Where do I go from here?

[klewis341]

I have been seeing a MS specialist for the past 3 yrs - have had numerous tests w/ the bottom line being i have 6-7 lesions in my parietal lobe area - one large that seems to be causing all right leg issues - a normal eeg and 1 o-band found in my lp done in March (I previously had an lp back in 04 w/ no o-bands).  I have twitches, burning, muscle spasms all little things that are there - but not quite to being painful.  

My MS spec says she doesn't have enough to diagnose me - no space and time dissemination - because my mri's have been unchanged in the last 4 yrs w/ all the same lesions - although i now have one o-band - she says maybe benign ms.

What would be your opinion of the next step of action to take?  I'm sort of at a stand still I feel and not sure where to go.  Thanks in advance for your opinions,

Kristin

[klewis341]

Thank you very much for your comments/thoughts.  I did read the article in the link you provided Quix and while I did not understand all of it - I got the jist of it - I do truly believe that I have something going on that is altering my brain functioning and not necessarily anything physically.  I know one question my dr keeps asking me is if i've fallen lately.  I did once down my stairs - but other than that not at all.  

I am happy w/ my neuro who unlike my first neuro, doesn't just think i'm crazy, but i have real things going on w/ me and my body - they say to have patience - i just thought that after four years of going to dr's someone would have a concrete answer for me - i guess that's not in the cards yet.  

Thanks to everyone!  Kristin

[santana8]

I too am in this boat with you! My dx is ADEM with nothing new showing up in two years. I was reading sunshines comment on the neuro saying he thought it was ADEM at first but then changed his mind after new lesions showed up in six months. I never got my first MRI until five months after onset, so acually I don't really know how long it took for those 10 lesions to show up on my brain. I can tell you that I had the origional symptoms straight for 6 months, So I don't really know if the lesions   were developing over this entire period , but improvement started  happening at this  point and has continued to improve over the whole two years. The attack hit me like a tornado and has improved slowly all together over these two years. This kind of goes along with what my neuro says about all of my lesion seem to be of the same age. I do know that in ADEM that the origional symptoms can linger for a while and still not be considered a separate attack. And also there is also another form of ADEM  that has multiple relapes, and I think it is called multiphasic ADEM. Were the new lesions that showed up in the brain in an entirely different location and did they cause new symptoms that were not there before? If you google multiphasic ADEM you can probally find out more about the ourse of it!

Santana

[sunshine8]

Thanks Quix! My Neuro was actually thinking I had a one time demylenating event like ADEM after the first vist. He thoght that MS was not a real consideration at that point after the LP, VEP and bloodwork all came back negative. He ate those words whent he the 2nd MRi showed more lesions over the course of 6 months.

I tried to pay more attention to my possible symtpoms in the last few weeks after he told me to keep a journal for this month before I go back and see him. I can generally say that I feel more "stupid", but it has been hard to describe it on paper. I feel like my memory isn't the same and I am not as quick with thoughts as I once was. Then again, I also work long hours at a stressfull fast paced job, so who knows.

It would be interesting to investigate the cognative implications of MS.

Kristen: It sounds like you Neuro is following your case with regularity. Thats good. i do not profess to be knowledgeable enough to give advice yet, but I have learned that this forum is a great place to hear others experiences and gain advice. Good luck!

[Quixotic1]

Okay, those answers give me a little more to go on.

First, the overall diagnosis.  The first is a "currently benign" course of MS.  I disagree with the use of the diagnosis of "Benign MS" from the beginning.  But, we all know that it can progress benignly.  As for the dictum that lesions should change in four years, I'm not knowledgeable enough to say that that makes MS unlikely.  My brain MRI has not changed in 3 years and I have a confirmed Dx of MS.

It brings up the more rare diagnosis of ADEM - Acute Disseminated EncephaloMyelopathy.  This is a one-time (usually) event caused by a viral infection that looks initially just like MS, except that nothing more ever happens.  With time the brain lesions.

If you have had any sensory symptoms in a limb I would think that an SSEP would be helpful.  You have had negative Nerve Conduction Studies - they would be normal in MS.  The SSEP - Somato-Sensory Evoked Potentials would should if there is demyelination between the nerve root of that limb and the brain.  A positive there would be further evidence toward MS.

I believe you must appeal the decision by your insurance to deny the spinal MRI (Not just cervical, but thoracic, too)  That is just such a huge part of the puzzle.

And you brought up a topic that I have been wanting to discuss here.  That is one that showed significant cognitive decline or deficit in patients given a diagnosis of "Benign MS."  "Benign" MS patients  were defined as having minimal "locomotor" (moving function) disability after 10 years.  The mean duration of the 61 patients' disease was 22 years.  They tested these patients using standard neuropsych tools.  What they found is that two thirds of the patients "were not cognitively normal."  They had measurable defects in various areas of cognitive function.  About 1 in 6 was "significantly impaired."  This is very interesting because the emphasis is always put on how well you walk around, not how well you are thinking.

The advice coming out of this study from the Czech Republic is to alert neurologists to this type of disability, especially in a group of people formerly felt to be "off the hook" with regard to damage from MS.

http://www.docguide[.][com]/news/content.nsf/news/852571020057CCF68525737C006AAD1E

Take out the brackets.

But, if this is happening in "benign MS" patients....what is happening in the rest of us who do have growing disability?  It is actually pretty frightening to me.

What we don't know is whether use of the CRAB drugs would have an effect in forestalling the cognitive loss.  I will keep this question in mind as I read.  Cognitive loss has been linked to MS fatigue, but I don't know if it is really the result of demyelination or whether it is a result of direct axonal degeneration (nerve death separate from demyelination) or whether it is also "gray matter disease."  Gray matter disease in MS is getting more attention lately, as one of our members noted recently)

Basically, I don't have any better answers than your neuro.  The situation of having the MRI evidence, but not the symptoms is a new one and I haven't seen anyone address it.  And the question of whether use of the Disease Modifying Drugs will delay the progression of cognitive decline also need a lot more attention.

Your neuro seems alert and attentive.  That's great.  I assume you have had a thorough work up for all the MS Mimics?

I've gone on and on.  Sorry, but you give us the flip side of things to know about.  

Sunshine - We have ended up having our discussion about Diagnosing MS with too few symptoms or none, here.  But I will still answer your post that I asked you to do.

Quix

[klewis341]

Hi - thank you all for your opinions - as far as the testing goes - I have had the nerve studies done which she said were normal - and the vep's were normal - done at two different times.

I failed to mention in my first post that the majority of my issues are cognitive - i practically failed my neuropsych testing scoring below 8% in retention and recalling and below 25% in all other categories - it also showed mild depression - which the psych said was probably still from when my twin brother passed away a year and a half before the testing was done.

My neuro does see me very regularly and mri's are repeated if not yearly, then every six months.  She wants to have me do mri's again in Oct of brain and cervical - I have never had a spinal mri since my back surgery in 2000 - she tried to get one done in Feb this year however my insur denied it.  At this point she said she could treat some symptoms but didn't want to put me on any crabs because she feels like they'd do more harm than good.

Another point she brought up about my unchanged mri's (which I actually had the first done in 2004) is that with ms they do tend to change periodically, and mine have not changed in the past 4 years - so she thinks there could be another reason for them - however i haven't come up with another reason this whole time.

I have had fatigue and she sent me for a sleep study - which it showed i had mild sleep apnea - not enough for insur to cover anything for it - but it showed 214 periodic limb movements in my legs during the night - so i am now on requip for rls.

I hope I've answered all of your excellent questions - thanks for the insight - it really does help.

Kristin

[Quixotic1]

I see the dilemma.  What do your spinal cord MRIs show?  You don't fulfill the McDonald Criteria yet, BUT there is a huge difference between establishing the definite diagnosis and deciding to begin treating.

You have a goodly number of brain lesions which are unchanged in 3 years.

Spin lesions = ??  Spinal lesions have a larger importance in the disease than a lot of neurologists realize.

O-bands have increased from zero to 1.  This is what would be expected.  O-bands are gradually acquired during the course of the disease.

Symptoms in one place - for the whole 3 years?  Are there any objective abnormalities seen on the neuro exam, especially in your legs?

Has your neurologist done an SSEP on that leg?  Have you had a VEP?  These are evoked potentials that point toward MS when they are positive.

The EEG is expected to be normal are may show mild, slowing abnormalities in MS.

Have you had EMG or Nerve Conduction Studies in the leg with the abnormal sensations and spasms?

Do you have any of the nonspecific, but common symptoms like severe fatigue and heat-intolerance?

There are other indicators of MS than symptoms and MRIs.  If other testing was positive, then serious consideration should be given to beginning MS meds.  These meds have been shown statisically in a good percentage of patients to slow the onset of definite disease.  There is controversy among neurologists about treating what some insist on calling "Bengin MS."  A small group, led by the Mayo Clinic, believe that in people with an early benign course that everyone is better off just "watching."

My problem with this view is that the MS meds have been documented to be most effect early in the disease.  Two years of the meds early is significantly more effective than two years done beginning 6 years later.

So, I don't have a perfect answer for you except that, in your situation, I would seek a second AND a third opinion about where you stand.  I would love to hear your answers about the extent of testing you have had.

Quix, MD (unofficial and NOT a neurologist)

[santana8]

I am in a similar situation! I had a sudden onset of vision dysturbances and confussion two years ago. I have been seeing several eye specialist, a neuro- opthalmologist, several other specialist and a neurologist for the whole two years. I have about 10 white matter lesions that are located in the corpus collosum, parietal and occitable lobes. I also have a visual field defect and several other symptoms related to the nerve damage. My LP done one year ago was negative and showed no O banding. I have  had repeat MRI's every six months for two years which have showed no change to the origional lesions, no enhancement, and no new lesions. I have not had any further new attacks, only residual nerve damage from the origional attack. My neurologist has been doing these repeat MRI's  to watch for MS. If I have anything new then he will most likely dx me with MS, but for now my dx is ADEM. It is a monophasic( one time) illness that is indistinguishable from MS in the onset. My neuro has never mentioned anything about benign MS, but I have read about it some. He seems confident that either I had ADEM or it will prove to be MS. He said only time and space can determine for sure!  Has your neuro done any repeat scans? What other symptoms besides the leg do you have? I am interested in your case because since I have been on this forum, I haven't ran across anyone else who has been watched longer than I have been with still no definite dx. I am sure there has been more, but I have not ran across them yet. I am interested to find out more about your case!

Santana

[jensequitur]

I'm not sure - I'm no expert! But according to the McDonald criteria, you only need 3 or more periventricular lesions to be diagnosed with MS.

Here's a post that Quix wrote on the McDonald criteria - it's easier to understand than the usual clinical information.

http://www.medhelp.org/posts/show/509801

I also believe there's no such thing as benign MS.  People with MS inevitably progress, whether it's perceived by the doc or not.

Are your symptoms enough to distract you from daily life?  Are you having problems with cognition, or mobility?  The drugs that help with spasms and paresthesia tend to affect your life in other ways (making you weaker, or tired, etc.) so I wouldn't recommend it unless it was really bothering you.

[Deb61]

Just a quick few questions.  When does your neuro want to see you again?  How often does she repeat MRI's?  Do she plan on treating benign MS, if that's what she thinks you have?  

There's nothing "benign" about benign MS.  I really hate the name of this type of MS.  Once you have lesions somewhere, you probably problems with something.  

I've heard that the earlier the better when treating MS.  You don't want another attack that leaves you with other issues.  I hope this neuro is following you closely.  If you're not being seen at least every six months, I would consider changing neuros.  

Deb