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.....

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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.

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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.

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