Re: Help to decipher MRIs and other test results....

Posted By Barb on April 21, 1999 at 09:46:58
I have had relapsing/remitting symptoms of MS since shortly after my first child was born in 1971.  Vertigo, tingling/numbness, cramps in my feet and calves, mood changes/irritability, bladder incontinence, sudden falling, thumb tremor.  There were more symptoms off and on, but I lived with it because nothing was too severe, and would always remit.  Almost 2 years ago, things got much worse.  The vertigo came back, I had more spasms and fatigue, and all the previous symptoms.  I had a major exacerbation, and found a neurologist.  I am not diagnosed with anything at this time despite many tests.  
In 1994 and ENT ordered an MRI due to the vertigo.  At the time I went to her to look for Meniere's disease, not really suspecting anything else.  Ears checked out fine.  I've had 2 more MRIs since then from the neurologist.
The 1994 MRI read partially like this:  There are 4-5 punctate foci in the white matter, most of which appear to be periventricular in location...scattered foci of increased signal intensity in the white matter as described above.  These may represent foci related to demyelination, migraine, or other vascular insults.  The finding is nonspecific."
Dec. 1997 MRI:  "Several nonspecific foci of increased signal within the deep cerebral white matter, some of which may represent volume averaging through cortical gray matter."
Feb. 1999 MRI:  "Scattered, punctate high signal abnormalities are identified involving the periventricular white matter and deep white matter tracts bilateral cerebral hemispheres.  These are not classic for multiple sclerosis, however, a demyelinating process cannot be excluded.
There is an ovoid focus of increased T2 signal involving the left external capsule/subinsular region that is noted on the comparison study without interval change.  Also redemonstrated is asymmetry of Meckel's cave left greater than right probably an anatomic variant as it appears filled with CSF.  A focus of T2 prolongation is identified near the left spenoid sinus perhaps a small polyp or a mucoid retention cyst.
Magnetization transfer ratios reveal normal or low normal values involving the pons, left brachium pontis, posterior left periventricular white matter, mid left periventricular white matter, mid right periventricular white matter, anterior left periventricular white matter, anterior right periventricular white matter, and the genu of the corpus callosum. A low MTR is identified right brachium pontis, however, this is compromised by phase artifact.
The MT ratio of a selected lesion involving the left frontal white matter exhibits abnormal ratio, .35.
Impression:  1.  Multiple normal and low-normal areas normal appearing white matter sampled with MT, as described above.  These are not clearly indicative of an occult demyelinating process.
2.  Multi-focal white matter lesions that are nonspecific, but are not in a classic distribution of MS.
On clinical exam I had nystagmus, right pupil not as reactive as left, hyperreflexes, somewhat slow coordination, decreased sensation in feet. Most of my symptoms are on my left side, at least originally.  Currently, I have constant pain on climbing stairs in my left foot.  I have imbalance, overwhelming fatigue, cognitive difficulties but not always severe, tingling, numbness, burning, tightness around my head as if I'm wearing a hat or tight headband, some vision trouble.  
Spinal tap of Feb '98 showed raised protein, somewhat raised albumin, high (18 normal is 0-10) lymphs, but no oligoclonal bands.
Because of vocal cord problems (and I'm a professional speaker)otolaryngologist performed endoscopy and found incomplete glottic clossure during phonation due to a posterior gap....and I have on and off swallowing difficulties.
All EMGs were normal.  Evoked sensory potentials were "not that abnormal".
Autonomic testing showed decreased sweating and orthostatic hypotension.
This is long but I felt important to give as complete a history as possible.  Since I have not been diagnosed, am experiencing ongoing symptoms, and only am able to speak to a nurse,not the doctor, and am told only that MRI will be repeated in a year....I am hoping you can shed some light on what may be happening.  Is it time for a second opinion outside of the clinic I've been going to?  Should I be looking further into the autonomic findings?  I'm not getting answers, guidance, and certainly no treatment where I am now.  I'm 48 and have been dealing with this since age 21, and moreso in the last 2 years.  I have given up my daily biking because of dizziness, and am afraid of losing my job due to the fatigue and all the rest.
Thank you so much for this wonderful service you provide!

[Barb__0__0]

Posted By Barb on April 21, 1999 at 09:58:58
Of course I forgot one of the most painful symptoms.....lower back is in constant pain, and at times I have painful spasms as well.  I also have trigeminal neuralgia, and on and off left ear loss of hearing.  

[Just-an-opinion]

Posted By Just an opinion on April 21, 1999 at 12:42:33
You should take your MRI's and go elsewhere!

[Conie__0]

Posted By Connie on April 21, 1999 at 15:55:15
I totally agree it is time to find a new neurologist.  I have gone through several specialists and  have mri with 6 lesions though not in same pattern of ms but I have every symptom.  My results said migraine, vasculitis or to keep in mind ms. But when dr called with results they read that have had lots of tiny strokes. Just had new mri and it matches the same as first one two yrs ago. I found new neurologist that is doing lots of blood work, tests but still thinks ms because of the weakness.

[CCF MD mdf]

Posted By CCF MD mdf on April 21, 1999 at 22:13:48
It is not uncommon for MRIs of the brain to have such regions of hyperintensity on T2 images - they are commonly called UBOs for unidentified bright objects. The classic report says "can't distinguish between microvascular ischemia, demyelination, changes associated with migraine syndrome, or normal... clinical correlation is advised."
That is just what is necessary by your neurologist - clinical correlation. You do indeed have many symptoms, and in fact it is possible that MS could produce them. But a thoughtful and careful neurologist jumps to no conclusions. The proper way to approach it is to take each symptom and decide where in the nervous system it could be coming from. If all symptoms add up to more than one focus in the central nervous system, and if the pattern is such that they could have been produced by damage to white matter (connection fibers), then it is appropriate to start thinking of MS. Of course, it is a difficult disease to diagnose and tests may not reveal it.
Many people talk about "the symptoms of MS." Symptoms of MS can be virtually anything, and it is the pattern and how they overlap and develop in time that is the biggest clue, rather than any particular symptom. Of course, some symptom complexes are highly suggestive, such as optic neuritis or transverse myelitis or an internuclear ophthalmoplegia. Most symptoms are not specific and often indeed have other explanations (such as fatigue, dizziness, pain).
I hope this gives you insight into how your neurologist's thought processes are going, and why sometimes you don't get a really clear answer if the data don't just nail it down.
Any time you have a concern about how your medical treatment is going, it is appropriate to ask for a second opinion. If you desire, you may request an appointment at our Mellen Center (MS specialists) by calling 216 444-5559 or use the 800 number 800-223-2273 ext 4-5559. Or, if you are close to a different major city, find an academic medical center with an excellent neurology department and you should be able to find an MS specialist.
I hope this helps. CCF MD mdf.

[anonymous-user__0]

Posted By Every Dr Dx's MS Using Different Standards! It's Not Right! on April 22, 1999 at 11:37:29
Sir/Madam:
In your answer to Barb, you stated:
"That is just what is necessary by your neurologist - clinical correlation. You do indeed have many symptoms, and in fact it is
possible that MS could produce them. But a thoughtful and careful neurologist jumps to no conclusions. The proper way to
approach it is to take each symptom and decide where in the nervous system it could be coming from. If all symptoms add up
to more than one focus in the central nervous system, and if the pattern is such that they could have been produced by damage
to white matter (connection fibers), then it is appropriate to start thinking of MS. Of course, it is a difficult disease to diagnose
and tests may not reveal it."
Research out of Mellen Center (Dr Rudick) from last yr, I believe, stated that the earlier a person is put on one of the new MS treatments (Avonex, Betaseron, Copaxone), the better their chances of reducing the incidence of plaques in the brain over time (if I indeed remember this correctly).
Yet, the FACT is that, different doctors diagnose MS using completely different standards! I know people who have had terrible symptoms for many years, who do not have any positive test results (MRI, CSF), who's doctors have put them on one of these treatments in light of their clincal exams alone. I know others who have test results that are very indicative of MS, as well as the history of problems & a clinical exam that shows damage, yet who couldn't get a diagnosis of anything if their lives depended on it (which, as we all know, is a definite possibility for some people with MS). WHY IS THIS?
I, myself, was diagnosed w/ MS about 5 yrs ago, & was put on Betaseron. The diagnosis was based on my clinical exam & history of symptoms (this has been going on for me for almost 8 yrs now). That doctor retired, so I switched to a new one. After undergoing many tests, which included a suspicious MRI & definite problems noted during the clinical exam, but a negative CSF, as well as a host of other tests to rule out any other causes (none found), my new doctor first refilled my prescription for Betaseron, then took me off of it 2 months later, saying that, since I do not have a positive CSF, I don't have MS. So, I stopped the Betaseron. Three wks later, I had a violent relapse - severe balance problems, inability to focus my left eye, spasticity in my right leg & the bottoms of my feet, numbness in my face, slurring of speech, an ability to mentally focus on anything, & an inability to "locate" my arms unless I was looking at them. My doctor saw this relapse, but insisted that this is NOT MS, & that I can't go back on the Betaseron, because I'm "one test result short of having MS". It has been several wks since this relapse started, & while I am better, I am still not fully recovered.
My questions are:
1- Why does every doctor have different criterea for diagnosing MS? According to the NMSS's guidelines, I have MS - more than 2 episodes of differing symptoms spaced more than a month apart, evidence during the clinical exam of some damage, a positive MRI, & no other cause found that could be causing this to happen. Why do some doctors go on LESS than that, & why do some doctors demand MORE? Isn't early treatment advised? Those of us who's doctors demand more, it seems, are being cheated out of a chance to prevent our conditions from eventually becoming worse.
2-In being taken off my Betaseron, have I now lost all the advantages I gained for being on it for 5 yrs? Am I losing time because of this? If I am eventually allowed to go back on the Betaseron at some time, will I be starting from scratch?
It seems to me that, the very fact that while I was on Betaseron, my attacks became less frequent & less severe; combined with the fact that, when I went off of it, I had a major attack within several wks (I haven't had one this severe since before I went on it), would be evidence enough that I have MS....the Betaseron wouldn't work in someone who had something else going on.
All in all, I feel cheated by the medical profession over this.
Any light you could throw on this would be greatly appreciated...although I suspect it won't do any good for me, as my doctor's opinion seems to be set. Perhaps it'll help some other poor soul out there.
Sincerely,
Hopeless in Ohio

[mk__0]

Posted By mk on April 22, 1999 at 13:06:32
I found this on the web in a medical text, maybe this will help you:
Despite increasing reliance on sophisticated brain imaging, CSF, and lectrophysiologic tests, the diagnosis of MS is based on clinical features supplemented by laboratory tests, rather than the other way around. The Schumacher criteria have been widely used for diagnosis of MS. Clinically definite MS exists when an appropriate clinical history is supported by (1) objective abnormalities of CNS function in the neurologic examination;                          (2) examination or history indicating involvement of two or more areas of the CNS; (3) CNS disease predominantly reflecting white matter involvement; (4) involvement of the CNS following either a pattern of two or more episodes, each lasting >24 hours and a month or more apart, or a slow or stepwise progression of signs and symptoms over at least 6 months; (5) patient age between 10 and 50; and (6) signs and symptoms that cannot be better explained by another disease process. These criteria are based entirely on clinical features. Laboratory testing plays an increasingly important role in documenting multicentric CNS lesions and eliminating alternative diagnoses. This is reflected in diagnostic criteria developed more recently that incorporate sensory evoked potentials
and MRI to identify disseminated lesions, and CSF IgG abnormalities to support the diagnosis.

[CCF MD mdf]

Posted By CCF MD mdf on April 22, 1999 at 21:13:08
I'm afraid I can't give you a very good answer. MS is a very complicated disease, and the diagnosis rests on clinical judgment by human beings. When the clinical evidence AND the tests match, most neurologists get the diagnosis. When they DON'T match, each neurologist does the best that he/she can in the circumstance.
You probably know from experience with the medical profession that individual doctors are quite different in their attitudes, approaches, knowledge base (both to start with right out of training and also in how well they've kept up with continuing education). Different doctors, sorry to say, are different in how thorough and meticulous they are, which means that some jump to conclusions before the data are in, one way or the other, which may or may not happen to correspond to the actual disease state.
And one of the most important factors of all, when accounting for differences in doctors, is how well they communicate. It is much harder to explain to someone why you are NOT diagnosing something than why you ARE diagnosing something. This takes time and communication skill, as well as a bit of ability to listen on the part of the patient (but I find that most patients are quite interested in listening, so that is less of a problem).
When it comes to tricky MS questions, I trust the Mellen center specialists, and I refer people to them when it is appropriate.
I hope this helps. CCF MD mdf.











Follow Ups:


Help to decipher MRIs and other test results.... Elizabeth to doctor or others! 4/23/1999
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Re: Help to decipher MRIs and other test results.... chris 4/23/1999
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