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What Do My MRI Scan Reports Indicate?
Question: Hello there,
long time no see :-) I've just returned from hospital with some preliminary lumbar puncture results. Since I'm going to see my neurologist for the full set of results in two weeks and I'm quite an impatient person as you may know, I was wondering if you could give me a hand with interpreting the results. Unsurprisingly, nobody bothered to tell me anything in the hospital. In addition, I have some other interesting results you might want to have a look at.
To recap my case - 2011 November: post-infectious (tonsillitis) urological symptoms + fatigue; 2014 January: - post-infectious (bronchitis) severe fatigue, reading problems, 'dyspraxia', tremor, memory lapses, partial-seizures, concentration, speech and thinking problems. In addition, chronic back pain.
current state: no more memory lapses, no more seizures (both spontaneous recovery), fatigue is less severe but persistent; tremor better; dyspraxia, and reading difficulties persist without change; thinking is better and speech problems are better but neither normal, urological problems persist.
2x MRI: normal, slight hippocampal asymmetry on the second MRI
spinal MRI - no lesions, some bone tissue changes which are probably the causal factors behind the back pain (such as scolliosis, slightly bulging disk, osteophytes, slight narrowing of the canal) but insignificant from a neurological point of view
EEG video monitoring - slight abnormality on the right side, insignificant
Evoked potentials + EMG: normal
ECG monitoring + echocardiography: normal
blood tests: everything within norm, except:
hyperbillirubimia
low level of ACE
lower level of cortisol (165, range 171-540)
-- some tests you have recommended (including Ca, ionised Ca, ASLO, etc. have been done and come out normal), AChR, Vit. D and E, copper, ceruloplasmin, adrenaline not done yet.
Immunology:
high level of IgE (280, range: 0-100): proved atopy, elevated IgE due to grass, mould, including some trees, animals, etc... (quite a lot of things)
- auto-immunity not proved
Ophtalmology:
- everything is OK with the eyes
Ultrasonography of thyroid, of all organs in the belly: OK
Urology: cystometry and cystoscopy: hypersensitive, hyoperative (?or hypooperative?) detrusor with normal capacity, dyscoordination of the Urethral sphincter; otherwise everything normal (no infection or disease)
At last, the lumbar puncture:
0.5g /l CBm 2 elements/ul, slight dominance of lymphocytes, sporadic borderline activated lymfoforma, in monocyte row isolated foam cells, monocytic oligocytosis with lipophagic reaction... Detailed results will be available in 2 weeks.
-- please excuse my bad translation (and note that ph = f in czech), I've done the best I could. If anything doesn't make sense do let me know. For instance, I couldn't for the life of me find a translation of lymfoforma - perhaps it's a typo and the doctor meant lymforma (lymphorma), or lymphooma or whatever... I hope you'll know better.
Meanwhile, I've been well on the way with psychological treatment with my XXXXXXX It's going very well and I think I've got rid of some of the anxiety that I was feeling. I'm no longer looking up things on the internet (that's why I'm asking you to interpret my results!) and I'm focusing on good nutrition, exercise, etc... Although I'm not convinced yet, that all my problems are psychological.
So what do you think? My new neurologist has this far thought that I have chronic fatigue syndrome... we'll see what he thinks in two weeks.
All the best,
XXXX
long time no see :-) I've just returned from hospital with some preliminary lumbar puncture results. Since I'm going to see my neurologist for the full set of results in two weeks and I'm quite an impatient person as you may know, I was wondering if you could give me a hand with interpreting the results. Unsurprisingly, nobody bothered to tell me anything in the hospital. In addition, I have some other interesting results you might want to have a look at.
To recap my case - 2011 November: post-infectious (tonsillitis) urological symptoms + fatigue; 2014 January: - post-infectious (bronchitis) severe fatigue, reading problems, 'dyspraxia', tremor, memory lapses, partial-seizures, concentration, speech and thinking problems. In addition, chronic back pain.
current state: no more memory lapses, no more seizures (both spontaneous recovery), fatigue is less severe but persistent; tremor better; dyspraxia, and reading difficulties persist without change; thinking is better and speech problems are better but neither normal, urological problems persist.
2x MRI: normal, slight hippocampal asymmetry on the second MRI
spinal MRI - no lesions, some bone tissue changes which are probably the causal factors behind the back pain (such as scolliosis, slightly bulging disk, osteophytes, slight narrowing of the canal) but insignificant from a neurological point of view
EEG video monitoring - slight abnormality on the right side, insignificant
Evoked potentials + EMG: normal
ECG monitoring + echocardiography: normal
blood tests: everything within norm, except:
hyperbillirubimia
low level of ACE
lower level of cortisol (165, range 171-540)
-- some tests you have recommended (including Ca, ionised Ca, ASLO, etc. have been done and come out normal), AChR, Vit. D and E, copper, ceruloplasmin, adrenaline not done yet.
Immunology:
high level of IgE (280, range: 0-100): proved atopy, elevated IgE due to grass, mould, including some trees, animals, etc... (quite a lot of things)
- auto-immunity not proved
Ophtalmology:
- everything is OK with the eyes
Ultrasonography of thyroid, of all organs in the belly: OK
Urology: cystometry and cystoscopy: hypersensitive, hyoperative (?or hypooperative?) detrusor with normal capacity, dyscoordination of the Urethral sphincter; otherwise everything normal (no infection or disease)
At last, the lumbar puncture:
0.5g /l CBm 2 elements/ul, slight dominance of lymphocytes, sporadic borderline activated lymfoforma, in monocyte row isolated foam cells, monocytic oligocytosis with lipophagic reaction... Detailed results will be available in 2 weeks.
-- please excuse my bad translation (and note that ph = f in czech), I've done the best I could. If anything doesn't make sense do let me know. For instance, I couldn't for the life of me find a translation of lymfoforma - perhaps it's a typo and the doctor meant lymforma (lymphorma), or lymphooma or whatever... I hope you'll know better.
Meanwhile, I've been well on the way with psychological treatment with my XXXXXXX It's going very well and I think I've got rid of some of the anxiety that I was feeling. I'm no longer looking up things on the internet (that's why I'm asking you to interpret my results!) and I'm focusing on good nutrition, exercise, etc... Although I'm not convinced yet, that all my problems are psychological.
So what do you think? My new neurologist has this far thought that I have chronic fatigue syndrome... we'll see what he thinks in two weeks.
All the best,
XXXX
Brief Answer:
Happiest of New Years to you
Detailed Answer:
I was on the verge of sending you an email to see how you've been doing. I knew you would be defending yourself like a gladiator against the best of those "doctors!" LOL.....and here I open my mailbox and there's a message from you! Nice to hear from you again as well.
So I've read your summary...thank you very much and as well the LP results. I have to admit that I've never really seen an LP report quite like that one....it's almost as if they sent a peripheral smear to be done of the fluid as opposed to just a standard reading or protein, cells, and presence or not of blood. There are generally other things always asked for in a standard tap such as glucose, sometimes special items such as oligoclonal bands, immune complexes, maybe even a gram stain and sensitivity.
Foam cells are macrophages that have ingested massive amounts of LDL subtype cholesterol.....they are fatladen so to speak. I've never really seen them reported in a CSF specimen but that doesn't mean anything because as I said, you can ask for any test you want on CSF that you order on blood, urine, or any fluid in the body....it's just not the type of thing I've ever seen....but if you have a suspicion for a disease process in the CNS and you have the fluid...why not go for it? If it aint there...chances you're not going to find it in any other bodily fluid, right?
So, foam cells are generally talked about in the setting of atherosclerotic plaques and regions of the body (such as blood vessels) where this occurs. That's why it's a bit odd as to why anybody would either look for these things in CSF or a pathologist would mention them.....it's interesting and requires more investigation on my part.....I'm going to delve into areas not yet charted by myself.
Let me ask you this...anybody in your family with any type of or possibly any type of inborn errors of metabolism or genetic diseases where enzymes are faulty, missing, or something of that nature?
So let me try and do a little reading over the weekend on this topic of foam cells in the CSF suggestive of a high concentration of LDL which I'm not at all familiar with...fat circulating about your brain...hmmmm....very interesting! And see what I find....in the mean time, as you said...more specific and complete results on the CSF are destined to come out shortly....so we'll see what they show....
I'm happy and concur with your working with someone who can make you feel so well in terms of the XXXXXXX ....we'll see if the neurologist measures up to snuff! LOL....I think he does if he's asking for a CSF peripheral smear.....that's one for the toolbox I won't forget! LOL...
Be good and I'll start doing my homework.
P.S. I'm going to also look up what if any CSF findings are felt to be suggestive of or supportive of CHRONIC FATIGUE SYNDROME.
P.P.S. I know you've sworn off reading things on the internet that you shouldn't be looking at such as all the girly sites, right? HAHA! But here's a link to a really outstanding little presentation on FOAM CELLS if your XXXXXXX will allow you---
https://www.google.com/search?q=foam+cells&biw=1024&bih=649&tbm=isch&tbo=u&source=univ&sa=X&ei=Cjq6VKiIGYibyQTo_IDoCQ&ved=0CCwQsAQ
This one is going into MY LIBRARY....perfect for a rainy day and to have gone through it at least once to refresh on basic facts of some errors of metabolism that I've yet to see in practice.....THANK YOU for that opportunity to review this information...
Have a great weekend.....
Happiest of New Years to you
Detailed Answer:
I was on the verge of sending you an email to see how you've been doing. I knew you would be defending yourself like a gladiator against the best of those "doctors!" LOL.....and here I open my mailbox and there's a message from you! Nice to hear from you again as well.
So I've read your summary...thank you very much and as well the LP results. I have to admit that I've never really seen an LP report quite like that one....it's almost as if they sent a peripheral smear to be done of the fluid as opposed to just a standard reading or protein, cells, and presence or not of blood. There are generally other things always asked for in a standard tap such as glucose, sometimes special items such as oligoclonal bands, immune complexes, maybe even a gram stain and sensitivity.
Foam cells are macrophages that have ingested massive amounts of LDL subtype cholesterol.....they are fatladen so to speak. I've never really seen them reported in a CSF specimen but that doesn't mean anything because as I said, you can ask for any test you want on CSF that you order on blood, urine, or any fluid in the body....it's just not the type of thing I've ever seen....but if you have a suspicion for a disease process in the CNS and you have the fluid...why not go for it? If it aint there...chances you're not going to find it in any other bodily fluid, right?
So, foam cells are generally talked about in the setting of atherosclerotic plaques and regions of the body (such as blood vessels) where this occurs. That's why it's a bit odd as to why anybody would either look for these things in CSF or a pathologist would mention them.....it's interesting and requires more investigation on my part.....I'm going to delve into areas not yet charted by myself.
Let me ask you this...anybody in your family with any type of or possibly any type of inborn errors of metabolism or genetic diseases where enzymes are faulty, missing, or something of that nature?
So let me try and do a little reading over the weekend on this topic of foam cells in the CSF suggestive of a high concentration of LDL which I'm not at all familiar with...fat circulating about your brain...hmmmm....very interesting! And see what I find....in the mean time, as you said...more specific and complete results on the CSF are destined to come out shortly....so we'll see what they show....
I'm happy and concur with your working with someone who can make you feel so well in terms of the XXXXXXX ....we'll see if the neurologist measures up to snuff! LOL....I think he does if he's asking for a CSF peripheral smear.....that's one for the toolbox I won't forget! LOL...
Be good and I'll start doing my homework.
P.S. I'm going to also look up what if any CSF findings are felt to be suggestive of or supportive of CHRONIC FATIGUE SYNDROME.
P.P.S. I know you've sworn off reading things on the internet that you shouldn't be looking at such as all the girly sites, right? HAHA! But here's a link to a really outstanding little presentation on FOAM CELLS if your XXXXXXX will allow you---
https://www.google.com/search?q=foam+cells&biw=1024&bih=649&tbm=isch&tbo=u&source=univ&sa=X&ei=Cjq6VKiIGYibyQTo_IDoCQ&ved=0CCwQsAQ
This one is going into MY LIBRARY....perfect for a rainy day and to have gone through it at least once to refresh on basic facts of some errors of metabolism that I've yet to see in practice.....THANK YOU for that opportunity to review this information...
Have a great weekend.....
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
thanks for your answer!
I've done a little look-up anyway out of curiosity :) it's still me after all... and look what I found:
https://books.google.co.uk/books?id=TN_hTJPeEWAC&pg=PA51&lpg=PA51&dq=monocytic+oligocytosis&source=bl&ots=0Elwib2Sgt&siYYYY2UYMxZZCbKuFS7KLG3s&hl=en&sa=X&ei=-5a6VNaxCoeraZ3kgRg&ved=0CCUQ6AEwAA#v=onepage&q=monocyticYYYYfalse
"Monocytic olygocytosis occurs at the end stage of all neurological infections."
" Along with the accompanying lipophagocytic reaction it is often seen in CNS destruction".
A very interesting paragraph...
The evidence so far leads me to a preliminary layman's conclusion that some kind of infection took place either just in 2014 or in both 2011 and 2014... something like ADEM perhaps... well I don't know anything so I'm just guessing.
There's no genetic syndromes or anything of that sort in my family.... Only atopy, hyperthyroidism, my mother had a malignant intestine tumour in her 40s (caught in a very early stage fortunately), my grandfather died of multiple myeloma in his 60s, and my grandmother has had stroke twice... nothing seems relevant though.
Do you think that a geneticist should be consulted? There's one thing they advised me at the new private clinic: that I should consider submitting my case to the Mayo clinic because they kind of like dealing with people with mysterious diseases. Do you think it's worth considering?
One thing that speaks against a genetic problem is that my symptoms don't seem to be progressive. Rather, it's like an attack of sort and then a long recovery.. but that's a very limited view of genetics I think...
Any idea what is meant by lymfoforma?
All the best,
XXXX
I've done a little look-up anyway out of curiosity :) it's still me after all... and look what I found:
https://books.google.co.uk/books?id=TN_hTJPeEWAC&pg=PA51&lpg=PA51&dq=monocytic+oligocytosis&source=bl&ots=0Elwib2Sgt&siYYYY2UYMxZZCbKuFS7KLG3s&hl=en&sa=X&ei=-5a6VNaxCoeraZ3kgRg&ved=0CCUQ6AEwAA#v=onepage&q=monocyticYYYYfalse
"Monocytic olygocytosis occurs at the end stage of all neurological infections."
" Along with the accompanying lipophagocytic reaction it is often seen in CNS destruction".
A very interesting paragraph...
The evidence so far leads me to a preliminary layman's conclusion that some kind of infection took place either just in 2014 or in both 2011 and 2014... something like ADEM perhaps... well I don't know anything so I'm just guessing.
There's no genetic syndromes or anything of that sort in my family.... Only atopy, hyperthyroidism, my mother had a malignant intestine tumour in her 40s (caught in a very early stage fortunately), my grandfather died of multiple myeloma in his 60s, and my grandmother has had stroke twice... nothing seems relevant though.
Do you think that a geneticist should be consulted? There's one thing they advised me at the new private clinic: that I should consider submitting my case to the Mayo clinic because they kind of like dealing with people with mysterious diseases. Do you think it's worth considering?
One thing that speaks against a genetic problem is that my symptoms don't seem to be progressive. Rather, it's like an attack of sort and then a long recovery.. but that's a very limited view of genetics I think...
Any idea what is meant by lymfoforma?
All the best,
XXXX
Brief Answer:
I believe your neurologist is mainly looking at the possibilities OF:::::::
Detailed Answer:
Multiple Sclerosis, Chronic Fatigue Syndrome, hyperactive immune system status post viral infection (para-encepahlitic episode) are the top 3 things that your neurologist is likely thinking. Perhaps, something farther down on the list could be some sort of inborn error of metabolism having to do with lipid metabolism along the lines of an adult onset metachromiatic leukodystrophy or lipoid dystrophy of some variety.
Of course, I'm speaking (inappropriately) for your neurologist but from the articles that I've been pulling and looking at (including yours--- Good work Holmes!) that's my best guess.
The diagnosis of MS out of all this would be a real long shot given the fact, that you have no recognized white matter lesions or plaques to speak of...all published studies having to do with PRECURSOR abnormalities noted in CSF of patients having to do with FOAMY CELLS (i.e. fat or cholesterol laden macrophages) spoke of subjects who either had DEFINITE OR PROBABLE MS (and you have neither at this point) or who developed the disease very shortly after the discovery of the CSF abnormalities. Furthermore, many of the studies I've looked at were not recent and were all done from about 2001-2004. Hasn't been much work since that time in this area. The implication being that using lipid dystrophies of some variety just never really panned out as a useful marker to detect MS any better than clinical suspicion and/or MRI studies which are now recognized as the Gold standard of imaging. In fact, I believe it's swung a bit too far the other direction which is that if a lesion is seen on the MR of a demyelinating nature....it's MS until proven otherwise and if NO LESIONS are seen the patient CLEARLY DOES NOT have MS...(you're in the 2nd case for all practical purposes). Of course, the disease has to start at some point before ANY white matter lesions are seen and one of the ideas of looking for profiles of patients with lipid diseases was precisely for the purpose of categorizing patients and creating profiles that could predict the appearance of lesions.
However, it just didn't work out that way in the vast majority of the subjects studied and tested and so I believe that type of CSF assay has been essentially abandoned here in the U.S. Obviously, your neurologist continues to subscribe to that information....and again....by no means am I judging his decision to go down this path simply because it's not commonplace here....not at all.....quite the contrary...I think it's great that he/she wishes to pursue this line of questioning to its logical conclusion. If it leads to a dead end...so be it...but in some people as per studies in the early 2000's there was some success.
The other big difference between your CSF specimen in terms of the lipid abnormalities (as seen by the presence of foamy cells) and the ones in the studies diagnosed talking about MS is that there was for the most part ABUNDANT quantities of FOAM CELLS in the CSF because of the lipid abnormalities that the subject had, the autoimmune dysfunction and subsequent leakage of the blood, brain barrier. In your case, however, there doesn't seem to be an overly impressive amount of such cells....in fact, it is very possible that there are such cells present in normal CSF in subjects without any evidence of problems JUST BECAUSE.....the fact of the matter is we never look for them and so we're not used to hearing or seeing them on a CSF report. Therefore, they look odd...but there is a range of normality for those cells and I suspect yours may fall into that category....we'd need ranges though which either you didn't provide in your translation of the results or the pathologist failed to include as part of the report.
About the possibility of CFS......essentially, we have nothing in the CSF thusfar to point us in that direction and which is the likely reason why your results will take a couple of weeks to return. Your neurologist sent them off for all sorts of interleukin studies (I'm guessing)....if you're paying for all this I don't EVEN want to know what your XXXXXXX is likely to come out....I hope you've got insurance or you've convinced the government to splurge a few of their nickels on you....since you have so much to contribute to your society in the future (and I do not say that facetiously either....I think your government should be proud and feel lucky to have you in the populous.....they better give you a good workup--- especially since they likely provide the best health care for themselves, their families, and their friends out the country's limited resources....they should feel compelled to take care "the good ones" once in awhile!).
S/P infectious state with residual ongoing immune system hyperactivity.....sort of like what happens with rheumatic fever, or as put it ADEM.....except we're missing pretty much all of what SHOULD've been seen from a process like that if it were truly the culprit of such widespread dysfunction in terms of the white matter disease which tends to leave lots of footprints and fingerprint smudges behind....this one didn't.....so I think the likelihood of a post viral infection of some variety causing demyelinating or subcortical damage is almost impossible.
So there you have it....my 2 cents....which is what your neurologist may have told you anyways...I apologize for not being able to come up with anything of real value on this time around. I think you could clearly nix some of the other lab tests I recommended because in light of the new strain of thinking (which I like) none of those additional tests (heavy metal screening and a few others you mentioned hadn't been done yet) are going to help make a diagnosis of either MS or CFS.
Do I think Mayo would be interested in it? I don't doubt that not only Mayo but Johns XXXXXXX XXXXXXX General, XXXXXXX Clinic, and my XXXXXXX mater, Case Western Reserve's University Hospital would be thrilled to work you up but unless you have insurance that would cover such a workup I think you're looking at one heckuva price tag. I don't know if they would be willing to work you up as an academically poignant case in exchange for you allowing them to parade through amphitheaters in front of youngsters in shortened lab coats which are generally unpressed and filthy from yesterday's spilled lunch..is a different story just to have people in longer white coats...usually just as filthy, with long Freudian beards and mustaches massage their chins and mutter, "Very Interesting....." !
I probably wouldn't advise going down the genealogical road just yet unless of course, you are merely talking about getting all the background history you can from anybody in the family who ever some unexplained set of mildly annoying symptoms that they either never told anybody about or if they did they were just expected to put with the inconvenience and find some compensatory mechanisms to cover themselves...such as DEPENDS barrier protection or stocking up on AUDIO BOOKS instead of standard copies of texts and other reading material.
Don't forget to "Feed the Shaman" whatever he needs to stay awake and alert....sounds like he's worth more to you right now than those CSF tests....
Nevertheless, gotta keep the faith though the way the brothers all say over here!
Are you able to get any of the lab reports printed out for you in English?
LOL
P.S. Almost forgot....."lymfoforma"--- never have seen that word. I also looked up LymPHoforma--- no such word in Medical Dict. Can you give me the exact context of that word? Obviously, sounds like something having to do with either a blood cell which is in the "form" of a lymphocyte or something having to do with the formation of lymphocytes.
I believe your neurologist is mainly looking at the possibilities OF:::::::
Detailed Answer:
Multiple Sclerosis, Chronic Fatigue Syndrome, hyperactive immune system status post viral infection (para-encepahlitic episode) are the top 3 things that your neurologist is likely thinking. Perhaps, something farther down on the list could be some sort of inborn error of metabolism having to do with lipid metabolism along the lines of an adult onset metachromiatic leukodystrophy or lipoid dystrophy of some variety.
Of course, I'm speaking (inappropriately) for your neurologist but from the articles that I've been pulling and looking at (including yours--- Good work Holmes!) that's my best guess.
The diagnosis of MS out of all this would be a real long shot given the fact, that you have no recognized white matter lesions or plaques to speak of...all published studies having to do with PRECURSOR abnormalities noted in CSF of patients having to do with FOAMY CELLS (i.e. fat or cholesterol laden macrophages) spoke of subjects who either had DEFINITE OR PROBABLE MS (and you have neither at this point) or who developed the disease very shortly after the discovery of the CSF abnormalities. Furthermore, many of the studies I've looked at were not recent and were all done from about 2001-2004. Hasn't been much work since that time in this area. The implication being that using lipid dystrophies of some variety just never really panned out as a useful marker to detect MS any better than clinical suspicion and/or MRI studies which are now recognized as the Gold standard of imaging. In fact, I believe it's swung a bit too far the other direction which is that if a lesion is seen on the MR of a demyelinating nature....it's MS until proven otherwise and if NO LESIONS are seen the patient CLEARLY DOES NOT have MS...(you're in the 2nd case for all practical purposes). Of course, the disease has to start at some point before ANY white matter lesions are seen and one of the ideas of looking for profiles of patients with lipid diseases was precisely for the purpose of categorizing patients and creating profiles that could predict the appearance of lesions.
However, it just didn't work out that way in the vast majority of the subjects studied and tested and so I believe that type of CSF assay has been essentially abandoned here in the U.S. Obviously, your neurologist continues to subscribe to that information....and again....by no means am I judging his decision to go down this path simply because it's not commonplace here....not at all.....quite the contrary...I think it's great that he/she wishes to pursue this line of questioning to its logical conclusion. If it leads to a dead end...so be it...but in some people as per studies in the early 2000's there was some success.
The other big difference between your CSF specimen in terms of the lipid abnormalities (as seen by the presence of foamy cells) and the ones in the studies diagnosed talking about MS is that there was for the most part ABUNDANT quantities of FOAM CELLS in the CSF because of the lipid abnormalities that the subject had, the autoimmune dysfunction and subsequent leakage of the blood, brain barrier. In your case, however, there doesn't seem to be an overly impressive amount of such cells....in fact, it is very possible that there are such cells present in normal CSF in subjects without any evidence of problems JUST BECAUSE.....the fact of the matter is we never look for them and so we're not used to hearing or seeing them on a CSF report. Therefore, they look odd...but there is a range of normality for those cells and I suspect yours may fall into that category....we'd need ranges though which either you didn't provide in your translation of the results or the pathologist failed to include as part of the report.
About the possibility of CFS......essentially, we have nothing in the CSF thusfar to point us in that direction and which is the likely reason why your results will take a couple of weeks to return. Your neurologist sent them off for all sorts of interleukin studies (I'm guessing)....if you're paying for all this I don't EVEN want to know what your XXXXXXX is likely to come out....I hope you've got insurance or you've convinced the government to splurge a few of their nickels on you....since you have so much to contribute to your society in the future (and I do not say that facetiously either....I think your government should be proud and feel lucky to have you in the populous.....they better give you a good workup--- especially since they likely provide the best health care for themselves, their families, and their friends out the country's limited resources....they should feel compelled to take care "the good ones" once in awhile!).
S/P infectious state with residual ongoing immune system hyperactivity.....sort of like what happens with rheumatic fever, or as put it ADEM.....except we're missing pretty much all of what SHOULD've been seen from a process like that if it were truly the culprit of such widespread dysfunction in terms of the white matter disease which tends to leave lots of footprints and fingerprint smudges behind....this one didn't.....so I think the likelihood of a post viral infection of some variety causing demyelinating or subcortical damage is almost impossible.
So there you have it....my 2 cents....which is what your neurologist may have told you anyways...I apologize for not being able to come up with anything of real value on this time around. I think you could clearly nix some of the other lab tests I recommended because in light of the new strain of thinking (which I like) none of those additional tests (heavy metal screening and a few others you mentioned hadn't been done yet) are going to help make a diagnosis of either MS or CFS.
Do I think Mayo would be interested in it? I don't doubt that not only Mayo but Johns XXXXXXX XXXXXXX General, XXXXXXX Clinic, and my XXXXXXX mater, Case Western Reserve's University Hospital would be thrilled to work you up but unless you have insurance that would cover such a workup I think you're looking at one heckuva price tag. I don't know if they would be willing to work you up as an academically poignant case in exchange for you allowing them to parade through amphitheaters in front of youngsters in shortened lab coats which are generally unpressed and filthy from yesterday's spilled lunch..is a different story just to have people in longer white coats...usually just as filthy, with long Freudian beards and mustaches massage their chins and mutter, "Very Interesting....." !
I probably wouldn't advise going down the genealogical road just yet unless of course, you are merely talking about getting all the background history you can from anybody in the family who ever some unexplained set of mildly annoying symptoms that they either never told anybody about or if they did they were just expected to put with the inconvenience and find some compensatory mechanisms to cover themselves...such as DEPENDS barrier protection or stocking up on AUDIO BOOKS instead of standard copies of texts and other reading material.
Don't forget to "Feed the Shaman" whatever he needs to stay awake and alert....sounds like he's worth more to you right now than those CSF tests....
Nevertheless, gotta keep the faith though the way the brothers all say over here!
Are you able to get any of the lab reports printed out for you in English?
LOL
P.S. Almost forgot....."lymfoforma"--- never have seen that word. I also looked up LymPHoforma--- no such word in Medical Dict. Can you give me the exact context of that word? Obviously, sounds like something having to do with either a blood cell which is in the "form" of a lymphocyte or something having to do with the formation of lymphocytes.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thanks again for such a long and detailed answer. I don't think there's many doctors here on this portal who will go actively study a complicated case.
What I gave you is all I got. I didn't get any more information whatsoever. I'll make sure to get a qualified English translation of the lab report including everything , such as ranges etc... and ship it off to you as soon as possible.
I also think that MS is highly unlikely, maybe unfortunately, because the other things except CFS sound far worse.
Chronic fatigue syndrome - well, there's no correlation between that and any findings in research so far so what can be said...
(((((Q1))))) by para-encephalitic episode, do you mean paraneoplastic encephalitis? or autoimmune encephalitis? I haven't managed to google up what para-encephalitis means. Or do you just mean ADEM?
As for ADEM, here are the thoughts of another neurologist here on this portal: (dr XXXXXXX Kumar)
=== beginning
The first episode in 2011, when you began to have urological problems and fatigue, seems to be post-infectious demyelination, which occurred after an episode of tonsillitis. In this condition, the antibodies produced against the infection, turn on against the nerve cells in brain and spinal cord, resulting in various neurological symptoms. This is also called as ADEM (acute disseminated encephalomyelitis). A spinal cord involvement can explain the urinary symptoms, especially as all urological examinations were normal.
The current episode also seems to be a post-infectious demyelination syndrome, and since in your case, it has recurred after three years, it could be called as recurrent ADEM. You did not have classical/typical symptoms of ADEM, however, in a small proportion of patients, ADEM can present in the way you described your symptoms. Also, MRI may be negative. That is the reason why we also combine evoked potential studies and lumbar puncture tests to confirm or exclude a diagnosis of ADEM. It would be worthwhile doing these two additional tests in you.
===== end
I presented this to my neurologist at the private clinic and he immediately prescribed spinal tap, EMG and evoked potentials.. They kind of respect foreign doctors there a lot…
(((Q2))) Doesn’t the fact that my problems have in both cases been post-infectious, haven’t been progressive but rather attack-like, where there’s an onset within the matter of a few weeks and then very long partial recovery, suggest that (a) the infection was to blame/ immunity system response and (b) it’s highly unlikely to be a genetic disease as that would be progressive rather than attack-like with recovery?
The insurance company is now paying for all the procedures I'm taking so no worries on that front. I'm not spending a nickel on that. Well, we don’t have nickels here :-) but czech crowns, but yeah… :-)
Mayo clinic has a special programme where they take people and pay for all their expenses if the case is sufficiently interesting. I believe mine could be. Besides, I've always wanted to get some kind of stipend, so why bother with university education when one can become an officially paid for lab rat of one of the most famous clinics on planet Earth? :P
Finally, when we have all the results, perhaps there’s some other things that could be done to complete the diagnostic process… I know we talked about it… but I’m pretty sure that if a good argument is provided I can convince the private clinic to do some other tests, which are not normally done. After all, they don’t pay for it either (neither do I for that matter) - it’s the state insurance company that has to pay for it… and they have some really good lobbyists at the clinic (they’ve made the government pay for a lot of things by now.))… It’s not like I’m a keen explorer of medical testing procedures (or do you think I am? ;))… but if for instance someone else will pay for PET or something like that, why not take it, if it can help, even an unlikely little bit? After all, I’m not a standard case.
The same applies to genetic testing - if they pay for a screen, why not do it? Assuming it’s completely safe and non-invasive…. Chances are if they test for a wide spectrum of things they might find something… or not…. but am I going to take the risk of not doing these tests and prolong this unpleasant situation if something could have been discovered, even if the probability of that is small? No…
((((Q3))))) - probably to be left after we have all the results:: I’m fully aware that there’s no test left that I can take to prove/disprove MS or CFS… but how about the paraencephalic episode, or the “”” inborn error of metabolism having to do with lipid metabolism along the lines of an adult onset metachromiatic leukodystrophy or lipoid dystrophy of some variety.”””?
— are there any tests I could take to satisfactorily disprove these things?
If, for instance, you write a paragraph or two where you explain that you think they should do this and that and I present it to the clinic they’ll do it. As I said above, this question is worth a discussion after all the results of the spinal tap have come out. Until then, it’s just a teaser question… but again, why not do them now if they will pay for it? I’ve waited for too long already and have no intention of waiting any longer. Life is short and I’ve spent a year on this now.
——>>> If there’s even the slightest suspicion that something along the lines of one or another disease may be happening, I’m going to take the test that you recommend to disprove it straight away without any delay, and the government is going to pay for it. Full stop. Prescribe me a battery of tests sir, please :-) And I’m not being facetious ;-) but yeah, let’s wait for the results… I’m just developing my argument here to spare myself the effort later. <<<<————
Of course, meanwhile, I’m focusing on the XXXXXXX thing and it’s going well psychologically. We’ll see how good he is with healing the body… maybe that will sort it out and I’ll be able to say a big FO to the whole healthcare system (excluding you of course, whom I of course won’t bother anymore :-) but whom I won’t FO :-) cause you’re a great person and a great doctor ;-).. so maybe it will help and though it will remain a mystery, you know what, I don’t care any longer. I don’t need to know what it is as long as it gets better and doesn’t come back. I’m still not going to become an MD :-) despite everything… perhaps I never told you but my degree is cognitive science…. how ironic… :-))))))) there’s plenty of stuff I’ve learnt thanks to this ‘disease’, albeit indirectly, that will come in useful in my research….
To put it in your own words, I’ve gone down the route of western medicine so I should take it to its conclusion and not stop a few miles before the end, whatever the end is, even if it’s a dead end… well, not dead as in literal dead…. :-D but a living dead end… well that sounds a bit zombie… ok, I’m giving up….
Anyway, I’ll get in touch again in about 10-14 days when the results become available… Keep well!
All the best,
XXXX
P.S. I hope you’re still alive after this rant and haven’t joined the zombies yet!
What I gave you is all I got. I didn't get any more information whatsoever. I'll make sure to get a qualified English translation of the lab report including everything , such as ranges etc... and ship it off to you as soon as possible.
I also think that MS is highly unlikely, maybe unfortunately, because the other things except CFS sound far worse.
Chronic fatigue syndrome - well, there's no correlation between that and any findings in research so far so what can be said...
(((((Q1))))) by para-encephalitic episode, do you mean paraneoplastic encephalitis? or autoimmune encephalitis? I haven't managed to google up what para-encephalitis means. Or do you just mean ADEM?
As for ADEM, here are the thoughts of another neurologist here on this portal: (dr XXXXXXX Kumar)
=== beginning
The first episode in 2011, when you began to have urological problems and fatigue, seems to be post-infectious demyelination, which occurred after an episode of tonsillitis. In this condition, the antibodies produced against the infection, turn on against the nerve cells in brain and spinal cord, resulting in various neurological symptoms. This is also called as ADEM (acute disseminated encephalomyelitis). A spinal cord involvement can explain the urinary symptoms, especially as all urological examinations were normal.
The current episode also seems to be a post-infectious demyelination syndrome, and since in your case, it has recurred after three years, it could be called as recurrent ADEM. You did not have classical/typical symptoms of ADEM, however, in a small proportion of patients, ADEM can present in the way you described your symptoms. Also, MRI may be negative. That is the reason why we also combine evoked potential studies and lumbar puncture tests to confirm or exclude a diagnosis of ADEM. It would be worthwhile doing these two additional tests in you.
===== end
I presented this to my neurologist at the private clinic and he immediately prescribed spinal tap, EMG and evoked potentials.. They kind of respect foreign doctors there a lot…
(((Q2))) Doesn’t the fact that my problems have in both cases been post-infectious, haven’t been progressive but rather attack-like, where there’s an onset within the matter of a few weeks and then very long partial recovery, suggest that (a) the infection was to blame/ immunity system response and (b) it’s highly unlikely to be a genetic disease as that would be progressive rather than attack-like with recovery?
The insurance company is now paying for all the procedures I'm taking so no worries on that front. I'm not spending a nickel on that. Well, we don’t have nickels here :-) but czech crowns, but yeah… :-)
Mayo clinic has a special programme where they take people and pay for all their expenses if the case is sufficiently interesting. I believe mine could be. Besides, I've always wanted to get some kind of stipend, so why bother with university education when one can become an officially paid for lab rat of one of the most famous clinics on planet Earth? :P
Finally, when we have all the results, perhaps there’s some other things that could be done to complete the diagnostic process… I know we talked about it… but I’m pretty sure that if a good argument is provided I can convince the private clinic to do some other tests, which are not normally done. After all, they don’t pay for it either (neither do I for that matter) - it’s the state insurance company that has to pay for it… and they have some really good lobbyists at the clinic (they’ve made the government pay for a lot of things by now.))… It’s not like I’m a keen explorer of medical testing procedures (or do you think I am? ;))… but if for instance someone else will pay for PET or something like that, why not take it, if it can help, even an unlikely little bit? After all, I’m not a standard case.
The same applies to genetic testing - if they pay for a screen, why not do it? Assuming it’s completely safe and non-invasive…. Chances are if they test for a wide spectrum of things they might find something… or not…. but am I going to take the risk of not doing these tests and prolong this unpleasant situation if something could have been discovered, even if the probability of that is small? No…
((((Q3))))) - probably to be left after we have all the results:: I’m fully aware that there’s no test left that I can take to prove/disprove MS or CFS… but how about the paraencephalic episode, or the “”” inborn error of metabolism having to do with lipid metabolism along the lines of an adult onset metachromiatic leukodystrophy or lipoid dystrophy of some variety.”””?
— are there any tests I could take to satisfactorily disprove these things?
If, for instance, you write a paragraph or two where you explain that you think they should do this and that and I present it to the clinic they’ll do it. As I said above, this question is worth a discussion after all the results of the spinal tap have come out. Until then, it’s just a teaser question… but again, why not do them now if they will pay for it? I’ve waited for too long already and have no intention of waiting any longer. Life is short and I’ve spent a year on this now.
——>>> If there’s even the slightest suspicion that something along the lines of one or another disease may be happening, I’m going to take the test that you recommend to disprove it straight away without any delay, and the government is going to pay for it. Full stop. Prescribe me a battery of tests sir, please :-) And I’m not being facetious ;-) but yeah, let’s wait for the results… I’m just developing my argument here to spare myself the effort later. <<<<————
Of course, meanwhile, I’m focusing on the XXXXXXX thing and it’s going well psychologically. We’ll see how good he is with healing the body… maybe that will sort it out and I’ll be able to say a big FO to the whole healthcare system (excluding you of course, whom I of course won’t bother anymore :-) but whom I won’t FO :-) cause you’re a great person and a great doctor ;-).. so maybe it will help and though it will remain a mystery, you know what, I don’t care any longer. I don’t need to know what it is as long as it gets better and doesn’t come back. I’m still not going to become an MD :-) despite everything… perhaps I never told you but my degree is cognitive science…. how ironic… :-))))))) there’s plenty of stuff I’ve learnt thanks to this ‘disease’, albeit indirectly, that will come in useful in my research….
To put it in your own words, I’ve gone down the route of western medicine so I should take it to its conclusion and not stop a few miles before the end, whatever the end is, even if it’s a dead end… well, not dead as in literal dead…. :-D but a living dead end… well that sounds a bit zombie… ok, I’m giving up….
Anyway, I’ll get in touch again in about 10-14 days when the results become available… Keep well!
All the best,
XXXX
P.S. I hope you’re still alive after this rant and haven’t joined the zombies yet!
Brief Answer:
Necessarily ULTRASHORT answer only because I must leave the office
Detailed Answer:
I've read through your impressively thought out treatise and answers to questions I had....My only purpose in sending this away to you at this point is to get something out the door within 24 hrs. since your last message and let you know that I've been thinking about the problems, responses you've gotten from other doctors, and what is going on with tests and so forth.
After all is said and done. I believe the best thing IN YOUR INTEREST to do right now is to allow the tests to come back that have already been performed and see what they show. The idea of this being some form of genetic disease or inborn error of metabolism is less and less appealing to me since I can't explain why any such problem should wait this long to show itself....the idea of adult metachromatic leukodystrophy is weak in that the MRI really doesn't show the typical white matter changes you'd expect to see.....they are not subtle to say the least...nor should there be subtelty in a case of ADEM...or in this case something more along the lines of CDEM (my acronym) to stand for CHRONIC demyelinating encephalomyelitis, etc. Which by the way also explains why you couldn't rightly put your GOOGLE FINGER on my other invented term of PARA-encephaltic episode or however, I termed.....I was referring to an ENCEPHALITIC LIKE illness since I couldn't remember whether your bouts of tonsillitis which I know were severe....you said you were bedbound for 4 weeks or thereabouts......but I didn't have the security of knowing that you were actually ENCEPHALITIC....again, nothing subtle about anyone suffering from an encephalitis....clear changes in mental status in terms of alertness and so forth. I didn't get the impression that you were truly obtunded or stuporous so that's why I termed it a PARA- episode.
I will reread your last writings and answers to my questions and revisit some topics of interest....but essentially I think the best thing to do right now is to slow the horses and wagons down a bit....let results from pending tests come back, take a moment to understand and digest them before cranking up the engine of the factory again.....I know you like testing....and so do doctors.....but it's thusfar adding more questions than we can answer and for that reason I don't think it's beneficial to continue adding or even doing any more tests (whether they were recommended or not) until we can take what we have, step back, and see what speaks to us.....
I hope that makes sense to you and look forward to hearing your thoughts....but do try and get some rest.....I've tried not to invent any more acronyms or terms to confuse you that are not readily GOOGLEABLE! LOL....
This query has utilized a total of 137 minutes of physician specific effort in order to read, review, research, and prepare a response for envoy to the patient.
Necessarily ULTRASHORT answer only because I must leave the office
Detailed Answer:
I've read through your impressively thought out treatise and answers to questions I had....My only purpose in sending this away to you at this point is to get something out the door within 24 hrs. since your last message and let you know that I've been thinking about the problems, responses you've gotten from other doctors, and what is going on with tests and so forth.
After all is said and done. I believe the best thing IN YOUR INTEREST to do right now is to allow the tests to come back that have already been performed and see what they show. The idea of this being some form of genetic disease or inborn error of metabolism is less and less appealing to me since I can't explain why any such problem should wait this long to show itself....the idea of adult metachromatic leukodystrophy is weak in that the MRI really doesn't show the typical white matter changes you'd expect to see.....they are not subtle to say the least...nor should there be subtelty in a case of ADEM...or in this case something more along the lines of CDEM (my acronym) to stand for CHRONIC demyelinating encephalomyelitis, etc. Which by the way also explains why you couldn't rightly put your GOOGLE FINGER on my other invented term of PARA-encephaltic episode or however, I termed.....I was referring to an ENCEPHALITIC LIKE illness since I couldn't remember whether your bouts of tonsillitis which I know were severe....you said you were bedbound for 4 weeks or thereabouts......but I didn't have the security of knowing that you were actually ENCEPHALITIC....again, nothing subtle about anyone suffering from an encephalitis....clear changes in mental status in terms of alertness and so forth. I didn't get the impression that you were truly obtunded or stuporous so that's why I termed it a PARA- episode.
I will reread your last writings and answers to my questions and revisit some topics of interest....but essentially I think the best thing to do right now is to slow the horses and wagons down a bit....let results from pending tests come back, take a moment to understand and digest them before cranking up the engine of the factory again.....I know you like testing....and so do doctors.....but it's thusfar adding more questions than we can answer and for that reason I don't think it's beneficial to continue adding or even doing any more tests (whether they were recommended or not) until we can take what we have, step back, and see what speaks to us.....
I hope that makes sense to you and look forward to hearing your thoughts....but do try and get some rest.....I've tried not to invent any more acronyms or terms to confuse you that are not readily GOOGLEABLE! LOL....
This query has utilized a total of 137 minutes of physician specific effort in order to read, review, research, and prepare a response for envoy to the patient.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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