Lesions specific to MS

Are there any places online that describe lesions specific to MS?  My MRI says 3mm focus of chronic white matter ischemic change within the right periatrial white matter tracts.  I have looked it up and can't find anything other than ischemic change means a lesion.  My MRI is so vague that I really can't figure anything out or find anything online either.

[Quixotic1]

Hi and welcome to the Forum!  I haven't seen you around.  Here is a little guide:

focus = spot of

lesion = spot that looks different than the normal tissue around it - a lesion is not specific for whatever caused it.

ischemic - starved of blood/oxygen

I wonder how the radiologist knows that this is a lesion caused by "ischemia".  It is usually difficult to tell the cause of such a small lesion.  It could be your age, but you are not particularly elderly (read that "over 50 in neurology terms).  Do you have high blood pressure, migraines or diabetes?  Have you had a known stoke?

What problems caused them to order an MRI for you, if you don't mind us asking?

Are they or you worried about MS?

Quix

[janereed]

They are concerned that it is MS.  I have not had a stroke, nor do I have migraines or high blood pressure and I am 38.  The doctor that read the MRI was a complete joke so I do not know how he knows they were ischemic or not. these are my symptoms: severe fatigue, memory loss, muscle pain, burning sensations in my legs, tremors ( sometimes severe), bladder issues, tightening of my muscles around my chest, forget words I am trying to say, stuttering (when I am not a stutterer), dizziness and vertigo, saying the wrong words. and the list goes on.
I think it is MS, as my cousin has MS and we have similar symptoms.

[janereed]

OH and nice to meet you!  I am new to the forum and am really impressed.  There is a lot of good information and great people.

[Quixotic1]

I forgot to answer your main question - though I am not a fan of one trying to read one's own MRIs

Here is a fabulous site with MRI examples that run through the most common MS lesions and how they look.  I spend quite a bit of time on this site.  It is from the Netherlands and this section of MS was co-authored by Barkhof, who is one of the most famed MS MRI experts in the world.

http://www.radiologyassistant.nl/en/4556dea65db62

Yes, your list of symptoms is suggestive, but the diagnosis comes more from the pattern of how the symptoms showed up, lasted and improved (if any)  Why don't you tell us your story.  When did the symptoms begin, have you had improvement and have you had repeated attacks?

There are many neurological diseases that share the same symptoms with MS, so there is a whole process of putting stuff together and ruling out other things before one can arrive at a diagnosis.

One thing your doc might do is ask an unrelated neuroradiologist for another reading of your MRI - called a radiology second opinion.

Quix

[dragon_flies]

Funny, what they wrote about your MRI is nearly the same as what mine said a few years ago. Small foci, white matter, query ischemia or demyelination. What I found out from my neurologist a couple of weeks later is that small lesions from MS look identical to those from ischemia. Ischemia is pretty easy to rule out if you have no history of high blood pressure or circulation problems, though; unfortunately MS seems to be harder to pin down! But it IS weird that the radiologist would claim to know without doing a neurological examination.

I wouldn't recommend trying to diagnose your own MRI online, though - way too many things can go wrong.

Hope you get it all sorted out!

[janereed]

I would be happy to tell you my story!  In 2000 I had my first attack of major fatigue and brain fogginess.  The doctor diagnosed Fibromyalgia and started treating me.  The medicaitons didn't help much with the symptoms and I ended up with another similar flareup in 2001 so I just quit the meds. In 2002 I had a bigger flareup and that is when I started having tremors, confusion and muscle weakness.  I didn't have insurance at the time so I just suffered through it. Then in 2004 I had another flareup that was worse, same symptoms as before but my gait was off and I was having difficulty talking. I failed the Romberg test as well. At that point I had insurance and the doc was concerned that is was MS.  He sent me to a Rheumatologist to rule out any connective tissue disease first, which they did rule out.  THen before he could send me to a neurologist the military moved us. In 2005 and 2007 I had flareups and the new docs blew me off, sent me to a Rheumatologist again, which was negative again.  Then in 2009 I had the worst flareup ever, severe fatigue, balance was way off as I kept falling, the tremors were horrible and my new Doc took me seriously as he was the first doc since 2004 that actually saw the flareup.  He sent me to the first neuro, who wouldn't even listen to me but ordered the mri for lower extremity weakness and gait disorder, which I guess is why they didn't do MS protocol.  He is the one that told me I have age spots on the brain.  My doc did not agree and sen t me to another neuro, who told me they were migraine spots, but I do not have migraines.  He refused to listen to me and flat out told me that I dont even have MS symptoms.  My doc still thinks it is ms and that is why he is sending me to an MS specialist here on the 1st of Feb and then Mayo clinic on Feb 23. That is the short version, but I do know the flareups are getting worse and I am not bouncing back like I used too.  The ringing in my ears has not quit since this last episode and the weakness in my legs is still there.  So what do you think?

[janereed]

LOL, I have found that trying to diagnose myself is a losing battle. I think it is just helpful for me to hear from others that have been through this and hear all of your opinions so that I do not feel completely insane!!! I truly appreciate all of you responding as it does help to ease my mind.

[janereed]

Thank you for the website, unfortunately my MRI images are no where close to being that clear.  They did an awful job with mine.  I don't know how they even saw what they saw on mine. At least I found some great information and learned a few things!!!    

[starryeyes1]

Wow! Reading your story is like reading my own. I am 37 and a military wife and live in Tucson. My first symptom was blurry vision in my left eye even tho I had just had my eyes tested. Next came major imbalance. I just suddenly couldn't walk straight. I had many MRI's done but the radiologist missed noticing that they had changed between MRI's. I went to one neuro who told me I just needed a deep tissue massage (lol) and sent me to a sleep study place. I don't hold my breath when I sleep..I had the VEP tests done and they came out normal. At this time my symptoms were balance problems, tingly legs, numb legs, numb tongue.  I switched to a different neuro who came highly reccommended and he is the one who laughingly told me that none of my symptoms were MS symptoms. My dad has had MS for 30 yrs so I knew a bit about it. I switched my insurance from Prime to Standard so I could choose my own Dr. I ended up going out of state to WA to see a specialist in MS up there. Within 10 min he had diagnosed me and found 3 more lesions on my MRI that were missed by the military radiologist and the neuro Dr here. I go to PT to help with balance since I can't walk a straight line. My neuro says I have "mild" MS but it is anything but mild to me. I cannot work anymore due to possible falling, I have applied for SS. My main problem is the imbalance. I am told it is because of where the lesion is.I too can't think of words, memory loss. I feel alone sometimes because I have friends with MS and they seem normal. Even my dad didn't get really bad until about 5 yrs ago. Anyway, I had to write because your story sounds so similar to mine. I wish you the best and I really hope you get a diagnosis soon. At least you would know what your battling. Take care!

[janereed]

WOW, thank you so much for commenting.  It is nice to talk to another military spouse who understands the frustration of Tricare Prime!!!  I told my doctor that if he didn't give the authorization for Mayo Clinic I was just going to switch to Standard and go on my own.  Luckily I got a really good PCM.  That has not always been the case.  I have found that dealing with military docs can be a real pain sometimes.  I am so thankful for the insurance, but sometimes the quality we get isn't all that great.  I am so sorry you had to go through the same thing I am and am glad that you finally found a diagnosis. The radiologist that read my mri was military and believe me when I say I am not surprised at the fact that they read it the way they did.  Being military I had to use the Naval Stations MRI machine and the naval docs had to read it.  I see the MS specialist here in town on the 1st and will let you know what comes of that!!

[Lulu54]

Hi Janereed,
That military care system is so frustrating - Sometimes I think the word *care* should come out of the tricare name.  I'm not military but am close friends with a family that has been run all over the place thanks to tricare.  I am so glad I am allowed to pick up the phone and call my own doctor anytime I want.

We have a saying around here that is never offered in jest because we really mean it .....HOLD THE MAYO.  If you want the whole story start a new post asking if anyone could share their experiences at Mayo and trying to get a dx.  The rules they use to dx MS are totally different than any other place.  And I should also mention there is no one here that I am aware of who actually got their dx of MS from Mayo.  

So my point is please don't get excited that you are going to Mayo.  That said, I hope you will be the first around here to have a  positive outcome at Mayo.

Welcome to the forum - I hope to see you around.

be well,
Lulu

[janereed]

Oh geez, that is very disheartening about Mayo Clinic. I am so frustrated at this point with not having a diagnosis after all these years and they were, seriously, my last hope.  I really hope my experience will be different.  What stinks more than anything is that after all these tests that I have had, my doc definitley thinks its MS and I have to agree with him because of the family history and so on, but he cannot treat me until a neuro says it is MS.  SO far the neuros have basically done nothing, and I had one tell me that sometimes you just don't get an answer.  So depressing. Well.... heres hoping that my experience is different. UGH..  I am hoping to hear back from Quix now that she has read my story and get her "opinion" on what she thinks....She seems very informed and I would love to hear what she thinks..if only to make me feel a bit better.
If not a place like Mayo...where do you go to see the good doctors?

[Lulu54]

I wish that Quix could hang a shingle out as a neurologist and work on diagnosises for everyone here.  Alas, she retired from medicine, thanks to her MS, but is still a great doctor.

We have a number of people who have been waiting years to get answers-  I hope you aren't one of those and hyou get some satisfaction soon.
.
Lulu

[Quixotic1]

I think you are planning on going to the Mayo in Florida, right?  Most of our horrible stories came out of Rochester and a couple from Phoenix.

I wish we had a better system than "hunt and peck" but that seems to be it.  But, didn't you get a positive review of the doc you are planning to see at the Mayo there?  Or am I getting things mixed up again.

I read your story, but was confused when you kept using the term flare-up and not talking about what symptoms the flare-up involved.  I'll read it again, but would you make sure that you have listed what each flare up meant in terms of symptoms AND in terms of abnormal exam findings?  I'll keep watching.  Also, it helps if we know which symptoms improved or not between flare ups.  I recommend that people like you put their stories into a timeline that shows the attacks (with their symptoms) and the remissions (if there are any) and puts in the docs' assessments and lab test results.  I describe it here:

http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36

Sounds like you have seen some dunces.  And I'm not sure we have heard bad things about the Forida Mayo Clinic - it's just that we mistrust the stuff that the Mayo seems to espouse in general.  I just heard another horror story about Mayo, Rochester from a veteran member.  They make me soooo mad.  I would love to hear from someone that the one in Florida is different.

Quix

[janereed]

Ok, here is my timeline:
Prior to these episodes I was an extremely active person.  I was very good at my job as an accountant. I participated in sports and went the gym religiously.  When the first episode happened I felt like I was hit by a truck. I was floored and in bed for 2 weeks. Once I started feeling better I was back to normal. Over the years I have bounced back very well but in 2004 the episodes became so bad that I was unable to work. I could not concentrate at work; I was messing up numbers, which never happened before. I could not focus and was so tired that I had to keep calling in sick, so I finally quit staying home.  This was also the first year that I began to have tremors.  In 2006 I felt better so I went back to work and worked until 2007 when I had another episode. I have not worked since. My episodes get worse when they do happen and now I am not bouncing back like I used to. I am getting depressed because there is no diagnosis and my anxiety gets really bad when the episodes start because I know I am going to feel horrible and up to this point, no one has helped, nor have they treated symptoms. I am suffering and no one is helping. This is my timeline:
2000: This episode happened during the summer and was a Mild episode that included loss of concentration, brain fog, muscle weakness and pain and severe fatigue.  Saw my family doctor who diagnosed Fibromyalgia and began treating me with Fibroplex, Celexa, Vioxx and Zanaflex
2002: In march of this year I began having the same symptoms as before, they came on quickly. I went back into my doctor and he continued the medications listed previously. This episode lasted about 2 weeks and I bounced back fairly quickly.
2003:  October--- same symptoms listed previously, also came on quickly. Saw my doctor again and voiced my concerns that this may be MS as we had a family member (1st cousin) that has MS. He was concerned as well. I could not get an MRI at this point as I had no insurance.  Stopped taking meds previously listed as they were not helping.
2004:
February- recently married, now had insurance, this episode worse than before : severe fatigue, tremors( first time), dizziness, difficulty concentrating, difficulty swallowing, gait disturbance, zoning out, difficulty talking(forgetting words) and bowel problems. New doctor concerned might be MS, wanted to rule out Lupus first. Put in referral to Rheumatologist.

April-  Having another episode, symptoms same as listed above, just as severe. Doctor sent me to Rheumatologist. Rheumatologist diagnosed polyarthralgia, fatigue and Raynauds. ANA was positive 1:640 with a speckled pattern, all other blood work negative.

October- having another episode, doctor noted bilateral shaking in legs, loss of balance, tremors throughout body and failed Romberg test: Also having severe fatigue and loss of concentration and difficulty swallowing. Put in a referral to Neurology.

November – saw Neurologist. Would not listen to my symptoms and said they thought it was Poss Intermittent Claudication with Diminished Circulation  Ultrasounds = Normal , no evidence of plaque formation nor stenosis  Did not seem concerned about other symptoms as they had cleared up
2005: Moved to CA and now seeing new doctors. December - Severe Fatigue, muscle pain, tremors throught entire body, difficulty concentrating, swallowing difficulty, gait disturbance, and memory loss (forgetting everything) new doctors wanted to rule out Lupus again. Put in request for bloodwork.  ANA 1:80 all others normal. Doctors did no follow up.

2007: August – same type of symptoms listed prior, went in to see new doctors (happens a lot with military docs) They ordered Ordered Neck CT: Impression: Normal Soft Tissue Neck Symptoms went away..no follow up

2009:
August – same symptoms as listed prior, more severe this time, episode came on really fast. Went in to see doctor, this one also new as we had moved, This episode lasted almost a month, the longest episode I have had. Doctor did not want to put in a neuro referral because he thought it was bursitis.

October- Another episode just as bad as previous one, was able to get a new doctor. Doctor saw how bad the tremors were and put in a referral for Neurology and Rheumatology. This episode has new symptoms: tingling in legs, burning in legs, and squeezing sensation in legs and chest, also total numbness in right leg that would last several hours. Issues talking included not remembering words and stuttering and loss of balance caused me to fall several time. Doctor ordered forearm crutches.

November: Had MRI  Impression:  3mm focus of chronic white matter ischemic change within the right periatrial white matter tracts  Neurologist stated these are normal aging spots. My doctor did not agree and sent me to another Neurologist

December: saw new neurologist he said spots are from Migraines, but I do not suffer from migraines, told him that, he told me he does not have any answers and that my symptoms do not match MS symptoms. I told him there is a cousin with MS and there may be other MS in family, he still told me that my symptoms are not MS symptoms, I asked about the tremor, he said it is essential tremor, I told him I only have tremors during flare, he still called it essential tremor, I decided to leave.
Saw Rheumatologist: he ran blood work ANA 1:80 all other tests negative. Ruled out Connective Tissue Disease.

2010: saw my doctor told him what Neurologist/Rheumatologist said.  He put in referral for MS specialist and Mayo Clinic.  My episodes are closer together now and I am not 100% after them now…still feeling fatigue and leg weakness.

I am hoping FL will be good for me.  I truly appreciate you taking the time to look this over and give me your opinion.

[janereed]

I'm sorry, I forgot to put in there that with this last episode I have lost more bladder and bowel function and ringing in my ears started and has not stopped since.

[MsmsinFl]

hi Quix--

I had a great experience with the MS neuro (Dr. Elizabeth Shuster) and Florida Mayo.  She was thorough, patient, actually listened, not dismissive.

However, I went to her for a 2nd opinion -- had been diagnosed with MS in the ER by a hospital neuro I didn't trust.  Mayo confirmed the diagnosis, based on blood work, MRA & MRIs of brain & spine I had received in the ER.

I agree that it's likely Mayo experiences vary based on the specific doctor & location. I chose Florida Mayo based on the insistence of a good family friend, a retired cardiologist, who has been treated there for several things -- he says they are the best, hands down.  And my experience was the best -- far better than the ER neuro and the MS neuro I ended up with in my town.

[jensequitur]

Man.... not to hijack the thread, but I think this is a great example of how patients would be benefited by health information technology.  Just think if you were able to hand your ID card to the doctor, and he plugged it in, and saw all that health history!  Instead we spend valuable resources retesting, and meanwhile the patient remains undiagnosed.

[janereed]

I think you are 100% right!! I have the records, and I take them with me, but they won't look at them because they are about 4 inches thick, so then I tagged them so they could just flip to the times I have been in for this issue, they still won't look at them. If they were in the computer it would save time and money, I get so frustrated every time they start all over again with their testing. Now I have this timeline (thanks Quix), so maybe they will look at this since it is condensed.

[janereed]

Hi Quix...

Yould told me to remind you about my time line..so I am bumping it back up for you.  I really appreciate this as I have not had the time line when I went in before and having been here talking to everyone, I now feel more prepared when I go in on the 1st.

[janereed]

I think I may be going into another episode: Yesterday was very out of it, unable to concentrate and forgot to pick up my daughter from school as well as her hearing appt, which I had written but forgot to open my planner, had tremors throughout the day and was horribly fatigued.  Today same issues but tremors were worse, was trying to read my classwork and could not comprehend what I was reading, my husband had to help me. I have been embarrassed all day long because I am stuttering and using the wrong words in my sentences.  This is so frustrating...but if I am having another episode I see the neuro on the  1st..so this could be a good thing..finally a neuro will see my body in action..i hope.

[janereed]

I was telling my therapist about how I learned about doing a timeline from you and how you were helping me out by looking at it and kind of giving me your opinion on it and she said she thought it was so wonderful that there was someone out there who cares enough to help  people like me who are in limbo, even if it is just an opinion and not a diagnosis.  She said that it helps people like me to feel more at ease while we are waiting for a diagnosis, I just wanted to tell you this and thank you again, because of you I do feel more prepared and more at ease while I wait. Keep up your great work here!!

[Quixotic1]

Hi, I am finally here!  I have to tell you that this is a dynamite timeline.  It gives a wonderful view into your pattern of problems.  Generally, without getting too wordy, it needs to be more specific.

Here is a series of specific questions I would have you address:

2000 - How long did episode last?  Did it resolve quickly or slowly?

2004 - where are the tremors?  what brought them on?

try to avoid using clinical diagnosis words like "gait disturbance" or "fasciculations" it sounds like you "symptoms surfed on the internet and some docs get suspicious.  Besides it is better to use your own descriptive words anyway.  Sometimes the descriptions give great clues.

try things like
- difficulty walking
- lurching to the side
- stumbling
- dragging a foot

2004 - What kind of bowel problem?  Constipation, incontinence, bloating??

2004 - you saw a rheum and she diagnosed "polyarthralgia" - this means pain in many joints, but you had not mentioned pain in joints.  This is an important symptom.

2009 - instead of saying "all the symptoms listed above" you might emphasize the symptoms that were most disturbing.

bursitis?  where?

BTW - MRI - "periatrial lesions" is the same as saying perventricular.  The "atrium is a large part of the lateral ventricles.  Don't put this in the timeline.  I just wanted to mention it.

So, all in all this is a great timeline.  It sounds like I am having you change a lot of stuff, but really it is small clarifications and more specific stuff.

Finally - I am not negative at all about Mayo - Florida.  We have a good report from there, and we should not condemn a place because of its origin.  The Mayo, in general, though seems unlikely to diagnose the atypical case.

I hope this helps.  Because of your timeline, I am going to make some alterations to my Heath Page.  You helped clarify things.

Quix

[janereed]

Thank you so much!! I greatly appreciate the help!  I am going to make the changes to the timeline, maybe this time I will be taken seriously!  I just sent you a message asking about this post, I did not catch you had already posted, sorry about that!!  Should I not write anything about the MRI other than I had an MRI?

I feel better hearing from you that there are good reports from Mayo FL, I am hoping this MS specialist here will figure this out and diagnose so that I don't have to spend a week at Mayo, but if need be, I will definitely go.

So my last question about this post is this: am I over-reacting or do you think this sounds like it may be MS?  My doc and I are convinced that it is, but I would like to hear your opinion as you live with MS. I know not everyone's symptoms are the same, and I know there is no way to tell just from my posts, I was just curious what you thought.

Thank you so much!!

[jeanjean469]

Hi there, i was wondering is someone could read my MRI results and let me know what they think it could be:
Findings: There are scattered small foci of prolonged T2 relaxation in the central and subcortical white matter of both frontal lobes and to a lesser extent the parietal and occipital lobes. these are nonspecific as to the etiology in this age patient. The ventricles and subarachoid spaces appear normal. there is no evidence of hemorrhage, mass, acute infarct or anomoly. There are no gadolinium enhancing lesions. There is scattered mucosal thickening in the paranasal sinuses. The arteries at the base of the brain and the dural sinuses appear patent.
Impression: Scattered nonspecific bilatral supratentorial white matter lesions. Differential diagnosis includes sequelae of vascular headaches adn demelination from multiple sclerosis, although the lesions are not in a pattern that is particularily suggestive of multiple sclerosis.

Anyone have any ideas what this means?