Brief Answer:
Little Italy- Really?

Detailed Answer:
XXXXX

Now, to your question....I still would need much more information about your condition to be able to call you as ALS or MS....I continue to be on the opinion that while something sounds like it's certainly up...those 2 diseases would not be on the top of my list. In fact, at least 1 doctor you mentioned to me who has actually LAID EYES (and perhaps hands, I hope??) on you didn't think you had either so now there's my opinion even without seeing you that confirms this opinion. Having said that I would certainly be willing to think differently IF I HAD THE DATA TO SUPPORT THE HYPOTHESIS...So far, none available. In all the conversation that you've mentioned so far the one thing that nearly everyone else mentions when they ask me about ALS symptoms that they think they have which you haven't said one thing about are twitching muscles...and even more commonly TWITCHING OF THE TONGUE. In cases of advanced or advancing ALS twitches of affected muscles begin appearing and especially in the tongue. Yet you don't mention this detail.

ALS typically affects limbs SYMMETRICALLY which means "equally." If there is going to be "limited dorsiflexion" on the left then, there should be approximately the same limitation on the right...there doesn't seem to be. Weakness of flexing your foot backwards can be associated with a radiculopathy and I think if anything that is a more likely diagnosis than anything else. In other words, remember what I said about ALS...it is very strongly PURE MOTOR WEAKNESS...there are NO SENSORY ALTERATIONS to speak of nearly throughout the course of the entire disease. Also, you haven't mentioned anything about losing uncontrollable amounts of weight, multiple falls, weakness in the UPPER EXTREMITIES, swallowing and choking difficulties.....you see these are all other things having to do with ALS that are very important that you've made no mention of so again, if I'm to base an opinion or a TELEMEDICINE DIAGNOSIS on the basis of things that you've mentioned then, I say that there is just too much missing from the ALS and the MS picture to make the call.

Can you supply with photographs of your legs? Well, you in general? Can you take video of how you walk and upload it to a DROPBOX account so I can see it?

Yes, dysautonomia can precede the development or progress during the course of ALS (almost never in MS) but then, it's not ALS and there is a different name. And also, that form of motor disease has a different overall picture and again affects men much more frequently than women. I believe I also asked about how the diagnosis of dysautonomia was arrived at and whether or not that was worked up a specialized center for autonomic function or was simply a bedside diagnosis? Did you have a tilt table test, paced breathing testing along with EKG, sweat box testing?

In order to really push this idea of motor neuron disease (ALS) or demyelinating disease (MS) significantly down the track I would ask that you have performed the EMG/NCV studies which were recommended as well as an MRI of the brain, cervical, and lumbar spinal cords with GADOLINIUM CONTRAST.

I hope you are happier my dear that I am not calling for diagnoses of ALS or MS....you really DON'T want to be told you have those do you? Where did you get those ideas from? Was it from your reading on the internet or from friends talking to you? You have to be very careful how you interpret medical information that you read online. It must be taken in context with the physical examination and really only a qualified expert should be making those sorts of calls on you....

I know you want an answer...so that's why I'm asking for the pictures, the EMG/NCV, and the MRI studies. I don't think it's necessary to do a spinal tap at this time until we see other things. Spinal taps are almost never needed anymore to make the diagnosis of MS. And again, maybe you can make a trip to XXXXXXX because if I get a chance to explain lay eyes and hands then, I will have a much more comfortable idea of what is going on plus we can discuss how this all evolved because that's equally important.

BTW, thank you so very much for your kind feedback.

And don't forget that to get your questions directly to me after this thread has been closed out all you need do is look me up at:

bit.ly/drdariushsaghafi

You would then, fill out the forms with your information and question and it would be sent directly to my attention. Also, don't forget that even though I try answering questions as soon as possible some times because of other obligations it can take up to 24 hrs.

The query has required a total of 58 minutes of physician specific time to read, research, and compile a return envoy to the patient.

COME TO XXXXXXX and enjoy your family, the summer fun, but more importantly "show me them legs!" Ha! If you were to come and stay for at least 48 hrs. I would promise to make room for you in the schedule....even if it had to be on a Saturday or Sunday...I've opened the office in the past for patients and I visit them at their homes frequently on weekends or after hospital rounds.

---

Brief Answer:
Require further testing for definitive diagnosis

Detailed Answer:
Hello. I'm very sorry that you're feeling down and can't emphasize enough to you that you'll need to put some trust and faith into a couple of people at this point who can help. One would be a counselor who you can communicate with by telephone if you don't feel like leaving the house. If you are having thoughts of harming yourself then, I urge you to consider calling your local hotlines that are set up specifically for folks who are having a hard time dealing with physical or mental issues and need a person's company. The 2nd person who you need to put some faith and trust in would be the local doctors who you've engaged to do certain tests and are standing by to help you put all this together.

Of course, I'd be honored if you chose me as a 3rd who is telling you that truly if I thought that ALS or MS were the most likely things causing your symptoms I'd tell you but there just isn't that you've said about your condition that really peg those 2 diseases down XXXXXXX AS OPPOSED TO OTHER THINGS which are much more common. Keep in mind that I'm not saying that nothing is affecting you. I know you'd be out there with the best of them doing exactly what you were doing before all this happened. But you need the followup and workup in order to put these pieces together. And going to ER's constantly is not the answer. They are simply there to make sure you're not bleeding out or in septic shock. Everything else can be seen "tomorrow by your doctor...." Right? So, that's not the preferable way to go here.

No doctor is going to be smart enough to guarantee a diagnosis in a case like yours without the MRI's and the EMG/NCV because those will reveal quite a bit. Also, a neurological examination and good laboratory workup are tantamount to any diagnostic testing. And again, I would definitely hold off on any spinal tap until other tests mentioned and some labs have been completed.

I wish XXXXXXX were as close as Little Italy. ;)

Postural tachycardia can be due to many things not simply dysautonomia. For example, am I correct in assuming that since you've been feeling this way your appetite and intake of fluids hasn't been what it probably usually is or should be? And you live in a hot climate area. Ergo, the possibility of dehydration and even hypoglycemia or less than adequate nutrition may explain this symptom. Thyroid functioning may also be altered and that can affect this symptom.

Most importantly, I'd personally like to see the NUMBERS and understand how they actually tested you for postural blood pressure changes since there's a specific method that really is preferable than the standard ER or office version of "sit and stand" with 1 reading. Heat intolerance? In New Mexico??? I guarantee that I'd be intolerant of your heat down there....and I my dear am USED TO HOT ENVIRONMENTS because I wrestle in rooms that are upwards of 85 degrees on a regular basis...so I know what heat is like. I think you are trying to peg Uthoff's phenomenon but again there are parameters that are looked at and clinically measured when discussing this symptom in the context of MS or any other type of demyelinating disease entity which I cannot be sure is taking place simply because I haven't had the opportunity of examining your person.

Is there any way you can get some pictures uploaded of what your legs and arms look like? Or a video of your walking?....you could throw in one of you showing me a smile (which also serves a neurological purpose believe it or not so I can check out Cranial Nerve VII)...LOL...

Heel to toe being off is not surprising only because you are stating that you have atrophy and weakness in the left leg, correct more so than the right? Therefore, imbalance is certainly an expected finding and doesn't point specifically to a disease but rather is a consequence of some other process.

Let the doctors look for fasciculations as well. Any muscle or group of muscles which is deteriorated for ANY reasons including being compressed by the spinal column can develop fasciculations. Dehydration, hypoglycemia, and hypothyroidism can cause fasciculations as can infectious entities such as UTI's and URI's. Thinking you saw fasciculations and having a doctor verify the presence of clinically significant fascics in a patient with motor neuron disease are 2 very different things. You should allow the professional the opportunity to show you why he went into so much debt getting that piece of paper he/she calls an M.D.! HA!

May I suggest you not read so many things on the internet which can be a wonderful source of very good information but it is SOOOO MUCH more to your benefit to make the appointments and see the doctors there to get some more testing done so we can finally have objective information to go from.....OR GET YOURSELF A PLANE TICKET so that we're within HOUSE CALL distance! I'm sure your mom and her family would want to see you put up a fight...I have friends from Little Italy who are affiliated with the Alta House up the road...I know the owner of Primo Vino and Presti's....names you may be familiar with? They go out and get what they want...so too should you my dear

....So too should you!

Now, would you please let me know that you are calling to make those appointments to get the examination done? You may even ask for a copy of the doctor's notes once they are available and I'm happy to give you more opinions.

Don't forget....this is all you need do to look me up here:

bit.ly/drdariushsaghafi

The query has required a total of 90 minutes of physician specific time to read, research, and compile a return envoy to the patient.

C O M E V I S I T C L E V E L A N D! It'll be very good for you and your family would be delighted to help I'm sure.... ;)

---

Brief Answer:
Need a diagnosis by legitimate objective means

Detailed Answer:
Alright young lady....you now get my undivided attention....what a day it's been! So, I've read through your 2 posts here and I guess you're simply not going to believe me despite what I'm telling you as a professional...WOMEN!.

The truth of the matter is ANYTHING is a possible diagnosis, right? Anything in this world is possible. XXXXXXX XXXXXXX COULD end up back in the White House...how's that for shocking but true???

Heck, there is even a calculable probability that the sun will not rise tomorrow...did you know that? Learned it in my course on Probability and Statistics when I was in college....it's small to be sure....but it exists.....There's even a probability that exists that says that if you drop a can out of your hands enough times that on one of those drops, the can will fall UP into the sky instead of down to the ground! I'm not kidding you on that one....again, a very miniscule number that you can't even see with a microscope...BUT IT EXISTS.

In the same way....I suppose you are going to force me now to admit that there is a possibility that I am dead wrong and that the diagnosis is either ALS or MS...and there is not another possibility in the world...I think that's essentially your bottom line, right? You even said it yourself...that you diagnosed it...by watching videos on the internet....hmmm.....do you think I might've overpaid for my Medical Degree by going to school for about 15 years AFTER high school, buying all those useless books, and worked in hospitals for 80-100 hrs. per week for 4 years followed by all the exams and boards I took....all for nothing?

Should I have waited till the age of the Internet and learned medicine that way?....LOL.....sounds absurd a bit doesn't it? But in fact, that's what you're saying....so, let's try it your way....let's say there's a possibility that you have ALS or MS and that nothing I say makes any sense or applies....now, I'm on your side of the equation. So here we are...of all the possible things in the universe that could be affecting you....it's either one or the other and nothing in between...well, I really can't argue that point when you think about it can I? Obviously, I don't even have a tenth of the story that goes behind this whole illness, right? I really don't know anything about the hospitalization that you've been talking about...I don't know what happened that led up to that, what the diagnosis was, how things evolved, how things deteriorated.....that's really quite a mystery to me to be honest....so you do have me on that one....you are definitely operating with much more information than I have been privy to....granted. Plus, I've never seen you, touched you, examined you, asked you to walk in front of me, or bend down to touch your toes, I've never asked you to follow my finger, stick out your tongue, or sing a scale Do-Re-Mi....which I often do just to see if my patients are musically inclined as well! So again, you are absolutely correct, I really do not have even the most initial fraction of information that I SHOULD HAVE to be making a diagnosis on you...YET....yet, ...... yet......I have the audacity to say that you DON'T have ALS or MS....based on what? A few lines of symptoms that you provided...things that you believed told the story adequately enough to make an educated guess....geez..how presumptuous for me to do that? So, I concede.....your diagnosis...and let's be clear about this...it's YOUR diagnosis that we're dealing with....I think you told me that at least one other doctor if not 2 (psychiatrist and neurologist that wanted to do a spinal tap)... did not believe you had either of those entities...but I'm sure they don't have full information either....so their opinions should be rightfully be discarded. Therefore, we're left with your diagnosis of either ALS or MS....

But you're still missing 1 big key factor to this whole thing.....PROOF....you have no PROOF for either of your diagnoses my dear....I'm not talking about the leg atrophy, I'm not talking about the dysautonomia, or Uthoff's phenomenon....I'm talking PROOF POSITIVE...stuff that you could take to ANY DOCTOR on the planet and say this is what it is and they could not do anything but look you back and say, "you are right." You're missing the proof.....

So far, you've got symptoms and conjecture....no PROOF....what am I talking about you ask?

In medicine, PROOF comes by way of the Pathologist's office...He's the guy that swings the gavel on the bench and says, "ORDER! ORDER! ORDER IN THE COURT!" It's not the neurologist, it's not the internist, not the radiologist....and not the patient....it's the pathologist. If you go to any Medical Conference where a bunch of "know it all's" are sitting around a big table with some fruit in the middle that nobody touches...but hell, it looks good on the table...and everybody is taking their best guess as to what Patient X has based on the radiographs, the labs, the examination, even the detailed history that some bushy tailed, bright eyed resident took for 2 hrs., you know who always has the LAST WORD when it comes to the diagnosis? You know who is the one that everyone finally looks to for the RIGHT ANSWER to the problem? It's the PATHOLOGIST! The guy with the microscope, the slides, and stains, in his lab jacket...they guy that cuts the cadavers open and looks up and down a person's innards and their outers, in their head, their stomachs, and up and down their colons to finally come up with the answer. You don't have that person's opinion...just your own....

If you want proof positive for anything you're saying XXXXXXX dear...then, the PROOF comes by way of biopsy, processing, and finally microscopic analysis. Every disease in the universe has a fingerprint, a footprint, a game plan which is different from any other disease...It has a unique way of leaving its mark on the body that is unlike any other disease ever discovered or any disease that will ever BE DISCOVERED. That is an axiom of medicine. Consider it the E=mc^2 formula in medicine....You my dear don't have the PROOF.

For ALS the pathologist identifies the disease in the following ways...so nice to have choices--- Ready? I thought you'd like to see just exactly how a pathologist guarantees a diagnosis of ALS (This comes from a textbook I have...which I probably should never have read since it's on the internet now!):

Whilst the diagnostic use of El Escorial Criteria has been shown to correlate well with neuropathological features in ALS (Chaudhuri et al. 1995), diagnosis can only be absolutely certain on necroscopy. The major pathological features of ALS are degeneration of the corticospinal tracts and extensive loss of lower motor neurons (LMNs) or anterior horn cells (Ghatak et al., 1986 Hughes, 1982 XXXXXXX and Garofolo, 1995), degeneration and loss of Betz cells and other pyramidal cells in the primary motor cortex (Hammer et al., 1979 Maekawa et al., 2004 Udaka et al., 1986 and reactive gliosis in the motor cortex and spinal cord (Ekblom et al., 1994 Kawamata et al., 1992 Murayama et al., 1991 Schiffer et al., 1996

An established hallmark of ALS is the presence of various inclusion bodies in degenerating neurones and surrounding reactive astrocytes (Barbeito et al., 2004 Ubiquitinated inclusions are the most common and specific type of inclusion in ALS and are found in LMNs of the spinal cord and brainstem (Matsumoto et al., 1993 and in corticospinal UMNs (Sasaki and Maruyama, 1994 They are classified as ‘Lewy body-like inclusions’ (LBIs) and ‘Skein-like inclusions’ (SLIs) (He and Hays, 2004 Kawashima et al., 2000 The exact composition of such inclusions is not known, although proteins identified so far include (in varying amounts) ubiquitin (Leigh et al., 1991 Murayama et al., 1989 Cu/Zn superoxide dismutase 1 (SOD1) (Shibata et al., 1996; Shibata et al., 1994), peripherin (He and Hays, 2004 and Dorfin (a RING-finger type E3 ubiquitin ligase) (Niwa et al., 2002 Accumulations of intermediate filament proteins (mainly hyperphosphorylated neurofilament subunits and peripherin) are found in hyaline conglomerate inclusions (HCIs) and axonal ‘spheroids’ in spinal cord motor neurons (Corbo and Hays, 1992 Munoz et al., 1988 Sobue et al., 1990 and pyramidal cells of the motor cortex (Troost et al., 1992 in ALS post-mortem tissue.

Additionally, Bunina bodies (BBs), which are cystatin C-containing inclusions, are found in the cell bodies of motor neurons in ALS (Okamoto et al., 1993 Sasaki and Maruyama, 1994 although these are now thought to be less specific for ALS than the ubiquitinated and neurofilamentous inclusions, as they are similar to structures found in neurons of aged rats and humans (Kusaka, 1999 Another subtype of inclusion bodies found in MND are Crescent Shaped Inclusions (SCIs), often found in the upper layers of the cortex and dentate gyrus in MND-Dementia (al Sarraj et al. 2002). UIBs are thought to result from the breakdown of abnormal proteins caused by oxidative stress, implicated in the pathogenesis of ALS (Alves-Rodrigues et al. 1998). They are also found in transgenic mice expressing the G93A SOD1 mutation, a model of Familial ALS (Ince et al. 1998).Other neuropathological features seen in ALS include fragmentation of the Golgi apparatus (Fujita et al., 2000 Fujita et al., 2002 Gonatas et al., 1998 mitochondrial vacuolisation (Okamoto et al., 1990 and ultrastructural abnormalities of synaptic terminals (Sasaki and Iwata, 1996



But there's only one problem with all of that step by step ready made ALS diagnostic certainty recipe that a Pathologist would use to give us the PROOF you need XXXXXXX ...the patient basically has to be dead in order to get any of those samples! Not terribly convenient to ask the pathologist to make the diagnosis in this case, wouldn't you agree? So, we're back to what I had recommended before....we need the electrical studies...EMG/NCV....that would be the most OBJECTIVE thing we can do in order to come as close as possible to making the definitive diagnosis. That, in addition to a muscle/nerve biopsy....BUT I do not recommend doing the biopsy if we instead start with the EMG.....that will tell us with high degrees of certainty when combined with a good NEUROLOGICAL EXAMINATION PERFORMED BY A NEUROLOGIST.....not by the patient....NEUROLOGIST whether or not the patient has a diagnosis of ALS or at least some type of motor neuron disease.....

---

Brief Answer:
Wish XXXXXXX were spelled CLEVELAND!

Detailed Answer:
Little by little we're going the story down on "virtual" paper aren't we? And now you see why I didn't go into psychiatry? They wouldn't take me! LOL.....I'd rather be in a field of medicine where complexity of the STAR ORGAN is such that IT can't even understand itself. Do you think XXXXXXX Aquinas could get his teeth into that one? Personally, I think XXXXXXX Aquinas got it wrong....you don't prove God's existence by assuming he doesn't exist and then, come to a contradiction which proves he does exist. You start with the premise that there is NO NEED to prove the existence of GOD since it is simply not possible for something to prove its own existence if there is nothing else to confer with in order to check the validity of one's understanding...GOD EXISTS FIRST AND BY DEFAULT. Then, the universe flowed as one of the XXXXXXX possible permutations of chance.

And so how can I help one called XXXXXXX ..XXXX..numero Nueve dampen down those uninhibited circuits firing like cumquats aimed at a college dorm across the way using a tennis ball canister and methanol gas as the propellant? Did you ever have someone aim a Cumquat at you from the top floor of a dormitory....right there in Little Italy...CWRU, the Caseies as they called themselves...those DWEEB ENGINEERING students who couldn't stop creating some of the absolute craziest things to bother those of us who were simply there trying to figure out how to get into the damn MIDDLE of that Bell shaped curve! LOL.....But let me tell you, those cumquats weren't nearly as fun as using the fire hoses in the XXXXXXX Towers at Ohio State University (right behind the Horseshoe Stadium) in order to knock out windows from one floor down to another....girls yelling and screaming trying to dodge cylinders of high pressure flow water that 3 of us guys had to hold stable while we aimed it and fired....wow....what vagrants we were....and we all became DOCTORS!

How's about if we work on getting you to try and separate YOURSELF from YOURSELF....if that makes sense....just until we can get a diagnosis? Can I get you to do some deep breathing exercises and not think of illness, no sickness, nothing except that we need a diagnosis of your body....YOU need a diagnose of your body....and for just the time it takes to accomplish that....you (Sra. XXXXXXX Vitale) will "loan" us her body..with some leg weakness and a few other things that have stopped working over the years and allow us to make a diagnosis...whatever it takes.

I need for your body to get diagnosed....YOU may stay behind and rest where you feel comfortable...but I'd like your body to go to the Neuro's office to get diagnosed for just a minute....can you allow yourself to do that much?

And then, I must tell you about one particular patient of mine with ALS who is a pediatrician and who I invited to the Happy Dog Bar on XXXXXXX and W.58th St. in XXXXXXX I didn't invite him to drink because he would've choked.....BUT HE DRANK ANYWAYS! And believe it not he really didn't choke either....they said he would but he didn't! I'll tell you all about him...he is alive and HAPPY, SMILING, AND SENDING EMAILS TO EVERYONE EVERYDAY. BTW, we went to the Happy Dog because there was classical music playing that night....I was performing as well with the Trepanning Trio (we had 15 musicians in the group that night!)....

But before I tell you about the good Doctor I'd like you to get diagnosed! I understand about your intuition...and I also get the fact, that little by little you're adding information to the story....but I am going to keep going back to the neuropsych's opinion, who actually physically saw you, which stated that in his opinion the chance that you'd have ALS was about 5%. Can you just through the testing and then, I can tell you the story of the pediatrician who would've disagreed with you wholeheartedly about the quality of his life....I really don't know how he does it...and I'm not sure he does either....but it's really pretty miraculous how nature can provide things to those who may be lacking in one area and then, they somehow get bolstered in other areas that they're not even aware of....does that make sense?

20 seconds to go on this response......Write back.....B-R-E-A-T-H-E!

---

Brief Answer:
We need to close this query down

Detailed Answer:
We will need to close this query down as the maximum # of questions per question opened is 4. However, you have another thread which is open and still has room for 1-2 more questions so there is no need to open another question thread at this moment. Nor should you answer this question.

Please CLOSE THIS QUERY, give me your HIGHEST STAR RATING (Be nice!), and some commentary on how poetic but scientific I've tried to be! LOL....

I will recopy what you've written here and transfer that over to your other still open question and say a few words about some statements you've made here as well as answer your question about the antibiotics for MND and then, you can respond to that question.

So DON'T answer this question....just close it down, rate, and I will see you on the other question but later tonight. I'm still at the hospital and I won't get home for at least another few hours....also have wrestling practice so keep your fingers crossed that I don't get beat up too badly by those young college bucks! LOL.....

And yes, I want you to get a firm diagnosis of something first before I tell you about the doctor with ALS who I think is one of the most inspiring individuals I've met. He must've been an XXXXXXX to his patients and they will be so sad when they here he has passed at some point in the future....but for today.....he's going at FULL TILT....which is as FULL TILT as I've ever seen an ALS patient go...even more so than XXXXXXX Hawking.

See you on the other question in a few hours my dear......

You know the drill:

B-R-E-A-T-H-E

---