compression.  I'm confused by that.

Further, he didn't know what to make of the fasciculations. Luckily they were acting up during the visit so I was able to show him.  That's it for now.  I feel like there is real progress happening now.  I feel like I am in good hands!  Special thanks to ess for suggesting an MS clinic in the first place.  

x
n

[fugue79]

Thanks, ess.  I appreciate that.  That sums the feeling up rather well: In the background or foreground, but always there.  I found the search community tab! What a great tool. Thanks.  I'll post any news from the clinic appt.  

I'm off to organize my materials for the visit, then a hefty nap.  

x
N

[SarahL2491]

Don't let them keep your copies of the MRIs and reports.  Make them copy or have copy made.  If I had turned loose of my sole MRI that documented my MRI, I would have never gotten another one, facility not there anymore.  Like doctor offices, I guess.  Also one of my old neuro's, if I had not kept my original copy of his report, would not have them, they shred after 5 years of inactivity.

Just a thought.  Not everyone or every site does that.  

[essdipity]

Hi, fugue.

Try googling multiple sclerosis lassitude. Also use the Search this Community route in MedHelp. You will find that this describes perfectly a peculiar kind of fatigue that MSers experience. Even if you wouldn't quite call it fatigue, it's still a very common feeling.

Of course, you could be just weary of all the waiting and lack of certitude, since you don't have a diagnosis, but still....

Every time I see my PCP, which isn't all that often, I complain of fatigue, not wanting to use the lassitude term, for some reason. Maybe because I think he'll consider it a psychological symptom, who knows. Last time when I said that, he commented that people with MS generally have fatigue only during a relapse. I didn't argue with him, but I did ask the NP about this a couple of weeks ago, and she said 'wrong.' It's pretty much always there, at least in the background, though sometimes very much in the foreground.

I hope all this gets resolved for you soon.

ess

[fugue79]

To be treated like a human being is what I'm most looking forward to. I honestly don't know how some of you have dealt with the months or years it took to get a diagnoses, MS or otherwise. This is only my fourth month and I'm exasperated. My heart really goes out to everyone waiting for a diagnosis of anything!

I have been meaning to ask this for months now, and I have always forgotten. But I must know if anyone has a "sick" feeling with their ms.  Not classically sick, like nausea or flu-like feeling, but just a vague 'toxic' feeling.  

It's almost like that sensation you get when you're about to come down with something, but without the symptoms, just the heaviness and lassitude. That's a symptom I probably won't mention at the clinic.

Forgive my vague description. I don't know how else to articulate it.

[kwarendorf]

MS effects more than just the brain or c-spine. It can impact just about every part of your body. The Columbia clinic looks like they treat the whole MS,
rather than making you chase the sum of its parts :-)

This is from their web site...

"Our team includes neurologists, a nurse practitioner, a clinical research coordinator, a psychiatrist, a neuropsychologist, urologists, experts in pain management, and several of the world's leading neuro-ophthalmologists. We work closely with an outstanding group of neuroradiologists and utilize state-of-the-art magnetic resonance imaging (MRI) for diagnostic purposes as well as to monitor disease progression and response to therapy. The Department of Rehabilitation Medicine provides comprehensive services to inpatients and outpatients with MS. Physiatrists, occupational and physical therapists, speech-language pathologists, therapeutic recreation specialists, rehabilitation nurses, and orthotist-prosthetists provide a variety of services, including rehabilitation, home modification evaluations, wheelchair and scooter evaluations, speech and swallowing evaluations, and augmentative communication assessments for patients in need of these services. For patients who choose to participate in clinical research trials, the world-class Hatch Magnetic Resonance Research Center is located just two floors below the MS Center."

[fugue79]

That's great to hear!  I'm happy to be going. They seem very kind over the phone.  :)

[kwarendorf]

I agree with Shell. Columbia is an excellent place to be. My doc was the associate director of that program from 1992-1998.

[sllowe]

Aw heck - you'll be in good hands there ;)
-shell

[fugue79]

Thank you both for the suggestions and that guide sheet.  I never would have thought to bring another set of ears with me. What  a great idea.  I also think that suggestion of explaining who you were before symptoms (what you've lost) is important.  

I'll try to keep my list brief and on the major symptoms, too. That's a tricky one because I'm initially tempted to list every pain.  I'll be going to Columbia University MS clinic.  

I am really hopeful that this visit will shed some light on things.  Thanks for your advice, and I'll certainly keep you posted this week.

Fugue

[kwarendorf]

Hi fugue -

Like golf, tennis, needle point or bread baking, The more you do something the better you're going to get at it. This holds true for diagnosing MS. The more a neurologist sees MS, the better they will be at diagnosing it. At an MS clinic it's all they see so they will be better able to look and think outside the box when trying to diagnose it.

A non-MS neurologist may see 5 cases a year, while an MS specialist will see 5 cases before lunch :-) I was lucky. The first neurologist I saw said she was 85 % certain I had MS. She then told me I needed to find an MS specialist.

It's great that you have a file with your recent history of tests. If you haven't done so, write down you symptom history. Try and stay focused on the big symptoms, like fatigue, vision problems, balance issues etc. By writing it down, and having it in front of you, you will be less likely to forget anything.

As to LP's, they are a valuable tool. They can often be the straw that breaks the diagnostic camel's back. In the right hands they are not painful at all. I've had two and never had so much as a headache.

Which clinic are you going to?

Kyle

[sllowe]

Morning!

Though you sound prepared, here is a quick prep health page:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Doctor-Visit-PREP---Be-Prepared/show/156?cid=36

You should be in good hands at an MS clinic. The more MS patients (regular or specialist ) a neuro has, the better - they simply just see more than typical. LPs are not necessary for diagnosis, but useful when more evidence is needed to rule in, or out MS.

Take a deep breath and feel confident you are doing all you can to find out what is going on - that'll give you a break from worrying :)

Wishing you a complete and thorough exam with a doctor who takes his or her time to identify the source of the problem. Do let us know how you make out :)

-Shell