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Avatar universal

Periventricular White Matter Lesion (PWM)

I really need some clarification and guidance regarding a finding on an MRI I had in January 2013 and apologize in advance for my lengthy message.  

I am a 45 year old woman, Caucasian, with a severe history of DVT and PE.  I was diagnosed with Protein-S deficiency in 2006 and I am now on Arixtra sub-Q daily. I am also a breast cancer survivor and have tested positive for the brca 1 and 2 gene.  I was also a gymnast from the 2nd grade and into college so I definitely had my fair share of head injuries.  I saw a local neurologist and neuro-ophthalmologist in January because I woke after a nap one day with total vision loss in my right eye.  An MRI was done and I was told there were no significant findings.  I was told that I was, for lack of a better word, CRAZY and needed to see a Neurophysiologist by the local physicians.  I decided it was time for a second opinion, was referred to The Mayo Clinic in Jacksonville, and was worked into the MS specialist schedule immediately because it had already been 4 months with no vision in my right eye.  At the first visit at Mayo the MS specialist looked at my MRI CD from January and immediately stated, "Oh, you have a periventricular white matter lesion!"  Five days prior to my visit at Mayo my symptoms were at an all time high and continued for approximately 2 1/2 weeks. They included the following:

1) Serious fatigue. I can't make it through an entire day without having to nap/rest.
2)  Very dizzy, light-headed.
3) Experience horrible brain fog (can't remember how I made it into the next room, get a clear thought out into words, have severe issues with word association, and have gotten lost on my way home from my local grocery store that I've frequented for 13 years.)
4) Constantly dropping objects, especially in the kitchen, my dishes are taking most of the blows!
5) Experience numbness and/or tingling down both legs (from the knee down, including my feet and toes.)
6) I have a strange vibration sensation in both feet when I can feel them.
7) I mentioned vision loss in my right eye.
8) My hand(s) tremor uncontrollable and days later my leg(s) do the same.
9) My husband will find me staring off into space and I can't remember what I was doing before this happened or that I was doing this at all.
10)  My resting heart rate was, and remains quite high (130 bpm)
11) I can't walk straight or even lift my left/right leg and have to was drag my toes leading to many falls (I try to avoid falling at all costs since I am on a lifetime blood thinning therapy.)
12) I experience awful pressure between my ears and the top of my head (it feels like my head is going to pop off and is worse when laying down.)
13) Cannot handle ANY heat and sweat easily (mostly in the chest and trunk region.)
14) Experience a serious "aching" pain around my upper rib cage

I was told by the MS specialist that they feared this could be auto immune or vascular related.  A CT was done of my neck and spine and no lesions were found.  However, I must mention that my father and his sister both have MS.  I was told to have a follow up MRI in 3 months and not sure why another MRI wasn’t done during my week long stay in April 2013.

The strangest part is that these symptoms subsided and I started feeling a lot better and my energy level returned.  Approximately 8+ weeks later, my symptoms returned and they were VERY familiar.  First the tremor in my hand(s), a few days later, I can barely walk without assistance, must drag my toes on the ground, have to lift my leg(s) up very high at the knee, or swing the affected leg out to the side, which all cause me to fall.   These recent symptoms subsided just this week and lasted almost 3 weeks.

I am frustrated and have read that PWM are precursors to MS, have a greater risk of strokes, etc.   I am returning to Mayo in August for blood work, a MRM, and another visit with the MS specialist.  I want to head to this visit armed with more knowledge but don’t want to imply the MS specialist isn’t doing their job or don’t know what they are doing.  However, I was told that MS is typically found in the gray matter of the brain.  This is the opposite of what I have read in many clinical studies.  I must mention that I was previously a Pharmaceutical Representative for 7 years prior to my breast cancer, bi-lateral mastectomy and five reconstruction surgeries.  My oncologist was able to rule out paraneoplastic syndrome and a rare form of ovarian cancer that affects the CNS.    I am quite versed in clinical studies and have read in the AJRN “Multiple Sclerosis: The Role of Imaging” and numerous other studies that although MS lesion plaques can be found throughout the brain, they have a predilection for PWM and tend to have an ovoid configuration with the major axes perpendicular to the ventricular surface.  My questions are:

1) How do I get the MS specialist at Mayo to see my case differently and really understand the recurring symptoms I am experiencing?  I need the MS specialist to use intuition, combined with years of lengthy training, and give me straight forward answers.
2) What questions are the most important to ask during my next visit?  I live 5 hours away from the Mayo Clinic and could really use answers/treatment before I go completely crazy.  If one more person in the medical community asks if I am depressed I just may scream.  I am a very happy person and know that positivity is the key to my health and happiness.

I am experiencing these symptoms every 8-8 ½ weeks and I am just plain exhausted with the entire medical community. Any advice you can offer would be a true blessing to me and my husband.  We are both VERY worried. I also know that my grandmother had a stroke on the right side of her brain when she was 49.  I am pretty scared at this point and have little hope that I will get the answers needed before something very serious happens.

Thank you VERY much for reading this lengthy explanation and I look forward to getting your perspective.

Kindest regards,
Kelly
12 Responses
572651 tn?1531002957
Kelly, you took the time to write a very clear description of your problems.  Thanks because that was helpful.

The white matter is where the axons of  our brain do their work and also where the lesions are visible on the MRI imaging we use now. The myelin covering the axons is what is attacked by MS. It is also known that we have MS activity in the gray matter, but that is not imaged in the conventional MRI scans most of us get.

The periventricular lesion is a classic MS location but doesn't exclude other possibilities.

You are in that frustrating spot we nickname limboland - something is wrong but the medical folks won't/can't/don't name it.  It happens to more people than you might think possible.

You already know you need to prep for this next appointment.  One of the tools the doctor should use, in addition to MRIs and the Neuro exam, is your history-  the doctor should listen to your story carefully to see if it all fits together to be MS.Unfortunately so many doctors are driven exclusively by the MRI results.

Make yourself a timeline of these events - keep it brief and to the point. For example there is a great health page on how to put one together at

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

Also, I haven't said this for a few months to anyone but have said it quite often - if the doctors think it is a psychological problem, often the only way to get rid of that label is to actually go see a psychologist and get an evaluation.  Everyone we have sent off to do this has gotten a clean mental health bill from the psych exam and then can take that back to the neuro to take it off the table. Maybe your family doctor can do the referral before your August appointment so that is cleared up.


As for Mayo -their diagnostic criteria seems to be tougher than other places in this country and Dr Quix and others including myself often tell people who are contemplating going there to Hold the Mayo. Since you are already in their system, you will want to follow through but if you are not moving forward with this, you might consider looking elsewhere.

I imagine the fact that your father and your aunt both have MS makes the doctors think you are looking for that same diagnosis.  No matter what the name is, you have something wrong and please don't stop searching for the answer.  It is too easy to be discouraged by the doctors and stop the process.

Most important question to me would be - if this isn't MS what else could it be? Let the doctor know you aren't just looking to be called MS, but something is defintiely wrong.  

It's late and well past my bedtime so I hope something in all of this makes sense.  If not, please be sure to ask.  You've found a good place for your quesitons and I am sure others will jump in and help with the parts I may have skipped.

good luck, Laura



Avatar universal
We love to say "hold the mayo" because sometimes they are so backwards in their acceptance of MS............

Try another doctor rather than the mayo clinic.  I had to go thru about 4 before I found one who understood and was open minded enough to look at what I had on my MRI seriously.

Hang in there, limboland is not a fun place but we even have a forum of them!  Was there for awhile and some very nice people there as well.....you are welcome in either and welcome to our forum!
1831849 tn?1383231992
Hi Kelly - Sorry you're going through a tough time, but glad you found us.

You have gotten sage advice from Laura and Sarah. Life in Limboland is not fun. The fastest way out is for you to be "pushy". Don't let doctors brush you off as having psychological issues. That just means they can't figure it out.

As Laura said, if they tell them it's not MS ask them what it is. I've never been to a Mayo Clinic, but have often read that they can be very, very slow to DX MS. Have you looked locally? It looks like USF has an MS Center, and it wouldn't take you five hours to get there :-)

http://health.usf.edu/medicine/neurology/clinicalprograms/multiple_sclerosis.htm

Keep pushing and keep asking questions :-)

Kyle
Avatar universal
Thank you so much Laura. I wanted to accurately describe what I’ve been experiencing since January to paint a very clear picture, as well as a history and physical.

I have read up on MS for many years since it’s in my family.  I have been around this awful disease for many years and see what it can do to a person.

I have read an awful lot and have done tons of research that indeed states that a PWM is a classic MS location and you’re correct, it could be something entirely different, another auto immune or vascular issue and I am VERY open to that fact as well.

Limbo-land is the best description I have heard so far and it made me chuckle, which I DEFINIETLY needed.  I am pretty exhausted with my local medical community.  My first visit with a neuro was at USF.  A battery of test have taken place, including a botched attempt on FOUR spinal taps, the neuro could not retrieve spinal fluid at the office, MRI, MRA, MRV, and I was referred to have a VEP (Visual Evoked Response) and lumbar puncture but my the last two tests were cancelled when the neuro at USF told me there was nothing wrong, asked me if I believed in God, and scolded me for doing yoga every day.  Per the neuro, doing yoga invites evil spirits allowing them to attack a person body.  She told me to go home and research what each pose meant.  What????? The same neuro attempted a lumbar puncture four times and could not retrieve any spinal fluid and the radiologist at USF completely missed the PWM on my MRI.  This was only caught when the Mayo MS specialist viewed the MRI CD from January 2013 done at USF.  That is pretty scary and sad that I cannot trust the local neuro’s or radiologists locally.  Any future attempts at a lumbar puncture and any other tests were cancelled because after seeing the Neuro-ophthalmologist, who barely examined me, told me and the USF neuro, he didn’t believe me and had reason to question the validity of my sight loss even though my eye doctor at the Florida Eye Center examined my eye, took detailed pictures, and diagnosed me with Optic Atrophy, and my right pupil was constricting at a very slow rate compared to the left eye, visual field test stated I had no vision in the right eye.  Glad this Neuro-ophthalmologist thinks he can use my eye to see out of and was VERY condescending to both myself and my hubby.  He then told me to go home and “wait” until I could see again.  Nice!  So I left the USF group after being told I needed to visit with a Neuropsychologist.  That’s when my primary doctor referred me to his personal neuro.  At the first visit with the new neuro, he examined me, told me my case was very complex and referred me to the Mayo Clinic.  He was pretty confident that my issue was Paraneoplastic Syndrome from the previous breast cancer in 2009.  So, I returned to my oncologist who performed a PET scan of my chest, abdomen and pelvis and was told this is NOT Paraneoplastic syndrome.  The new neuro received my records from Mayo and NEVER reviewed them; however, I was rescheduled to return to him the following month.  I saw him about three weeks ago and he AGAIN referred me to Mayo for the MRI because he stated, “I do not know how to read MRI’s” and flat out refused to order one locally claiming that I was now in Mayo’s system.  I responded that he didn’t need to read it, that’s what a radiologist handles and YOU’RE my local neuro.  He again stated my case, due to its complexity, needed to be followed up by another 5 hour drive to Mayo.  Needless to say I did not reschedule my appointment with him since it seemed he was only concerned with getting paid by insurance for each visit I had with him, all while doing absolutely NOTHING for me and submitting all the claims with MS as the diagnosis ICD-9 code.  I am covered at 100% and have been since January 9 when I met my out-of-pocket and deductible for the year 2013.  So of course, I am starting to feel as if it’s all about having great insurance coverage and in a sense, being used and pushed around just for a constant payment guarantee for every visit.

Yes, I definitely want to prep correctly for my next appointment at Mayo and I assume I need to appeal to the doctor’s “soft side” break down crying like I have been for the last 6 months.  I also have a concise timeline of my episodes but NO ONE wants to review this info.  I truly appreciate the link on how to put one together and will visit the link today to make sure I am very clear and concise when I return to Mayo on August 21 for the MRM.  Needless to say that every neuro I’ve seen has filed an insurance claim for my visit and use the MS diagnosis ICD-9 code to get paid but refuse to tell me the problem or treat my symptoms.  

Here’s where it gets VERY interesting…I have been seeing a psychiatrist for over 6 years and he’s been treating me for anxiety.  I saw him last week and he stated that I am not “clinically looney” but I will definitely have him write a letter to the neuro at Mayo and bring that letter with me in August.  My psychiatrist has witnessed my symptoms and is very hopeful that I will find out what is going on very soon.

I am VERY open to the fact that this is NOT MS and pray this isn’t the case.  I certainly don’t want ANY disease but know my body and that something is terribly wrong.  Even the MS neuro at Mayo expressed deep concern, on paper, that this may be an auto immune or vascular issue.  However, nothing was done to dig deeper into this concern.  Hmmmm…don’t really understand that one at all.

I did ask if this isn’t MS, then what could be causing all these symptoms because something IS definitely wrong.  Again, the imply was that it was auto immune or vascular but no further testing was done, scheduled, and I was sent home.  I just don’t get it at all.  What if these symptoms were plaguing a family member of theirs?  Would they be so flippant or would they do what they claim they are best at…RESEARCH?  I am baffled and starting to think it’s easier to blame the patient’s mental status instead of the medical community admitting they just don’t know.  

Thank you SO very much for your kind and quick response Laura.  I am heading to the link you provided to ensure I am keeping an impeccable time line for my symptoms.  I hope you slept well and thank you very much again for your kind and encouraging words.

Kindest regards,
Kelly
Avatar universal
Sarah,

I am so thankful that you responded to my post.  I am a graduate of the University of Arkansas and returned back to USF (go Bulls!) for a degree in photography during my breast reconstruction surgeries.  I LOVE the San Antonio area and spend a great deal of time at Saint Leo University and Lake Jovita.  Our diocese used to attend a yearly picnic there every year.   It's a truly beautiful city.  I am a photographer so I take a lot of photos in this area, family portraits, engagement sessions, and animal portraits.  

Needless to say that this debilitating issue is making my photography more difficult to pursue do to the heat, hand(s) tremors, and loss of balance/gait from my inability to walk at times.    I swear at times I think maybe I am just going crazy but my husband, doctors, friends and family have watched me slowly decline and have seen these symptoms in action.  They all tell me to keep pursuing the issue and I will get my answers.  I am just so darn exhausted and have lost 54 lbs since this all began.  

I desperately need answers and like you, don't want to wait 30 years, or until my brain is Swiss cheese.  I just need a diagnosis/treatment so I can try to gain my life back.  I don't understand the flippant attitude physicians have, or since they don't have the answers, blame the patient and tell them they need to seek Neuropsychology for treatment.  I even asked my last neurologist, "Wait, are you calling me crazy?"  I did gain sight back in my right eye about 3 weeks ago, I think it was the Prednisone I was taking for the severe hives I've been living with since 2008, but my vision isn't right, is very blurry, and I am getting migraines.  I am going to the Mayo Clinic on August 21 armed with information and clinical studies but do not have then energy for a "battle of the minds!"  I would GLADLY travel to Alabama is it meant I would get the answers I need and get my life back.  PLEASE send me the name of the doctor that was immediately able to help you.  He may be my last hope before I just give up and deal with these awful symptoms for the rest of my life.  I am VERY tired of all the poking and prodding I've been through trying to get this all figured out.  

Kindest regards,
Kelly
Avatar universal
Sarah,

I am so thankful that you responded to my post.  I am a graduate of the University of Arkansas and returned back to USF (go Bulls!) for a degree in photography during my breast reconstruction surgeries.  I LOVE the San Antonio area and spend a great deal of time at Saint Leo University and Lake Jovita.  Our diocese used to attend a yearly picnic there every year.   It's a truly beautiful city.  I am a photographer so I take a lot of photos in this area, family portraits, engagement sessions, and animal portraits.  

Needless to say that this debilitating issue is making my photography more difficult to pursue do to the heat, hand(s) tremors, and loss of balance/gait from my inability to walk at times.    I swear at times I think maybe I am just going crazy but my husband, doctors, friends and family have watched me slowly decline and have seen these symptoms in action.  They all tell me to keep pursuing the issue and I will get my answers.  I am just so darn exhausted and have lost 54 lbs since this all began.  

I desperately need answers and like you, don't want to wait 30 years, or until my brain is Swiss cheese.  I just need a diagnosis/treatment so I can try to gain my life back.  I don't understand the flippant attitude physicians have, or since they don't have the answers, blame the patient and tell them they need to seek Neuropsychology for treatment.  I even asked my last neurologist, "Wait, are you calling me crazy?"  I did gain sight back in my right eye about 3 weeks ago, I think it was the Prednisone I was taking for the severe hives I've been living with since 2008, but my vision isn't right, is very blurry, and I am getting migraines.  I am going to the Mayo Clinic on August 21 armed with information and clinical studies but do not have then energy for a "battle of the minds!"  I would GLADLY travel to Alabama is it meant I would get the answers I need and get my life back.  PLEASE send me the name of the doctor that was immediately able to help you.  He may be my last hope before I just give up and deal with these awful symptoms for the rest of my life.  I am VERY tired of all the poking and prodding I've been through trying to get this all figured out.  

Kindest regards,
Kelly
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