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1456824 tn?1288651214

Need your opinion on my history

Hello Friends,

I am new to this medical community but so happy I have found you. I added my history over the last 15 years of my life and would love to hear any feedback you all may have. Thanks so much and have a super week.


I am a 48 y/o female who first developed sx in 1995. My first sx was a foot drop, numbness on left side of leg, extreme fatigue (like someone sucked every bit of energy out of me), jumping vision, weakness. Took Medrol dose packs over the years which seemed to help. I had an MRI in 1985 and it had one lesion on it and LP was neg. The neurologist back then stated we know there is something going on but we cant  put a dx on it. I had a work up at the Mayo back then too and no dx,

Over the last 15 years I have struggled with sx on and off and for the last 5 years the sx have been overwhelming. I go to work but thats about all I can do. I dont do the laundry, dishes, or cook. Thank God my children are older. I never seem to recover 100% anymore. My body is extremly fatigued...not just tired...I am talking fatigued to the point of its difficult to chew food, weak, burning sensation on both forearms, heat causes these sx to increase, my eyes dance when I am very tired, poor balance with quick movements and showering with eyes closed, and worst of all my cognitive ability and speech has been affected,

I have had two more MRI's done in the last 4 years.  I have never been dx with MS but have suspected it for years.

Second  MRI 2006 showed numerous small subcortical white matter T2 hyperintenceities in the frontal lobe 16 to be exact.

Third MRI 2009 showed multiple abnormal clustered areas of signal abnormality primarily in the frontal lobe and in the periventrucular white matter surround the frontal horns, with an additional isolated focus in the right parietotemporal lobe.

I was dx with chronic fatigue syndrom 2 years ago and was on Valcyte for 15 months with no improvement.

In 2009 I saw a young Neuro guy at a very prominant hospital and was told NO MS!
I am currently waiting for an appointment with a new neurologist.

What are your thoughts about the sx and MRI results?

Thanks for your time.
FG
10 Responses
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147426 tn?1317265632
now I'm frowning and whining - I am not elderly.......I'm in advanced middle age.

And so far, this is the oldest I've ever been!

Ahhh, you are definitely describing myoclonic jerking, but it would be unusual in MS to have simultaneous onset of myoclonic jerks so widespread.  And it is good to know you have a medical background.  I try not to talk down to people.

The mildly elevated sed rate points away from MS, but could be from something else.  Those conditions that cause systemic inflammation would have to be looked at very thoroughly.

The typical Lyme test is the ELISA screening and it is notoriously unreliable with many false negatives.  You should request a Western Blot done in two different labs specializing in uncovering the specific bands associated with Lyme.

Other than that what I said still stands.  You need an invested neuro who will take you through the proper steps to get whatever diagnosis is appropriate.  

Quix
Helpful - 0
1456824 tn?1288651214
what can I can ....You ARE AWESOME!!!
I have had every test under the sun...Lymes, Syphlis, HIV, Lupus and all vitamin def.  I have had an elevated sed rate around 30. But every other test listed above is negative,
The twitches I am having are jerks. My head will actually jerk, my legs will jerk forward or back, my stomach muscles even jerk. My mouth is not symetrical both sides go down but one is a little more than the other side.
The symptoms I have had in the past 15 years are the bone cushing fatigue, weakness probally due to fatigue, mental fatigue, bone pain, never have tolerated heat, nystagmus, and these symptoms have put me down for up to 8 or 9 weeks at a time. I have had probally 20 flares. I have always gotten better with bedrest but in the last 5 years I dont ever get 100% better. 5 years ago I had a complete hysterectomy and that seems to have really made things worse, And then I had really bad flu which lasted two weeks about two years ago and I can honestly say I have never recovered from that.
Thanks again I appreciate all you do. If I lived closer I would come over and help you to repay you for the time you have spent with me. I am an Old Nurse so I have much compassion for the elderly. Take care
Frownie
Helpful - 0
147426 tn?1317265632
Hi, I usually give people nicknames and I am considering Frownie.  It is interesting that your face has change in expression.  Has this been completely symmetrical?  that is possible, but some measure of asymmetry would be more common in MS.  My neuro noted that I have a muscular asymmetry to my face, something I had never noticed.

I have read all of your posts.  Mostly they made me mad.  You have really seen some dunderheads in the neurology field.  You have the honor of being totally new and adding a new "lie" to our growing list - Lies My Neuro Told Me.  You will likely enjoy reading this though it has grown enormously long.  I had never heard the choice idiocy that people with MS can't stand on one leg.  Too bad no one told the woman with MS that climbs mountains.  Alas...

http://www.medhelp.org/posts/Multiple-Sclerosis/Lies-My-Neuro-Told-Me-or-Common-MS-Myths/show/1074879

Your symptoms are certainly MSish.  The asymmetrical onset of numbness and foot drop is classic.  The fatigue of MS can be bone-crushing.  While it is classic in MS, it is certainly not exclusive to MS.  Many disorders have similar complaints of severe fatigue.  In MS fatigue is the number one cause of people leaving the workplace.

You remark that the symptoms have come and gone, but it would be nice to hear a couple examples of episodes - like what symptoms appeared and how long they lasted coupled with how much improvement you got.  My gut is that they will conform to the relapsing remitting pattern in MS well.  

It is also interesting that your attacks responded to Medrol dose packs.  That surprises me a little, with respect to MS.  Those contain a very low dose of steroid compared to what the routinely use in MS.  The highest day of the DosePak has 24mg of methylprednisolone.  In MS they use 1000mg each day for 3 to 5 days.  However, a few people have commented that low doses offered some relief.

Sequential MRIs show an increasing lesion burden.  Can anyone spell MS???  The distribution on the 2nd MRI of subcortical lesions often throws the more mediocre doctors off, but purely subcortical lesions are totally "consistent with" MS, even if they are not classical.  The third MRI listed lesions as being also in the periventricular location.  Now we are talking a classic distribution that should have had a thinking doctor falling all over himself to rule out (or in - depending on how you view it) MS.  

So, who was the mental giant who looked at all of this and diagnosed Chronic Fatigue??  CFIDS does not cause increasing brain lesions, neuropathies, paresthesias and jerky vision.  This is just so stupic that I am embarrassed for my profession.  A moment of silence for my grief......okay, that's over.  I'm getting used to it.  I can't stay silent too long or I'd never be able to speak, we have so many instances of dufus neuros thinking idiotic things.  Sorry you were taken down that road.

The second radiological opinion you had of the MRIs was very thoughtful and well-done.  Yes, demyelinating diseases (of which MS is by far the most common) is clearly at the top of your "differential diagnosis".  The DDx is the list of possible suspects that could possibly fit a person's history, physical exam findings, and test results.

Do you think you have had a really thorough head to toe neurologic exam??  A good one takes in excess of 30 minutes and does many dozens of tests.  If there are enough abnormalities on neuro exam you have met the first two requirements for a diagnosis of MS.  I didn't note.  Do you have a neurologist who takes you seriously and is committed to finding out the answer to your problems?

But, before any firm diagnosis of MS can be done a THOROUGH rule out must be done of those diseases like autoimmune diseases, infections like Lyme Disease, syphillis, and HIV, vitamin deficiency, and a few others must be undertaken and must be negative.  This ruleout process is accomplished by noting certain things in the very thorough history and physical and by a whole slew of blood tests.

At this point, it can be possible to diagnose MS, even without seeing an MRI.  However, the MRI holds a pretty important role in most neurologists eyes.  But, not much abnormality is needed.  Even just two or three MRI abnormalities is enough to raise the likelihood of MS to greater than 90% (enough to make a diagnosis) if there is a history of at least two attacks and there are two abnormalities on the neuro exam that indicate separated lesions in the brain or spinal cord.

So, you seem to just need a good MS neurologist.  The picture looks pretty clear to me - except that I would like to hear a description of your attack pattern and of the results of the neuro exam.  Plus, of course, the ruling out of MS mimics.

BTW - I'm still laughing at the idiot that thinks that no one with MS can stand on one leg  and mad at the imbecile who thought that CFIDS was the best answer to your problems.

Now, despite my gut feeling (which is right more often than not) NOTHING can be diagnosed online.  But, in the context of MS, my suspicions for you have MS as the first, second and third possibilities - given that the rule out is negative.

For completeness you should have an MRI of the cervical and thoracic spinal cord.  I definitely agree with that.  Depending on the results of the neuro exam I'm not even sure that a spinal tap would be necessary.  Some MS neuros always do them, though in Europe they are being done less and less.

I would recommend that you read some of the Health Pages to get a feel for what MS looks like during the work up.  Ones that might be useful would include

Spinal cord lesions

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Spinal-Cord-Lesions/show/764?cid=36

http://www.medhelp.org/health_pages/Multiple-Sclerosis/History-of-the-Diagnosis-of-MS/show/158?cid=36

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36

And here is a list of some of the more popular ones in an Index

http://www.medhelp.org/health_pages/Multiple-Sclerosis/MS-Information-and-Resources-Index/show/22?cid=36

I hope some of this helps clarify what needs to be done to find your diagnosis - whatever it may be.

Quix
Helpful - 0
1456824 tn?1288651214
AMEN!! I totally agree, sometimes I wonder where these doctors get their degree's from.
I appreciate the feedback. ;)
Helpful - 0
338416 tn?1420045702
> The symptoms she describes are not what we typically see with MS as far as the vision changes go

What does the neurologist mean by this?  Is he talking about the jumpy eyes?  I have that, and it's called nystagmus!  Definitely an MS symptom.
Helpful - 0
1456824 tn?1288651214
I had a friend of a friend take a look at my reports,,,he is a Neuro Rad...see below at his comments. Again Thank You!!


This is certainly a difficult and perplexing case. The symptoms she describes are not what we typically see with MS as far as the vision changes go, although you cannot rule MS out on the symptoms alone. In addition, all of the cognitive symptoms she experiences would lead me to think that of significant gray matter involvement that is not evident on the MRI. Although conventional MRI is not sensitive for looking at gray matter lesions, there is no significant age-related atrophy described in the reports.

As to the MRI reports, this is a classic nonspecific, differential diagnosis type of case. Based on the findings, there is no clear cut diagnosis that can be reported. To put it a different way, the findings do not simply leap out at you and say "this is the diagnosis". They do not fit a particular pattern; therefore, the radiologist listed a differential diagnosis that is somewhat vague and far-reaching. However, it is an appropriate one given the findings described in the pattern described.

My personal opinion, again without seeing the films, is that a demyelinating disease would be at the top of my differential diagnosis. This is not a typical pattern of T2 lesion spread for MS, but MS cannot be rules excluded based on this MRI and other demyelinating diseases could still be in play. At her age, small vessel, age-related ischemic changes would be highly unlikely. The lack of diffusion restriction would also favor this not being an ischemic phenomenon; however, it does not exclude it. The lack of enhancement, if this is a demyelinating condition, would suggest that the inflammation and blood brain barrier breakdown is not acute. Other encephalitic processes, although cannot be excluded, are much less likely. Over this time course, they would be expected to be more confluent and involve both gray matter and white matter. The other possibility to exclude (and I would have included in the differential diagnosis) is a diffuse vasculitis. Vasculitides can cause atypical patterns of T2 lesions and can exist over long periods of time. They can involve multiple large and small cerebral vessels, creating a bilateral asymmetric pattern similar to this one. The diagnosis of a CNS vasculitis, however, is very difficult to make and is entered only after excluding all other causes.

I hope this helps. It is the best that I can do without examining the patient myself and looking at the films myself. At least it might offer a little insight and perspective into the thinking process. Let me know if you have any additional questions and if you get a copy of the films. Take care and have a great week. All my best.

Helpful - 0
1386048 tn?1281012333
ha!!  ridiculous that a doctor told you you did not have ms if you could stand on one foot!!  that is appauling!!

i am so sorry for what you are going through and am glad you landed here...you will find support and guidance from this forum very useful.

i agree about pushing for c and t spine being imaged and perhaps it's time for another LP.

can you reach out to a new neurologist or even an MS specialist for a new take on your symptoms?

xo michelle
Helpful - 0
1456824 tn?1288651214
Thank you for taking the time to respond to my message,,,

I feel as if I have been used by the CFS doctors, each visit is cash so maybe this is why they labeled me with CFS, and of course the dx is made via sx only because there are no tests to prove one way or the other.

I have never had an image of my cervical or thoracic area and I am not being seen by a specialist at this time.
I am sure you have all felt in the past like one more doctor visit and one more time i will be told that they dont know what is wrong with you.

I was told by one MS doctor that because I could stand on one foot I clearly do not have MS.

I have been in bed for the last week because of sx and too weak to do anything,
My FP doctor saw I was feeling really bad two weeks ago and put me on a medrol dose pack ...sx got a lttle better for a few day,

going to rest now, will have computer on waiting to hear back from you and Quix

FG

Helpful - 0
Avatar universal
Another welcome here! Glad you found us.

Your symptoms sound truly terrible, and I'm so sorry. Does your current doctor attribute them all to chronic fatigue? I'm no doctor, but that seems ridiculous. Not that CFS cannot be very debilitating, but in your case perhaps that diagnosis was just a way to label you and move on.

Your brain MRIs certainly aren't normal. Have they ever imaged your cervical and thoracic spine? Are you even being seen by a specialist in MS? Do you have the reports from your office visits? I'm curious to know what the findings have been upon physical exam.

Quix will be back to ask more questions, so please hang in there. If you can, also take a look at our Health Pages (click at upper right). Lots of good info there.

Again welcome,
ess



Helpful - 0
147426 tn?1317265632
Hi, I wanted to welcome you to our forum.  the weekends are often very slow.  Pleae do not be discouraged at the lack of responses.  I have A WHOLE LOT to say, but need the spare minutes to say it to you.

this is a great spot.  Hang with us, and others will be along presently to say hi and talk about your very interesting history.

Quix, MD
Helpful - 0
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