New member - MRI indicates possible MS
 

Hello everyone. My name's Sabrina and I posted this yesterday in the new member welcome forum and then realized that it was probably not the best place for it.

I'm a 26 year old female grad student in psychology. I few weeks ago I participated in an MRI study because my friend was running it and they were going to pay me. I got a picture of my brain - so cool for nerd like me!

Anyway, flash forward to this Wednesday (7/25). I received a call from the student health center because they found something weird on the MRI and wanted me to come in to talk about it. After all the mumbo jumbo about how the MRI was just for research and not for diagnostics, I shouldn't take it as fact, ect., they said that the study neuroradiologist found "innumerable subcortical and deep white matter hyper intensities extending superiorly into centrum semiovale consistent with demyelinating process such as MS."

So I have a referral now to a neurologist to get another brain MRI with and without contrast to see if that can either confirm the findings or figure out what is going on. As far as I can tell, I have no discernible symptoms that are out of the ordinary for me or that are indicative of a "flare up" (from what I can tell).

So what do you guys think is going on? What sort of questions should I be asking the neurologist about? Logical next steps for me? I appreciate any opinions!

1.) Don`t panic!

2.) If they appear to have found something? a follow up is a good plan, even if you aren`t having symptoms.

Hi Sabrina and welcome to NT! I really don't have any answers, but wanted you to know you're welcome here and please keep us posted on your neuro appointment. All the best.:hug:

hello and welcome! :hug:

Breathe, just breathe. Please know that some MS patients can have dozens and dozens of lesion and no symptoms. others can have 3 lesions and be severely disabled. So, how many lesions you have shouldnt make you panic, where the lesions land is what you want to know.

Please know that there are more than 100 diseases that can mimic MS including lesions in the brain. Lyme, Lupus, Ebstein Barr, Sjoghrens, Devics, porphyrria...it goes on and on. The MD will start with the easy stuff that can be shown in blood work. vitamin def, ANA (arthritis titer) Lyme, Lupus...This will take care of a great number of possibilities B12 being off can do this to you as well as migraine syndrome, drug abuse and other exposures to chemicals and or pesticides. High lead, high mercury...the list is a long one. Trust that the MD will be working hard to rule out as many as he can in a simple blood test. Then if all that comes back normalish, we move onto the MRI.

Some MRI machines are not as strong as others (open ones are less powerful) and some closed ones are only as strong as the open one. Most today are 1.5 telsa strength, but there are companies out there using 3.o machines. If I took a pic of you on an open MRI and then used a 3.o machine it would look like two different patients. They take the imagines and look at where they are laying, and if you are having any symptoms. Some folks (Jack Osborne) have no idea till they wake up blind because a lesion attacked their optic nerve. Others only have fatigue and periods of being off balance. Having MS is like having a fingerprint. Yours will not be the same as mine. Sandra may have balance issues, and Jane may have blindness, while Connie has cognitive issues and Missy is extremely fatigued. So, please dont allow others to compare their disease to yours. If you dont have this or that, it doesnt mean a thing.

Can you make it to an MS center? They have ones located around the USA. Go to MS.org and look up one near you. Many of us go only to get diagnosed and then use a local neuro to handle our care.

Im sorry you found yourself on this long road. its not one that will go quickly and be filled with definite answers. You will hear a lot of maybes and could bes in sentences headed at you.

Hang in there. :hug:

Hi Sabrina, Welcome to you.:) Wow, I usually like surprises, but not that kind...sheesh.

If it is MS, catching it before you've even had a symptom, may be a blessing in disguise. There are lot's of bandaid type meds out there, for MS now. I hope one of them will stop your MS in it's tracts.

Check back with us soon to bring us up to date and stop in anytime to chat and for our support.:hug:

Is your brain the only thing they are going to MRI? I went in with what I thought were back and neck problems, and got a lumbar and cervical MRI. If I hadn't gotten the cervical MRI I would not have started down this path with the neurologist. The lumbar was normal, the cervical had 2 lesions. The followup brain MRI was normal. Turns out it wasn't disk problems at all.

I'm not sure what ordinary procedures are, but if I had just had a brain MRI they would have found nothing. This obviously isn't the case for you, but something to keep in mind is that if it is MS you may have lesions in places other than the brain too.

I will echo what Sally said, if this is MS and they caught it early that is a good thing even if it is shocking. I've been dealing with weird symptoms for a long time but had no idea what has been wrong with me. If my diagnosis is MS, it is about a decade later than it ought to have been.

I'm about a month and a half since the back problems now. So far for me the process has been:

1. Lumbar and cervical MRI without contrast (at the ortho)
2. cervical MRI with contrast, brain MRI with and without contrast (at the ortho)
3. Blood work (first step with the neuro)
4. Spinal tap next week since blood was mostly normal

From what I've been reading, everyone's diagnosis path is a little different. With problems on the MRI, they should take your diagnosis seriously at least.

Thanks for the support! Luckily I'm a very pragmatic person, so I'm not freaking out or anything (yet), but I compensate by collecting as much information as possible so I can be prepared to whatever heads my way.

Dejibo - My research MRI was done in a closed machine that is only 6 months old. The description says that it is 3T, but I don't know if means tesla or something else. My referral was actually to an MS center - bonus of being at a large research university! It is actually two buildings over from my campus office, so that is convenient at least. They were sent the images today and I was told that I will get a call to schedule in the next week or two after somebody takes a look.

Yeti - The brain MRI with and without contrast was the only thing that was recommended by the guy who looked at it before, although my PCP said that they might do one that focuses on the brain stem or spine. So who knows at this point. They can take my blood and stick me in a giant magnet as much as they want, but I'm uninterested in a spinal tap haha.

This is such a nice community, I'm glad I stumbled on it in my Google search :) I'll keep updating as I find out more...

Be careful if they are putting you in a 1.5T machine and comparing it to the 3T results. The 3T will pick up MUCH more detail and image vs the 1.5 (half the strength) Apples to apples is always the way to go.

I wish you the best. :hug:

Hi Sabrina,

My name is Carol Moore. I have had MS since 2008. I have recently had a procedure done called the Atlas Orthogonal to fix the flow of my cerebral spinal fluid (CSF}. This procedure is not new but Dr. Scott Rosa is the only person in the world using the FONAR upright MRI diagnostics to develop the treatment protocol that will work for you. My suggestion to you is to contact Dr. Damadian's assistant Ellen at FONAR and request that you get scanned. Your results will be sent to Dr. Rosa for analysis. They are looking for a structural abnormality in your vertebrae that is preventing the CSF to flow. Something as simple as whiplash can cause an abnormality. In my case, I broke by C2 vertebrae at age 18. If Dr. Rosa sees a structural abnormality could be addressed by the AO Treatment, you will go to Rock Hill, NY Monday - Thursday. The first day will be your initial adjustment and then the next three days will be check ups twice a day to ensure you are holding the adjustment. The treatment does not involve drugs and it is completely painless. You will experience minor muscle soreness as your spine adjusts.

Since receiving my treatment on June 18, 2012, I have stopped taking my MS drugs and all of the other support drugs to enhance comfort or endurance due to the MS symptoms. Stress and heat are big triggers for my flares. This month I began a new job and put in very long days. Instead of getting exhausted and entering a new flare, I have gotten stronger each day. I tell you this because this month has convinced me that I am healing.

The reason Dr. Rosa's treatment will work is because there is a theory that people like me with MS have a structural obstruction forcing my CSF fluid to back up into my brain. My body then believes there is a foreign body that requires attack, hence the lesions. If you fix the obstruction, the attack stops.

The sooner you pursue this, my opinion is that you can avoid the MS symptoms, drugs and painful diagnotics used to diagnose the disease (like a spinal tap). As an added benefit, if you suffer from back pain or headaches, they will be greatly improved if not completely disappear.

I hope this helps and good luck.
Carol

Wow Carol, thats fantastic! I would love it if you could start a new thread, and tell us about what you went thru, what is the proceedure, and perhaps tell us some places that we can go to look up this stuff. I love when folks say "I feel better, so I walked away!" but the skeptic in me says "show me" isnt that awful? I am facinating by your story and would love to hear more. I see a chiro on a regular basis and have had the xrays and such and my vertebrae are in perfect alignment now. I go back every couple of week to stay in alignment. Does normal chiro care count? Would love to see a new thread on this.

Well it isn't like I'm looking forward to the spinal tap, but if the spinal tap is what needs to be done to get some answers then I'm getting a spinal tap. I guess what I'm saying is, don't rule it out just because it sounds scary. If they need it to diagnose, I'd suggest you get it.

Having said that, I know not everyone has to get a spinal tap for a diagnosis. Everyone's path is a little different depending on the doctor and what results they get out of the various tests.

Right, of course I won't rule it out. Obviously I'll do anything that they need, but I'm just expressing my preferences! :D I've heard from multiple people that it isn't a bad as it sounds...

some folks lay down, grit their teeth and say "im ready!" and the MD says "we are almost done" others lay down, grit their teeth and moan thru it. It helps if you really try to relax those muscles. it helps if they dont have to dig thru 100 pounds of extra weight to find the sweet spot. it helps if you find your happy place and are able to distract yourself. If you keep a severe headache afterwards they will do what is known as a blood patch. this can happen if the hole doesnt close correctly and you leak spinal fluid. it can cause a monster headache. So, LAY DOWN and stay down after the test. let your body heal.

Wishing you the best of luck. :hug:

Hey I understand, really I do. I audibly groaned at the neurologist when he said spinal tap! :)

Spinal taps can be good and bad. I have seen one done on my mom and it was over in a few minutes and she had next to no pain. Mine took about 90 minutes over two days. The doctor on the first day couldn't get the needle in because my back muscles were spasming and locking up the needle. I had to quit and come back the next day for a different doc to do it.

As for the CSF flow fix theory, if "fixing your CSF flow abnormality" cures your MS, I tend to doubt that you actually had MS. You more likely had a CSF flow abnormality that was mimicing MS. If MS was caused by CSF flow problems, it is likely that we would have figured it out by now and the docs wouldn't still be searching for a cause. Like others, I would appreciate more info in a separate thread because the idea is interesting to me, but color me initially very skeptical. This sounds alot like the "stopping drinking diet sodas cured my MS" type of theory that we see all the time.

im so sorry my autn has relapsing remitting MS...PT is a good key

Hi bowdowntobri,

There are some who get diagnosed with Clinically Isolated Syndrome (CIS) which is a first Neurological event and could possibly turn into a definite diagnosis of MS.

Several years ago there was another term that popped up due to what has happened to you. People have gone in for a MRI which had nothing to do with MS and have been told the MRI is suspicious for MS.

The term is Radiologically Isolated Syndrome (RIS). There are differing opinions, in the medical community, if treatment should be started or simply watched to see what happens. Many of those with RIS have no Neurological symptoms.

Oh goodness, even more things to thinks about. Thanks for telling me Snoopy, I hadn't heard of either of those before!

Hi Sabrina, and welcome to NeuroTalk! I hope you get some real answers soon. :)


It will work because of a theory? :rolleyes: Add me to the list of skeptics. Glad Carol got relief, but there are no definitives when dealing with MS.

If you haven't already, look up the McDonald Diagnostic Criteria for MS. I was given a CIS diagnosis initially...probably would have been RIS now that the term exists. I got an MRI for hearing loss and they found 2 lesions (high intensity or bright spots on the MRI). I had one "event" (the hearing loss) and only 2 lesions, with a negative spinal tap. So the doc told me I didn't have enough lesions or lesions in the right spots to satisfy the diagnostic criteria.

I didn't understand (or even know about) the McDonald criteria at the time, so I thought she was saying that the lesions didn't look like MS. So I spent the next two years convincing myself I didn't have MS. Then after a followup MRI showed more lesions, she suddenly said the equivalent of ok, you meet the criteria now, I can call it MS...what treatment do you want to try? What she meant was that I now had 3 or more lesions, with some appearing separated by more than 6 months...so now I met the criteria.

BTW, I don't think I ever responded to your initial questions. The description of your MRI sounds exactly like mine did...high intensity white matter spots. As Dejibo said, that can describe any number of diseases including demyelinating types like MS, or other things like small vessel disease. It isn't uncommon to have lesions without symptoms. I had an initial episode of hearing loss and at that time I had 2 lesions. Since that time, over the course of about 7 years, my lesion count has jumped to 3, then 7, and now around 15, all without any further events that I would recognize as a "flare". I have a few things now like increased sensitivity to excess heat, and I think I am slightly more forgetful, that could be MS symptoms, but that could just be me getting old too.

So go in with an open mind and understand that diagnosing MS is very much a process of elimination where other things are ruled out. There is also a subcategory of MS unofficially referred to as benign MS, for people who have very few symptoms and who don't progress very rapidly. I would put myself in that category despite my increased lesion count, because the lesions so far have not led to any flares or increased disability.

Good Luck!

Well it has been a few weeks now, but I finally heard back from the neurology clinic I was referred to and have an appointment at the end of September. I hate just sitting around waiting for answers, but it seems like there might be a lot of that in my future...

Welcome to the club...not...:D :hug:

Hi .. I can't remember if your MRI was done with "contrast"...
also how are you feeling..?

Hi Sabrina, it sounds to me as though you're approaching this in a good way, gathering lots of information, not freaking out, etc. You'll hear lots of opinions, stories, suggestions...and you'll probably we weighing them and sifting through.

If it DOES turn out to be MS (or any of the other options), catching it before you experience any symptoms has to be a good thing.

I hope you stick around and keep us updated. You're part of the community now, and we're INVESTED!

No carbreezy, my initial mri was not with contrast because it was just supposed to be for a research study. They did, however, recommend that I get another one with contrast this time around. As far as how I'm feeling - not so great. I've been exhausted and been having crazy headaches for the past few days. I'm gonna just say that it is stress because school is starting back up this week and I have a lot to get ready for the new class I'm teaching. Plus I like stress better than any other explanation :)

I did find out that I am seeing the director of the MS clinic I was referred to, so that makes me feel better than seeing a resident, which can happen in a research hospital. I've been reading some of his papers (because I'm a nerd haha) so hopefully we can have a good talk.

And yes Blessings, I'm sticking around. It is nice to bounce ideas off others and it is easier to have grounded people to talk to rather than my friends who are just freaking out. Not helpful, although I do appreciate their concern.

Welcome to the gang! Hope you are diagnosed as having nothing of significance, but if you do - you will find we tend to be a bit goofy, extremeley caring and often full of helpful tips & latest knowledge -in a an easily accessible place.

Plus- we are all extremely good looking :D

FINALLY going in to see the neuro tomorrow. At this point I'm pretty excited to see what he has to say and figure out where I go from here!

Just keep an open mind and know that you don't have to make any decisions on medications or treatments immediately. Give yourself time to absorb what you're being told. Research it and ask questions. Don't let them hurry you out......you're paying them for their expertise. You're the boss in this arena. I hope things go well for you. :) Be sure to post back and give us an update.

Great Bow, let us know how it goes. :hug:

Great advice Kitty.!!

and I too have been thinking about you Bowdowntobri... !
...So you are just going to the Neuro tomorrow..? Have you had your second MRI with contrast yet..? ( i can't remember..?) keep us posted... PS. so far the Neuro specialist said my 5 highlighted Lesions are not looking like MS. but remember i had the spinal tap and all levels were normal "nothing elevated" at all... sooo ya never know.:)

So I had the neuro appointment this morning! It lasted about two hours - he took a complete med history, had me walk around to test my balance, checked all my reflexes, etc. Everything came back normal, except that my pupils react differently to light, which apparently is odd. I did get the chance to look at the MRI results from the research study, and based on that I have upwards of 20 lesions, although none in the areas that are typically associated with MS. Is that a lot? It seems like a lot to me...

I got blood work done after the appointment and will go get another MRI with contrast this Wednesday. I'm happy that at least I won't need to wait too long for this MRI, but my follow up appointment isn't until the end of November. Since I don't have any symptoms he doesn't seem to think that I am at great risk. Obviously he wants to look at the blood tests and see if any of my lesions are active or increasing in number, but it is nice that he at least told me that I shouldn't be overly concerned at this point.

For now I will think happy thoughts...:rolleyes:

First of all, I add my welcome to the group Sabrina...

Second of all, though you're asymptomatic, it doesn't mean you're in the clear, MS-wise. Glad you're seeing someone at an MS center.
Keep a journal of symptoms (if any), and a list of questions for the neuro.

I like your attitude...it's important to be pragmatic at this stage. I also had lesions in areas of the brain that didn't fit with MS...but loads of symptoms. It took me over three years to get a diagnosis...so it does take time and it's a process of elimination. The last MRI showed I have 26 lesions, with one also in the cervical spine. Still, my neuro considers my case to be "benign"...tell that to my spastic legs & all the other body parts that don't work right:rolleyes:

Keep us up to date, please!!:hug: