Please give opinion

[dannig]

Hello,
     I haven't really posted much on this web site,  I have been using it for info.  I think it's wonderful how everyone is very supportive and caring towards one another, you just don't see that very often anymore.
I have been going to a general neurologist since Jan 08 and am going to a MS specialist tomorrow so I'm hoping some of you can give me your opinions before then.  I apologize for the length of this post but I'm just trying to provide as much info as possible and I APPRECIATE any feedback I receive.
     Last summer I started having severe urinary urgency and incontinence, I am 29y, female, and have never given birth.  I was dx w/ neurogenic bladder (urinary retention) was tx w/ antibiotic and incontinence resolved but retention continued.  Now in the past (especially last Aug when urge/incont started) I've had periods of fatigue-I didn't do anything for days except bed to couch and couch to bed-slept for 10-12 hours at a time.  Seem to always feel fatigued but can function.  For years I have muscle pain on a regular basis w/ numbness in my extremities lasting a few hours at a time, frequently I feel like there is WARM water running down my lower leg/foot (I always have to ckeck to see if there is water even when I know it's impossible because it feels so real), twitches, and a sensation like my skin is raw.  So I went to a neurologist and he found I have a + Babinski reflex and paresthesia (abnormal sensation on my skin)
      Brain MRI shows:  There is no evident mass, hemorrhage, recent infarct or extra-axial collection.  There are nonenhancing, nonspecific white matter high T2 signal lesions w/in the centrum semiovale and corona radiata white matter of the frontoparietal  areas B/L.  These do not establish the dx of demyelinating disease although they might have that relationship.  Also consider complex migraines in the appropriate clinical setting or other small vessel vascuiopathy.  There are 4 to 5 focal lesions total.  There is no abnormal contrast enhancement w/in or adjacent to the brain. Impression:  Nonspecific focal white matter signal abnormalities in the frontoparietal areas B/L, w/out
contrast enhancement.
     The following test have all been normal:  MRI's C-spine, T-spine, L-spine, LP, visual and somatosensory evoked potentials.  The following blood work is all normal:  CBC, Electrolytes, Magnesium, Lyme (western blot), ACE, ANA comprehensive, SSA & SSB,  BUN/Creatinine, TSH, RPR, Vit B12, Vit B1, Creatinine Kinase, Copper, HTLV 1 and 2, SPEP, Anticardiolipid, t-Transglutaminase, Homocystine, C-reactive protein, PT PTT INR.
I had a OCT done last week at a neuro-ophthomologist office-he said he noted pallor in my R optic nerve but he is supposed to fax full results to me today and I just had another brain MRI (3 1/2 months after the first MRI) and those results are to be faxed to me today also.
     My last visit to my neuro, 2 weeks ago, he said he wasn't dx me but I should look up DMD's so that we discuss them at next visit because if it is MS starting the DMD's will help to prevent disease progression.  Which I'm not really comfortable starting meds w/o a dx-what if it's not MS.
I apologize again for the length of this post.
Thankyou,
Danni

[cjacks]

Daani

Sorry your exam didn't go as you had expected ..  What did the ms specialist have to say ?  Any talk of DMD's  or what to do next?  Did you like him?   At any rate you have a good general neuro..  :)    .Keep following up with him .

Quix .   You have answered some of my q.s about treatment or not ..  yes it would be good to have it handy , just as a reference for some of us ( me ) when in the frame of mind not to tx. .. it would be a good reminder, its was a gentle ,easy way of looking at it ..   Thank you very much

Jo

[dannig]

Thankyou for all of the info.  I greatly apppreciate it.  Well after the visit to the "MS Specialist"  I have to say he was not very informative and I was very disappointed because he didn't even do a physical exam on me one of his residents did and some of my abnormalities were previoiusly found on physical exam ie. + babinski reflex and she didn't even check for that and only checked my reflexes on my knees, she didn't check my lower legs or my arms.  Also I forgot to add to my original post that my reflexes were hyper.  So long story short or at least shorter then my original post I didn't feel as though it was a very thorough exam.
Danni

[sllowe]

Your response to Danni is very helpful to me.  I hope Danni reads it.  

Friends - How can we make sure this one is at our finger tips when we need to read it, to keep our heads on track?

-SL

[nikki861]

Am i understanding this correctly...........this would be a case of clinical MS? Because of all her tests coming out alright.........but the symptoms continuing? I guess I am just a little confused. Sorry

Beth

[jensequitur]

I'm not sure whether OCT is being used regularly or not, but I think it's good for diagnosis and monitoring progression.

Quix, I see a lot of people here and on other threads come in with that very same question:  "Help, my neuro thinks I have MS but he's not sure.  Should I start on the DMDs?"  I'd like to see a health page that talks about it in detail - like the answer you've given here!  That way we can direct them to the page, rather than repeating ourselves.

I'd also like to see one that tries to answer the question "Do i have MS?"  Honestly, I get sick of seeing it, because the answer is always "I don't know!"  It's so hard to diagnose it anyway, and a neurologist won't sign off on it unless it matches the McDonald criteria.

[Quixotic1]

Well...thanks, guys.  I hope Danni finds it useful, too.

What part of it do you think would make up an HP?  Most of it is geared toward Danni's particular situation.

I'll be glad to adapt it into a full page, but tell me what was helpful.

Quix

[essdipity]

I had understood that OCT is good for monitoring disease progress (or lack thereof, we hope), but not for initial tests and diagnosis. Is this wrong?

ess

[jensequitur]

Yup, that's something we need to put in the Health Pages section.  It's a question that gets asked frequently, so it's something we should be able to direct people to.

Just as an addendum, I've heard that optical coherence tomography can help diagnose MS.  Basically it looks at your optic nerve, which will show atrophy even when there's no lesions in the brain.

And I don't think there's any such thing as benign MS.  Just luck!  

[happyvalley]

That was fabulous. How kind of you to take the time to lay all that information on the table for ALL of us. It really helped me as a watcher of the forum.

thanks!

[essdipity]

Could there possibly BE a more complete, more informative thread?  I truly truly doubt it. Thank you all, and especially Quix. I hope all members here will mark this one as a Favorite, and refer newcomers to it regularly. If it could become part of the health pages somehow, that would be icing on the cake.

ess

[Quixotic1]

Hi, Welcome again to the forum, I'm glad you posted again.  I'm even more glad that you have found us to be a good source of information.

You have symptoms that are very consistent with MS.  Have they come in "episodes" at all.  You had the onset of neurogenic bladder along with fatigue.  Clearly the urinary problem has lasted.  Has the fatigue remitted for any length of time?  And when you have the paresthesia (sensation of warm water running on the skin - isn't that annoying!!!!?)  is it present for some time, then absent , then present again?

No matter what your answers, you present the perfect picture of a person with early MS.  You know the drill, we cannot diagnose anything here.  But, you are the right age, you have symptoms suggesting a demyelinating process, and it sounds like the symptoms have come somewhat in waves, even if some have been continuous.

Your work-up has been stellar! and very complete.  I'm amazed.  It sounds like your neurologist is really on the ball.  Your chance of having something else wrong has been minimized by this careful work up.  It is not "zero," but I certainly can't think of anything else to test you for.  If you have read the Health Page on the History of the Diagnosis of MS, you know that you can fulfill the requirements for the diagnosis of MS, with mostly information from the history and physical.  You definitely have fulfilled the need for what is called "the Dissemination in Space." requirement, meaning that there must have been attacks in more than one part of the body.  The question is whether you have also met the requirement for "Dissemination in Time."  This is the need for separate attacks occuring more than a month apart as shown by a new physical finding or meeting new MRI criteria.

As for rigid adherence to the McDonald Criteria, a doctor can make the diagnosis without strictly fulfilling the published criteria by giving more weight to the history and physical and to his/her intuition.  I was diagnosed that way (and quickly it was clear that my neuro's assessment was Right-0n)  

The last requirement for the diagnosis is that all reasonable alternative explanations for the patient's problems has been ruled out.  You have presented us with the most complete initial search for MS Mimics that I ever remember seeing!

So it does come down to one of two things if the doctor's assessment is that this is by far most likely MS.  If your course has proven the appearance of different lesions (by this I mean evidence of damage in the nerves, NOT purely MRI lesions) at two or more different times.  Only your neurologist knows this, though the newest MRI may provide this info.  If there is this evidence then, yes, you have MS.  The other possibility, is that you are SO close to fulfilling the requirements, that you can be called a CIS, Clinically Isolated Syndrome.  The would indicate that you have a very high (>89%) chance of fully fulfilling the diagnosis in the near (next few years) future.  

Both of these situations would qualify for the beginning of the Disease Modifying Drugs.  And that is why your neuro wants you to become educated.  

Then there is your question, "What if you don't have MS?"  Though it sounds to me that that is unlikely, I try to look at these questions like this:  What is the worst thing that could happen if 1) I don't have MS and I start a med?  The second question is 2) What is the worst thing that could happen if I have MS and I do NOT start the med?

Let's look at # 1 first.  If you don't have MS, the medication will be a significant expense to you and/or your insurance company.  There can be side effects, but we are talking about botherations, not fatal catastrophes.  The DMD's do not truly suppress the immune system.  They alter a specific part of it to modify the inflammatory/destructive part of it.  This provides a significant number of people the opportunity, we believe, to slow down the disease.  We know the meds can delay the actual manifestation of the disease if one has CIS.  We don't know how long this delay will be and we don't know the ultimate effect (20 years down the line) on becoming disabled.  For some group of people this drugs may not help.  But, many very promising meds are moving through development.

The current DMDs do not open you up to the risks of serious life-threatening infections, future malignancies, cardiac, kidney or pulmonary damage like some pwople think.  This is because many people mistakenly think the DMDs are just like chemotherapy for cancer, or the meds used for Rheumatoid Arthritis, Chron's disease, Lupus, Psoriasis and other serious autoimmune diseases.  This is NOT the case.  The DMDs are milder.  This is important.

#1 also brands you as having MS.  However, your present severe symptoms, like neurogenic bladder, will do the same thing in terms of life and disability insurance.  If you do not have MS, likely the real answer will surface, especially if you have an alert neurologist (and it sounds like you do).  You can always stop the meds.

Okay that is the first scenario.

The 2nd possibility is that you do, in fact have MS, but you do not start the meds.  In this case you are doing nothing to slow down the progress of the disease.  It will most likely continue to do what it is already doing to you.  Your major problem is the urinary one and the fatigue.  These are not benign symptoms.  I wouldn't place you in a category of "Probably will have a benign course."  But, remember, I am not a neurologist.

Yes, you can always start the meds later.  The problem with this, in my mind is that the DMDs have been shown to be most effective early in the disease and less so later.  The time you wait cannot be reclaimed.  Later (and we are talking years, here) the meds as we know them, will not be as effective.

Also, though we all hope, the next meds on the market may not be the salvation we pray for.  They may have fatal flaws not seen during the trials.  Waiting on them is a risk.

So, those are the options as I see them.  Clearly, you see my bias in going with the recommendation of your neurologist, whatever it may be.

As to which, they are all about the same efficacy.  The differences are mainly the schedule of dosing - daily, every other day, three times a week, once a week) and the side effects.  People here will discuss the choices they made and why.

I hope this helps.

Quix

[doublevision1]

The only thing I can suggest for your appt with the MS specialist tomorrow is to jot down a chronology of your symptoms, brief and to the point.  I assume she/he would already have your reports but bring copies just in case.  Also jot down alll of your questions, it's so easy to forget something when you're there.  Another suggestion that someone else here has made (Ada perhaps?) was to describe what your life was like prior to the onset of symptoms, and what is it like now.  This helps to paint the picture of the real impact of whatever it is that is going on.

I agree with your neuro to do the research on DMD's, in fact if you have time today, do that prior to your appt tomorrow, so that if it comes up you are somewhat prepared for the discussion.  It may also raise some questions for you that you can get promptly answered by your specialist.  Your symptoms and suspicious brain MRI do sound consistent with MS, but certainly they want to rule everything else out first, and there are so many mimics of MS.  The MacDonald criteria must be met in order to confirm a MS diagnosis, and based on the info you have provided, I'm not sure whether in your case the criteria has been met.

I hope your appointment goes well tomorrow in terms of bringing you closer to some answers.  It is a very stressful thing to have to go through but you will get lots of support here.  Please keep us posted, Danni.

db