mri over time

[busymom1234]

I am in my 40's and have had symptoms come and go over the last 10 years. I'm not diagnosed. Just to list a few: tremor, major muscle twitching mostly in calf, thigh and sometimes chin, forgetful, difficulty picking words, tripping over foot, eye pain, numbness, hot patches, etc. I had an brain mri done 6 years ago and the radiologist stated that I had approx. 6 2mm lesions in the bilateral periventricular white matter. Since that time those lesions have remained mostly unchanged but now the newest report reads that there are at least 9 of these small lesions. Over the last few years I've had distinct periods where my symptoms are much worse followed by times when I'm feeling almost normal.
My question is, is it possible to have ms and have no substantial change in my mri over that many years??
Thank you for your responses. I've gained a lot of insight into this disease just by reading everyone's posts. Thanks to all of you!
busymom1234

[busymom1234]

Thank you for all the information. I appreciate the time that you put into it!

I've only seen one neuro and he does not specialize in MS. At each visit (3 in 3 years) he would point out what he found, like tremor in one hand, rigidity in arm, hyper-reflex in legs, etc and he would mention that I might have a mild case of MS. As each MRI came back with only minimal change (if any as the neuro said the new ones could have just been missed during the last scan??) he would not commit to a diagnosis. I did have a LP and that was negative. When I feel better I start to think that I must be crazy, and then something hits and I have weeks of excessive tiredness and mind melt and muscle twitching. Then I start wondering all over if something really is wrong???

I have had one thing happen that I didn't mention to the neuro because I thought that it souinded too crazy. Maybe someone here can relate to what I've experienced and tell me that I'm not imagining it! I got out of the shower one night and was toweling off my upper outside thigh area when I "felt" it along the inside of my calf. This went on for a couple of days. Another time I was itching just below my bra line in front and it felt like fingers were running over my back shoulder blade. So basically I touch one area but feel it in another. Crazy I know!

Thanks again for your support.

busymom1234

[Rena705]

Hi Mom and Welcome to the MS Forum!  While we are not able to make any diagnosis, we are able to point you in the right direction so that you will be able to get a diagnosis on your own with the help of your MS Specialist.

To answer your question "is it possible to have ms and have no substantial change in my mri over that many years?", simply, yes.  The question is how much possible change has occured that has not been seen in the MRI?

My question to you is was it a regular neurologist or radiologist that read your MRI or was it an MS Specialist?

An MS Specialist is trained to study your MRI and has the experience to discern differences in your MRI that a Neurologist or Radiologist is not.  This ensures that you will have the proper results at the start of what could be a long road to a diagnosis.  Were you able to obtain a copy of your MRI for your own records?  This might be something you may want to do so that if you are able to see an MS Specialist, you will have an MRI for comparison when the specialist does another MRI.

When you go to see your MS Specialist, the first thing that he/she will want is a full history.  It would be helpful to both you, the patient and the doctor if you were to make up a timeline of your symptoms ahead of time.  This will give the doctor a better picture of your symptoms and will take the pressure off of you to remember everything in a stressful situation.  

The next thing the Specialist will do is a full in-office Neurological Exam.  It is imperative that this exam is done and if it is not done it is up to you to be pro-active and INSIST that this exam is performed.    

This is a head to toe exam that may include requests for you to walk across the floor heel to toe, you will be asked to touch your finger to the doctors finger suspended in front of you and then to your nose with your eyes closed, you will be asked to rub your heel down your opposite shin...nothing too scary, they just seem a little strange.  A good exam will probably take 30 minutes or more.  The results of this examination will tell your Specialist about your Mental Status, Cranial Nerves, Motor Skills, Coordination and Gait, Reflexes and Senses.  This in office examination is crucial to the possibility of a diagnosis of MS.  

Ok, so now you have had an MRI and an in-office examination and the results are inconclusive...What next?

Your MS Specialist may suggest a Lumbar Puncture.  It sounds scarier than it is and most people have no difficulty with it at all.

During the Lumbar Puncture the MS Specialist will extract a small amount of spinal fluid from your lower back and it will be studied for the presence of Oligoclonal Banding which is present with MS.

If there are no Oligoclonal Banding a positive IgG index will suffice as a positive LP.  The fluid will also be studied for a myriad of other diseases as well.

If MS is highly suspected but there is not enough evidence for a diagnosis then Evoked Potential testing is brought into play.  Evoked Potential testing measures the time it takes for a nerve to respond to stimulation.  There are three types of tests used to obtain evoked potentials, Visual evoked, Auditory brain stem evoked and Somatosensory.  Each response is recorded from brain waves by using electrodes taped to the head.  Visually evoked response is the most commonly used to diagnose MS.

These are the tests that are used to try to discern whether a diagnosis of MS can be made or not.  It is very important to remember that a good MS Specialist that suspects MS but can find no indication, follow up with the patient at 3 to 6 month intervals, for years, if necessary, to gain further information.

I have been told many times that MS is damaging nerves all the time and that it should be treated as such.  By having the proper treatment as stated above you are giving yourself the opportunity of having the proper treatment with disease modifying drugs that can slow down the disease should you be diagnosed with MS.

I hope that I have been able to shed some light on the process that needs to be taken in the journey to the possible MS Diagnosis.  Please remember that we here on the forum are a great group of people that are here 24/7 should you need to rant, rave, laugh cry, whatever you need we are here.  If one of us can't answer your question, either another person can or it will be looked into for you and we will do our best to find an answer.  Please keep in touch with our group and let us know how you are making out ok?  We welcome new members with open arms and you may have something to offer someone else as well!

Lots of Hugs,

Rena