Dr. doesn't want to use DMD to treat my MS

[deborah0904]

I was diagnosed with MS in November.  That Neuro stated he couldn't help me because he thinks I have a rare form of MS.  I now go to another Neuro and he has suggested I not take any DMD.  He states that I've had MS since I was a child and that he doesn't see the need for DMD.  In September, I had to start using a cane because of leg weakness.  Some days are much worse than others.  My arms are so weak.  Why wouldn't he think I'd benefit from medication?  I'm confused.  Does anyone have any insight on this?

[Karen99]

Not using a DMD is absolutely CONTRARY to current treatment of MS.  The thinking is that there are possibly variables of MS but a "benign" or "rare" type of MS does not really exist.  The entire purpose of using a DMD is to slow the disability MS can cause by reducing relapses.  I would think that given the fact you are using a cane your MS is active and causing further disability.  So what if you've MS since childhood (which I doubt) that is all the more reason to be on a DMD because the symptoms and damage accumulates.  

Why add yet another symptom or deficit if those can be curtailed, slowed,or avoided?

Ask your neurologist that question.  

[Hope75]

I'm sorry you are having a difficult time.  I just noticed one of your posts saying pinprick sensations was one of your first sensations of MS.  I am in the progress of seeing if I have Lymes, after thinking at several points that I may have MS.  I know how frustrating it can be and just know that when you feel low or depressed, it is only temporary.  You will feel better eventually.  Sunny days are around the corner, literally.  I was feeling pretty low in late Feb. and our first pretty weekend of weather helped me tremendously.  Maybe I had a touch of seasonal affective disorder!  Anyway, take care and dig in for the positives in your life.

[doublevision1]

You said the second neuro said "there is enough evidence to point to MS."  Does this mean you do in fact have a MS diagnosis?  Was he specific about RRMS vs SPMS vs PPMS?

What diagnostic tests were done (MRI, spinal tap) and did the results support a MS dx?

You said that you have been told you were tested for all the mimics.  I would encourage you to not assume anything as fact unless you see it for yourself (a lesson that many here have learned the hard way).  If you haven't already done so, I'd encourage you to get copies of all your medical reports (labs, MRIs, neurologists' reports).  That way, you will know for sure what tests have and have and has not been conducted, and you'll know for sure what your results are.  I would think that any reference to treatment decisions (or rationale for lack thereof) ought to be included in the neurologists' reports.  It may provide more clarity that what has been shared with you verbally.

On a related note, two years after my dx of RRMS, I was recently told I need to be tested for Neuromyelitis Optica (NMO) (aka Devic's disease).  Does this ring a bell?  Until recently it was considered to be a "rare form of MS" and only in the past couple of years has begun to be viewed as a separate disease, and there is not yet full agreement on this from what I have read.  Perhaps there is a suspicion that you have this, or some other similar condition?  NMO may be ruled out by a specific blood test (NMO-IgG) but neg results are inconclusive and may require spinal MRI's and spinal tap.  Your lab reports will indicate whether this test was run.  The opinion re: DMD's *may* make sense, as DMD's are not proven to be effective in such cases of rare diseases like NMO.

Or, perhaps the thinking is that you may have PPMS?  I don't think there are any DMD's approved for its treatment since none studied thus far have been proven to modify the course of the disease (correct me if I'm wrong, folks!).  This may explain the neuro's opinion not to treat.  If you did have PPMS, esp since childhood, you'd think you'd have had more of a steady decline, but then again, if you have a 'rare' form, perhaps this doesn't fit the typical picture for this form of the disease.

I personally wouldn't bring Neuro #1 to the weenie roast, since he knew what he didn't know, and referred you to the Neuro #2.  And I'd reserve judgement on #2, until it's more clear on what basis he is basing his comments on.  So far it doesn't not sound like he has been very clear.  I think getting your medical documentation is really important, esp as you are considering consulting a third neuro.  You don't want the only copy of your records to be spread amongst different neuros in different states.  

Good luck and I hope you keep use posted.

[deborah0904]

Well, needless to say, I've been down a very, very long and frustrating road.  ha.

I've had testing for all the mimics (Or at least I've been told I've been tested for them).  I've had symptoms since I was a child so, that's why they think I've had this since then.  The Neuro that initially told me that I had a rare form mentioned that it might be something like Leukomalacia, Addison Schilder's and a few other names.  It's scary to think I have always had pains, spasms, etc and all of a sudden get the leg weakness, arm weakness that was much worse than I've ever had.  That made me scared to think it was progressing much more quickly but these Dr.'s don't seem to think so.  

There is a Dr. in Bethesda MD that I may try to get appt. with to see if he can find out what's wrong.  RIght now, I'm just so sick of Dr.'s.

[Heather3418]

This has me very confused.  I know that there are rare diseases that mimic MS, but if you have MS, he needs to tell you what kind.  Even if it was the most progressive form of MS, there are some treatments that might be helpful.

If he says that you have had this since you were child, I would ask him how he knows that?  What proof does he have?  The way you describe your symptoms, I think you WOULD benefit from a DMD and NOW!

If you had MS where you didn't have relapses, only attacks, you would be much more disabled by now.  Have you had all the testing done to rule out mimics of MS?

Like I said, I am confused.....since your current Neuro says you don't fit the criteria for MS, but then says there is enough evidence to point to MS.  Okay doc, then what is it and how do you treat it?

Oh boy, it's really time for a Neuro Weenie Roast.  Did these twit Neuro's take any courses in common sense?  Maybe they need to have a talk with "Dr. House," on tv....

Heather

[deborah0904]

The first Neuro didn't know the name of the rare form of MS and suggested I go to St. Louis.  I went to St. Louis and that MS Specialist didn't think I have a rare form of MS but she says I don't fit the classic criteria for MS since I didn't seem to have relapses.  The current Neuro/MS specialist also states I don't fit classic criteria for MS however, there is enough evidence to point to MS.  

Because I've always had alot of stiffness and pain, I'm thinking I've not really been able to adequately express my symptoms for them to realize there really has been some times when I haven't had all the symptoms at one time.  I'm just not sure what to think.  I'm apparently in between a rock and hard spot.  I'm kind of sour on Dr.'s right now.  

[Sarahsmom46]

Was this neurologist and MS specialist?  How on earth could he say that you had MS since a child?  

I'll bet Quix is going to jump all over this when she reads you post.  Lets see what she and others have to say and go from there. But, looks like you might need to go for a 3rd opinion like I did.  

Julie

[PastorDan]

Do you recall what the first neuro said was the name of the "rare form of MS" that you supposedly have?  I've not done enough reading on this topic, but it sounds like one doc thinks it might be pointless and the other thinks it's unnecessary.  I don't understand either perspective, frankly.