Anyone out there?

Wondering if anyone out there has the same situation as me? Went into ER with very mild tingling in my groin, a sore neck and a slight headache at the back of the head - thought I'd hurt my neck lifting weights in teh gym (thought I hurt my neck going up a weight category 2 days prior). Did an MRI just to check and several lesions showed up (non-enhancing) - there locations weren't entirely consistent with MS, but I also had a couple of very small c-spine lesions too. They seemed pretty sure I have MS. The physical and cognitive exams have been perfect in several follow up exams, the tingling has gone away and I have had negative lumbar puncture and normal VEP. The only symptoms I have is a bit of minor twitching in my legs - apart from that nothing. I should also mention that I have had several follow up MRIs over the space of a year and no new lesions. Bloodwork normal. Any similar situations or thoughts out there?

[sunshine8]

Hey there.
Yep, my situation is a bit similar.  Had a head CT because of a mild concussion and the radiologist recommended an MRI because of an "abnormality unrealted to the accident". My regular doc ordered it a few weeks later and called me the next day with news that I had multiple (+10) lesions, mostly periventricular.  She sent me to a neuro who did an LP and a VEP and all was negative. My clinical exam was mostly normal, just a slight left hand tremor, and slight off balance issues that I have apparently never noticed. He said it was till MS, but sent me to a specialist who said she didn;t think it was MS, since I had no real symptoms. My regular neuro ordered a second MRI at the 6 month mark and became "alarmed" when it showed new lesions and that some of the older ones were bigger. I head back for my third MRI in 8 months in a few weeks and we are going from there. For now I am "probable MS".

Needless to say, I definitely sympthathize. Finding out you might have MS on "accident" is definitely one way to mess with your emotions. I haven't been on the forum long, but everyone has been super nice and helpful.  There are some great health pages on the site that explain a lot about the disease and people are always around to lend support even if they don;t know answers tospecific questions.

Is the Neuro going to follow up with you at 6 month intervals, or 1 year intervals?

Anyway, just wanted to let you know that there are others out there!

-Amy

[Quixotic1]

Hi, Welcome here.  I hope we can help, but it sounds like your are going to have to go with the "Wait and See" method to diagnosis.  Certainly it isn't unheard of for MS to be discovered while doing an MRI looking for something completely unrelated.  We had a member here, an MRI tech who was getting some experience in on her hospital's brand new MRI machine.  She tossed her fiance in (gently we presume) and the MRI showed classic MS.  He was just becoming symptomatic.  Maybe she'll speak up.

Hey!!!!  Burbanchick!  or Dude, you are welcome, too!

I as assuming since the seemed to run the full gamut of testing that they did a wartload of blood tests to check for the other things that cause brain lesions.  And that those were normal too.

We also know that by the time many people are symptomatic (and from your  description, it isn't clear that the symptoms you had were MS symptoms)  they often have lots of lesions.  So, it could be they picked up your MS (if that is what this is) long before you would have symptoms.  Maybe in the great scheme of things you were going to have symptoms next year or something.

The cervical lesions make me focus in on MS also.  There are many fewer diseases that cause spinal cord lesions.  I am a little surprised that with a couple of them you don't have some specific symptoms.  

Changing of lesions is not mandatory over the course of the first year.  Some neuros would rule out MS in that case, but I feel they are being too rigid.  The disease progresses as it will.  In my case, my first MRI showed a single, small, lonesome plaque in the frontal lobe.  Two years later it was unchanged and had no new friends.  Yet , I have definite MS.

Right now we have two people on this forum who have abnormal and suggestive brain MRI's, but very little in the way of symptoms.  Neither of them have a diagnosis.  I do not know the recommendations in this situation.  If the lesions are increasing rapidly, my feeling is that it would be only prudent to begin treatment.  If the lesions are not changing, I think they would have to follow you closely.

Some people have a benign course of MS throughout their lives.  Let's hope you are in that group.  I am assuming you are 40?

Welcome again, you'll be hearing form others soon.

Quix, MD (not official and not a neurologist)

[JOck1968]

Thanks for the support - yes, they've ruled out usual stuff and seem quite surprised that not much is going on. I am on 6 month MRis, so we'll see what's new in Aug/Sep. I have spine arthritis as well, which was causing the neck pain. Yes, I am 40, and totally symptomless (except occasional twitches in both legs) I guess I'm hoping I've caught something exotic on my travels - I've lived in Asia and got severe altitude sickness (or something like it) in Africa. If I do have it - I do hope for the benign form. I do know a British Neuro (ex professor) that thinks loads of people are walking around with lesions and stuff and never know it - he told me that he's done many autopsies and discovered lesions a plenty! I guess this disease is so difficult to predict - positive attitude seems to work wonders though!!

[6-paq]

Yeah, similar situation here.  Went to neuro for constant headaches and a stiff/sore neck and thrown into "possible MS" limboland after an abnormal brain MRI.

My c-spine MRI and all evoked potentials (VEP, SSEP, BSEP), lumbar puncture, office exams, VNG, Vision Field tests, blah, blah blah have been normal.

Just had a recent MRI 13.5 months after my first and no change.  So, I'm still sitting here in a "wait and see" mode as I have been since February 2007.

In my search over the past year, I have found other issues that are causing my symptoms, and after surgery and PT, I am doing quite well.   My symptoms are very, very minimal.  My large lesion is typical of an MS lesion (I have 2 other tiny ones), so my neuro is following me closely.

I never suspected MS.  I'm 45 and figured that wasn't a possibility. It was quite a shock hearing my neuro say he suspects it.   This forum has been a God-send to me though.

Good luck and I hope you can get some answers soon.

Take care, Pat :)

[sllowe]

Welcome to the forum!

I hope too that your course doesn't progress.  But, I am surprised that you were not officially dx'd w/MS.  Did you ever get a 2nd opinion? Just curious.  A friend of mine (Male as well) was dx'd w/MS and only had 1 incident where his legs gave out on him.

The Neuro sent him for a 2nd opinion and he started treatment and has faired extemely well.  My only concern for you is that if it is "MS" it should be treated as so, and treatment works best when started early in the disease course.  It's even suggested with a clinically isolated event.

Did this Neuro ask you many, many questions about your history? Sometimes we brush things off assuming it's normal, only finding out much later that it wasn't.

So glad you've joined us!
ttys,
SL

[amas]

Hi and Welcome,

I was just diagnosed with MS two weeks ago but now realize I've had it for a long time.  My recommendation is to read many post and see if you see yourself (symptoms) in any of them.  I say this because as I read these post I have found out that things I dismissed for many years were actually related to MS.  Things I made a point to mention to the doctor at next visit and then decided it can't be related to whats going on so then I would scratch it off my list, only to find out it was MS related.

Yes there are  things that are more telltale but MS presents its self in many ways.  I too had the issue last year with the pain in back of head with headaches that lasted about two months and thought it was due to my weight lifting.

My first neuro exam in Sep 07 showed no abnormalities.  Then in March 08 i could not do the tandem walk or close my eyes hands to the side without falling.  (I did though have lesions changes and postivie LP).  

Well to get to my point, keep a journal.  This can help the doctors get a better picture.  Perhaps early intervention with meds. is indicated here.

Anamaria
Anamaria

[JOck1968]

Thanks guys - very interested in your responses. Just to let you know - I'm actually fortunate enough to be being treated by some of the best neuros in America, so I think they're on the ball with things (hopefully). They are comfortable with a wait and see approach because of all the negative results and not meeting the mcdonald criteria for lesions. I am really interested to hear from 6-paq and sunshine how things are going and whether either, or both of you, are taking medication?

[6-paq]

Glad to hear that you are being taken well care of and are being monitored closely.   There are a lot of people in limbo on this board that have really been through the ringer finding a good doctor that will look into their issues adequately.   That's great for you!

I have been doing well.  My symptoms are mild and manageable.  I really think those lesions of mine were found on accident before they made themselves known physically.

My neuro will not diagnose me with a CIS as we have found other issues that can cause my symptoms at this point.    Since MS is diagnosed by excluding other diseases, he can't be sure that what I'm experiencing is from MS or those other issues.  As of January 2007, I have found a whole slew of stuff going on.   I've had surgery and PT to take care of those issues and am doing well.  I am improving and feel the best that I have in months since treating those issues.

Given the fact that I have normal neuro exams, normal other testing and my brain MRI is stable, he is putting me in that "wait-and-see" mode.  He said if it is MS, it will make itself known.  But, at this point, he can't diagnose it.   I had really expected to see some difference with my repeat MRI.   I HATE having this unknown hanging over my head.  But, I'm still status quo.  I figure at this point, I have to make the most of how well I'm feeling, because I never know what the future holds.

I am on no prescription meds except for Lexapro, which I am now tapering off and an eyedrop for allergies.   I take OTC vitamins/supplements.

My neuro will treat my symptoms as needed, but I haven't a need for medication for other MS-type side effects at this point.  

How do you feel about your doctor's "wait-and-see" approach?  

Take care, Pat

[JOck1968]

Personally, I'm all for it. I do feel almost totally normal and given the negative results etc, I'm happy to wait it out. I know the research says get on the meds asap after a CIS, however I'm also fairly sure that there's a boatload of people out there with lesions and never get any real symptoms. I have everything crossed that, if i have it, it's benign. I do know that the neuros were slightly surprised that I came through all physical and mental exams 100%, and tests all normal. The negative lumbar is an interesting one - apparently only about 3% of definite MS patients have a negative LP - the remainder of false negatives are caused by poor lab conditions (apparently). How do you feel about it?
I am also taking the opportunity to try homeopathic medicine - which has been interesting too! If nothing else he healed my planters wart! :-)

[sunshine8]

My neuro has not put me on meds, but we have preliminaryily discussed it at my last visit 4 weeks ago.  He is really waiting to see what this next MRI (in 3 weeks) shows and then says we will go from there. Regardless of new lesions or not, he is probably going to give me a refferral to another MS center because of the change between the first and second MRI. Also, while none of my symptoms to date have been "troublesome", it is evident that they are there. I would have never picked up on them without the discovery of lesions on the MRI. I have a left hand tremor, balance issues, some very sporatic dizziness and have developed some mild headaches. I have always been healthy and am generally not one to go to the doctor unless I am pretty sick. I have always been very athletic. The accident that I had that led me to get the original CT scan in the ER was unlike me. I was running and "tripped" and apparently used my face and head to stop myself. Other people that were with me said that my legs looked like they just gave out. Thinking back I remember telling the ER doc that my legs all of a sudden felt like spaghetti when I went to plant them. My Neuro now thinks that is due to whatever is going on with the lesions.  It is all funny how it has come full circle.

I'll keep you posted with what happens in the next few weeks. One thing I have learned is that I am really trying to listen to my body and notice things that are going on with it. I have started keeping an abreviated timeline of sorts, and it has been very helpful.  I too know that it is important to get on the drugs early if it is MS, I just would like the docs to figure it out. My doc is taking the attitude that waiting one more month is reasonable before assigning a 33 year old a diagnosis of MS.

Did your docs say to come back at any regular time frame?

[JOck1968]

At one point I was getting monthly MRIs - and then 3 monthly and now 6 monthly. I also get full exams and blood work ups. So far - nothing new and they haven't seen anything enhancing, even when they discovered it in the ER. Will keep you posted - it's great to come across people with similar situations to me. Anyone else I've met is either on DMDs or is not in great shape.

It's funny how the US and the UK differ with MS - over here the average neuro is quite keen to get you on DMDs asap while in the UK they're a bit more cautious.