Questions regarding diagnostic stage

[addicted2harleys]

Hi, all-

I have spent a lot of time looking through the health pages and reading past forum topics.  This site truly is amazing and I thank you all for being here.  I don't believe this site could be what it is without each and every one of you.

I have several questions now that I have read up everything.  lol  I hope ya'all can help me out some.

MRI's:  I keep seeing lots of info regarding the Telsa rating of the machine.  In the past 2 years all of my MRI's have been on the same machine, except one.  The machine is a Siemens 1.0T Harmony high field MRI scanner.  Is this a good machine?  I am still confused about the Telsa thingy.

Also, how can you tell when reading the report whether or not MS protocols were used?  And, how do I figure out what size slices were used?

During the diagnostic stage, how often should an MRI be done?  And, should it be just the brain or brain and spine?  My last MRI was done August of 09.  

Since then I have had 2 exacerbations.  The first one (June 09) I did go to the doctor about.  He ended up giving me Solumedral injections for 5 days and then pills tapered down.  This helped tremendously.  I could see a noticeable difference every day.  I was back to feeling somewhat of my normal after about 2-3 weeks.

The second exacerbation is happening now.  It has been almost a month since onset.  I did go to the doctor again because my pain increased with a vengeance and have new symptoms.  He changed my pain drugs plus gave me meds for UTI (I didn't even know I had one AGAIN!).  I went back for followup and UTI is gone...but I am still wetting my pants...can't get to bathroom in time and when I gotta go, I GOTTA GO.  He did give me something for that plus started me on Baclofin.  

Shouldn't I have another MRI done now?

I was initially diagnosed with MS 5 years ago.  At the time, I didn't even know what MS was.  2 months later, it was taken away.  I can't seem to get my hands on that initial MRI and LP (long story).  But, all of my other MRI's come out normal, as did my EMG (though it did say upper motor lesion such as MS or motor junction problems such as MG are two examples of diseases that would not show up on an EMG that could explain some of the patient's symptoms).

I do have a neuro...but he specializes in strokes.  I am thinking he is not the right one for me...even if it does turn out I don't have MS.  He is VERY hard to get a hold of, let alone get an appointment with.  And, on my last visit, he told me to pull up my boot straps  This has become an inside joke at my house now...but when he said it, he absolutely deflated me.

So, how to find a new neuro?  I have decided that I definitely want one that specializes in MS.  There are none around me...but I did find a clinic at USC (3 hours away).  Looking at their web site and all they do, kind of gives me some hope.  I am waiting for my referral to go through so I can pay them a visit.  It still feels a little scary because it would make my 5th neuro.  !st one took my MS dx away.  2nd one told me I had a virus attack my neuro system.  3rd one saw me for 4 minutes TOPS and asked me what did I expect him to do for me and told me I was faking it??  4th one is the stroke one I have now.  I am tired of trying to find a neuro that does not dismiss me.  I don't WANT MS...but I definitely feel that I deserve some respect and validation.  I want answers...no matter what they may be.

Damn, I don't always mean to post such long messages...but I always seem to.  I hope I haven't lost anyone because of it.  ;0/  Still have a couple questions though.

Will anything that my primary doc has clinically witnessed go towards the guidelines for an MS diagnosis?  Or does it have to go through a neuro?

Interesting tidbit...A couple weeks ago I posted a question about twins and one having MS and the other one not.  I asked because I am going through this limboland crap but my sister doesn't seem to have any neuro issues.  But, I just found out that my sister was just diagnosed with MS.  That completely came out of left field.  Makes me feel rather crazy to admit that I am jealous.  I have been dealing with this for 5 years.  She goes for one doc visit and get a dx.  What is up with that???  Now, since she has been dx'ed...how does that affect me?  

My eyes:  I have had trouble with blurry and double vision.  The double vision is only in my right eye.  The blurry kind of comes and goes.  The issues have caused me to quit driving.  I have had several eye tests and the only thing they have found is dry eyes.  I have been being treated for that for about 6 months now.  I no longer show the dry eye in the tests, but still have double vision.  The eye doc says it is neurological but he does not see lesions.  I also get the floaty things and the little mouse (that confused me to all hell until I read about it here!).  My question is:  Does my eye doc visits help with MS diagnoses or, again, does that have to be done through neuro?

Can anyone explain to me about possibly getting a dx without visible lesions?  I have never had Evoked Potentials tests done.  Should I?  If so, how do I go about getting it?

Just so you know, I have had MANY tests to rule out other things.  Honestly can't remember all that has been ruled out though.

I probably have more questions, but I will stop here as this post is way too long already...

Thanks for any help you can offer me,
Addi

[addicted2harleys]

Thanks for the response, Pablo.  12 years?  Oh my.  My road is at the 5 year mark and I thought that was long.  ;0(  I am truly glad that you finally got answers.

I don't have any options close by.  I have already learned that.  The closest large city to me is Santa Barbara.  I haven't found any help there and that is why I am looking into the LA area.

I am ok with a drive to LA for help.  SF would be much harder for me, physically and financially.

Thanks again,
Addi

[Pablo_Morphy]

Dear Addi,

I can't really add too much to what Quixotic has thoroughly explained (thanks!  Answers like yours and people caring for you are the two main advantages of this Forum!).

I agree with Quix that it definitely pays off to see a MS specialist as soon as possible.  My own road to being diagnosed with CIS/possible MS started 12 years ago in England.  I was given all sorts of potential causes for my symptoms (from 'stress' to 'immature personality', so go figure) until the last MRI showed two old lesions and a bout of optic neuritis got me.  What other options do you have close by, so you don't have to drive all the way to LA or SFO (although once again I agree with Quixotic, seeing a specialist is worth the drive)  

Peace,

Pablo

[addicted2harleys]

Whew!!  Thank you so so much, Quix.  I know you have not been feeling well and I truly from the bottom of my heart am so thankful that you took the time to reply to me.  Thank you.  You, basically, confirmed to me everything that I pretty much or kinda knew.  It gave me goosebumps.  It was kind of like being validated and I needed that.  Your dust bunny brain gave me what I needed....lol.

Thank you for the Telsa info.  I was thinking that the machine I have been using was an older model.  But, search as I did, could not find the 1.0T.  I am a pretty literal person, so I needed an answer for the 1.0T...not 0.1, 0.3 or 1.5...you know?  BTW, the one that I said wasn't done on that machine was on an 0.3T open one, no contrast.  To me, no brainer...disregard it.  All the others were with/without contrast...2 brains and 2 T- and C- spine.

I DID call the MRI lab that did my tests in the last 2 years.  They would not tell me if my scans were with MS protocols or the slices.  Grrrr.  They quoted the confidentiality thing.

You said my neuro is thinking about an inflammatory process.  Nope.  Everything done to help me has been done through my primary.  He KNOWS it is inflammatory, but feels we are in the waiting stage.  He ordered the MRI's and EMG.  Blood tests and breathing tests.  He is the one that gave me the Solumedral and the Baclofin.  He has checked my reflexes and such and does see issues.  I think he truly has taken steps to rule out mimics.  I am currently comprising a list of what has been ruled out.

I have only seen my neuro twice.  The first time he did complete exam and tried to give me Provigil...my insurance denied it.  He did see neuro issues, too.  He set followup for 3 weeks later.  I went to that and saw a student then he came in for 30 seconds and told me to pull boot straps up and he would see me in 3 months.  I can't get through to him and leave messages that don't get returned.  It has been about 8 months now.  One of the reasons I am thinking new neuro.

Urinary issues.  I have had chronic ITI for as long as I can remember.  Seems like every time I go to the doctor for something, they tell me UTI, even when I am going there for something else.  I started with the incontinence about 8-9 months ago.  In the last month I am having bowel probs...tho truth be told, I may have been having probs longer and just thought it was from my meds....and a bit of denial (my lovely friend).

How do I find a urologist that is very knowledgeable with MS?  Should I just go through my approved physician list and call them all and ask?

Anti-Phospholipid Syndrome?  New one to me.  Will go check it out now.  Thanks!  I know I have been negative to Lupus, Sjogren's, Lyme Disease, and HIV.  Am looking into sarc.

My twin is identical.  Mirror image...lol.

I feel better about the neuro shopping now.  I will push forth with red-headed vengeance now.  Thank you very much.  I have been working on getting in at USC and have even considered San Fransisco if USC doesn't come through.  Thanks for the info on USC...you confirmed to me that I am heading in the right direction.

I am sorry that you are not doing so hot right now.  Yes, incontinence is a drag.  I wouldn't wish it on anyone.  Well, maybe my ex-hubby, but only a little!

I plan to stay with this forum.  It has been a world of wealth for me.  I have visited many other forums on the net and have to admit that I turned away from them.  I have no desire to sit in the pity-pot with a bunch of people.  That is what I found.  Never good news and such...just people sitting around doing nothing but feel sorry for themselves.  Don't get me wrong...I definitely feel sorry for myself sometimes.  Just not 24/7 365 days a year...you know?  I want answers.  And, I want to surround myself with others in the same position as me...which I have found here in all of you.

Thanks again,
Addi

[Quixotic1]

Man do you give a fodder for talk and screaming to the heavens!

Uh, Welcome to the forum and thank you for the nice words about our wonderful forum, lol.
I am Quix, a retired physician with MS and author of some of the Health Pages.  I would noramlly like to organize my answer to a new person in a way that makes overal sense.  However, lately my brain has the organization of a dusty bunny.

So, here goes.

Tesla - the Tesla rating is roughly the strength of the electromagnetic field generated by the MRI machine.  It's easiest to just call it the magnet strength.  1.0T is one of the lowest machines readily avaliable these days.  The early machines were actually as low as 0.1T or 0.3T, but they are disappearing.  Many of the "open" machines are quite low and are NOT EVER (IMO) adequate for diagnosing MS.  They are great for large organs and for orthopedic imaging.

If all of your images have been done on a 1.0T machine ordered by a non-MS-oriented neuro it wouldn't surprise me at all if they were not done using the MS Protocol.  Now, the Protocol is a list of the minimum requirements of strength and techniques to be used if MS is being considered.  There is no minimum Tesla strength.  It is just required that the resolution be sufficient to show great detail.  I think this is because many rural areas do not have access to good MRI machines.  I would have no faith in a 1.0T image at all.

The reason for my distrust is that 6 of my spinal lesions were invisible on a 1.5T machine at a major medical center and only showed up once I was imaged on a 3T machine.  3T is the highest strength that is commonly found, however there are some 4T and 5T's around and 7T is being used in research.

The brain is the first thing that most neuro's image.  However, the Protocol states that if the brain MRI does not provide answers, then the spine (both cervical and thoracic) should be done.  All of these should be done without and with contrast.  In your case, with a history of the diagnosis of MS (thus indicating a history of symptoms that suggest MS) it would be unconscienable to not do spinal imaging.

To find out whether the test was done by the protocol you should be able to call the imaging department and just ask.  If it was not followed the time and money was a complete waste.  The Protocol was put together for a reason!  The same thing is true for the "slice thickness".  This should be 3mm or smaller.  Just as important is that the slices should be contiguous - not skipping any areas.  Regular MRIs of the brain, usally looking for brain tumors and such, skip over large areas and would miss many MS lesions.

Your neuro is thinking about an inflammatory process.  Otherwise he wouldn't have given you the Solumedrol.  Is the "normal" MRI what is holding him back?   Do you have any abnormalities on the neuro exam?  He should have given you a thorough head-to-toe exam.  Are your reflexes normal?  

I'm running out of oomph here....  Your history of recurrent UTIs and now incontinence (welcome to the party  :((  )  indicate a probable neurological involvement of the urinary system - a problem extremely common in MS.  You need to see a urologist, preferable one very knowledgeable in MS.  This must be treated!

Your neuro is giving you Baclofen, a med used to treat spasticity and he is not turning over heaven and earth to find the cause???  Has there been a concerted effort to rule out (or find) one of the many mimics of MS such as Lupus, Sjogren's, Lyme Disease, Sarcoidosis, HIV, Anti-Phospholipid Syndrome, etc?

Your twin has MS......Sheesh!  That is a huge clue.  If she is a fraternal twin your risk of MS has jumped from about 1 in 750 to about 1 in 20.  If she is identical, I think the risk is close to 1 in 2 or 3.

Ehh, don't worry about the appearance of neuro-shopping.  The run-of-the-mill neuro is woefullly weak in understanding the variety of ways that MS can appear and is too rule-bound by inaccurate rules.  Many of us have seen way more than 5.  I am currently on #9, though I was diagnosed by #8.  Clearly this guy isn't the one for you.  You may need to drive far to see the right one.  IT IS WELL WORTH A DRIVE TO GET COMPETENT CARE!  I graduated from USC Medical School and trained there at LA County, but it was so long ago, that there has been a full dinosaur extinction in the meantime.  If USC is the one that you would have access to, then by all means get there and get a better work up.  There are many more MS clinics in the LA area.

Okay, I have more to say, but now I am pooped and must deal with my own incontinence.  (It's a drag, isn't it?)

Others will be along to say high and answer the remaining questions about the quality of the workup you have had - EMG, "negative" eye exam, evoked potentials, etc.

Stay with us.  These are good people!

Quix, MD