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Is Antibiotic Therapy Advisable For MND?

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Posted on Thu, 10 Sep 2015
Question: dr saghafi will you be able to answer my last question and this one have ypu heard of antibiotic therapy for MND i am struggling i made an appt wiyh a neuro and know what the verdict is i am hopeless at this point in time please answer and tell me how people cope with such bad news LS
doctor
Answered by Dr. Dariush Saghafi (3 days later)
Brief Answer:
Okee Dokee Young Lady...here we go--

Detailed Answer:
Did you visit the neurologist today? What was the conclusion after examining you? Did you get the EMG?

Antibiotic therapy for MND? Well, it all depends on if there's an infectious source that is causing the motor dysfunction. If you've tested negative for Lyme then, I'm not sure what the impetus would be to try antibiotic therapy since the reason it is thought to work would be on the supposition that the Lyme disease would be responsible for causing the motor neuron dysfunction.

HOWEVER, and you will hear me repeat this over and over until either YOU or I go BLUE in the face....you do not have a diagnosis and I would like to politely and professionally insist that you not presume over your neurologist or neuropsychiatrist who have seen you and have yet to make any determination as to what you do have....the fact is I understand that there is history of sorts pointing to some type of condition or syndrome involving muscle weakness, atrophy (per your report; I've asked for some photographs but you've not sent any) so all of that is understood. Still the diagnostic possibilities for any doctor worth his salt are wide and things need to be narrowed down and excluded according to facts.

Once they diagnose it formally then, let's open up the floor to discussions having to with the possibilities of this, that, or the other? How's that sound? And then, I'll tell you the story of Dr. Brown which I think should impress you NO MATTER WHAT THE DIAGNOSIS turns out to be.

How do people handle bad news? Well, just like anything in life...there are some who seemingly handle it well and take things one step at a time and others who not so well. I believe that when news is HEAVY and burdensome, no matter of which persuasion you happen to be...it's always a terrific idea to have a professional counselor to be able to talk to....so in the same spirit I think it would be great if you had someone to be able to use as an outlet....I'm happy to offer myself but as you can see....I'm not much of a professional counselor...my bedside manner is likely not what a teacher of the subject would consider so patient or caring...but I sense that you like "rough around the edges...." at least a little bit...and I can certainly be that! LOL.....At the same time, I try and convince you and all of my patients (especially when thinking of someone such as Dr. Brown) that no matter what your diagnosis and no matter how many feet you have that may not work or be dysautonomic....that you are much more valuable to the human race as a fighter than as a succumber. You've come from Italian Stock...where from may I ask? Sicily (had a young lady in college who I knew from Sicily and she was very nice when wanting to be nice and when I pushed her buttons...she was absolutely HELL on wheels....) So, I would encourage you to channel all that type of energy against whatever is trying to make life more difficult for your BODY....your mind is quite fully intact and racing a mile a minute.....I would ask that you take that great flow of ideas that you have which are negative though and turn them around into positives.

Can you become for example a repository of ideas for people who may have the same physical difficulties you're having and can you come up with ways to WALK THE DOG, DO GARDENING, I dunno....anything else that you were saying you can no longer do....I would challenge you to think and create ways to do those things....just like a person who is born without arms or without legs and who can still dress themselves, who can still do household chores....and who can even HAVE CHILDREN AND RAISE THEM in a normal environment. These people exist and need to get much more attention since they are so awe inspiring to watch and listen to....THAT'S what XXXX can become.....we need your ideas, your thoughts as to how you're living with these less than optimal circumstances of a physical nature....and how to turn those into a positive.

15 seconds left to answer this question.......Write back XXXX XXXXXXX (which means Beautiful in Spanish)! LOL......

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dariush Saghafi (1 hour later)
Dr. Saghafi, I am despondent tonight. When I push myselfto do minimal stuff around the house I get fatigued and weak. One of my doctors who conferred with a neurologist who is suppose to give me a referral suggested a type of neuropathy because in his 32 yrs. of practice he never saw als present itself withcardiac dysautonomia or orthostatic intolerance. Well I do not have pain and the auto stuff could be some type of morbidity. I did not send pictures but both legs are thin with similar measurements so atrophy is present. To me there is no other diag. unless a miracle occurs. I ask myself what did I do for this to happen ??not enogh fat in my diet, too much stress from the OCD and PTSD why why why. So I am about three months into this not much time left to live. I think of last summer while attending a wedding in XXXXXXX and not doing well with humidity (now totally heat intolerant, XXXXXXX was before) --- Ia few times I felt like I didn't have the strength to stand. It passed and not until end of May and XXXXXXX that I felt all the other things. I know I have good Southern Italian stock (napoli,Campobasso and of course some Sicilian) but sorry to say I inquired about assisted suicide today. Yes this is a dagger. You see pts. dont need the official diag. because they go by How they feel and function as well as theirgut. The weak spells, the weakness, lack of stamina, extreme fear are daggers the daggers to one's being and spirit. I'm a shell of person, most of the person has left. Tell are you now 100% sure now that my diag. will be ALs and no other I want you to admit this after all my ranting and insight and soulful retching. XXXX

dr. saghafi, when I said morbidity i meant comorbidity.

Dr. saghafi oh forgot to ask could i have had this als longer than I think. just wondering although i never felt as badly as now. XXXX
doctor
Answered by Dr. Dariush Saghafi (14 hours later)
Brief Answer:
Very sorry that you're feeling down...

Detailed Answer:
And therein lie the limitations of the neurologist....yes we work with brains but only to the extent that they lie still and don't EMOTE very much....or better yet....AT ALL! As soon the brain confers some type of personality on the individual or gets them to react emotionally....all bets are off and I have to punt to the psychiatrists and psychologist. I don't know really how to cut through your OCD and other elements that prevent from embracing the concept of diagnosing first, worrying later. From where I sit...that makes the most sense....it is certainly the most LOGICAL way to proceed if one wants to help oneself with knowing the best information possible. My name is Mr. Spock (Leonard Nimoy....we miss him!).

Something tells me that simply agreeing with you just for agreement's sake would not really help you come away from your concept of whoas and sadness....therefore, I certainly don't wish to mislead you into thinking that my opinion is something that it is not.

I am not very suspicious at all of ALS or MS. It does concern me very much that you would consider assisted suicide. Is that possible in New Mexico? Not in Ohio as far as I know. Is there not a hotline you can call for when people feel really depressed and so forth? Do you have a therapist who is prescribing you medication to calm your racing thoughts down? You could certainly use something along those lines and to wash it down with some really tasty Italian Pasta and to follow it up with some Lady Fingers for dessert! LOL...

I think neuropathy is certainly plausible or even radicular compression to give you the symptoms you have....but MND is not that high up on the list of possibilities. And I'll give you another good reason....you're still around. Although I do certainly have patients who have the "long term" form of ALS and who have been around upwards of 10-15 years...the vast majority of patients, once diagnosed (I guess by self or other means) have about 18 months before it's the curtain call...and they won't even allow an encore! In your case your longevity with this type of picture is far too long a duration for the Upper and Lower motor neuron disease type that I'd think would be more likely. Oh, not to mention that you have a neurologist with 32 years of experience (decidedly my SENIOR) saying that he doesn't think it's ALS.....get the EMG/NCV already....if you have to pay for it...do it....I'm really chomping on the bit for that test.

I'm still interested in your LEGS! Now, how can refuse someone asking to please see them legs?? Where is your vanity woman?!? And with the legs how about a faceshot and some smiles across the miles?

Have you had Pulmonary Function Tests done? Someone with advanced or advancing motor neuron disease would need to be screened frequently for pulmonary muscle weakness which is usually the most critical set of muscles to get weakness in MND. I get the distinct impression that you have plenty of breath and are not barely able to balance your head on your shoulders as is so common in advancing ALS.

So, teach me a bit about OCD here...because I really should develop a patience and tact with folks that I feel I don't have enough of....but tell me...If the neurologist were to do the EMG/NCV as well as the MRI of the brain and discover that NOPE....THERE'S NO EVIDENTIARY SUPPORT FOR EITHER ALS OR MS....would you ACCEPT that diagnosis or would you basically think that the doctor got it wrong?

So, now the ball is in your court....don't be too harsh on me....TEACH ME PLEASE.....and send me pictures.....of 5-10 years ago if you'd like...show me some examples of what you were doing and who your friends were that you hung out with back them....did you still see or hear from any of them?

With your next response and mine back to you we will need to CLOSE THIS THREAD and start another if you feel it necessary. Would you not want to save the money and catch a Red Eye to Cleveland? I live 15 minutes away from Little Italy and would be happy to conduct a house call down in the BARRIO!

I hope these answers satisfactorily addresses your question. If so, may I ask your favor of a HIGH STAR RATING with some written feedback?

The query has required a total of 68 minutes of physician specific time to read, research, and compile a return envoy to the patient.

Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
doctor
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Follow up: Dr. Dariush Saghafi (3 hours later)
Dr. Saghafi, That's interesting about the pulmonary muscle weakness. I wonder if the dysautonomia and tachy I have and a uncomfotable feeling (not pain) in my chest like a trembling weakness is related to this pulmonary weakness. It gets more and more frightening. The only related symptoms prior to the onset of all this 3 months ageo was the weakness I felt in my legs on two occasions last summer. In the past 10 to 15 years ago I had continuous tingling in the leg and foot for a number of years. Is it possible I had ms like syndrome then and now this dreaded disease. Very symptomatic today. You mentioned self diagnosis well then I have maybe a few months. wow. XXXX

Dr. Saghafi, I guess my self diagnosis does count and my dysautonomia will have a very negative bearing prognostically. In a hail of nightmarish outcomes. Still trying to put the pieces together. It won't be a happy puzzle. All now is connected in this web of torture. My question or querry is how does one arrive in this place and maintain any sanity. Ready to hang it up ......XXXX

Excellent review for doctor saghafi

Dr. Saghafi you did not answer my latest questions
doctor
Answered by Dr. Dariush Saghafi (22 hours later)
Brief Answer:
Don't forget young lady-- network rules give up to 24 hrs. to reply

Detailed Answer:
Trust me, my eye is always on the clock....it's just today was an extraordinarily busy day in the office where I still am and then, I won't be available again until rather late, possibly tomorrow but let me see what you've written in the interim.

The intercostal muscle weakness that I mentioned which is typically seen in ALS as it advances causes increasing difficulties with breathing. Had you had any hint of this problem you would've said something about it long ago when we first started our discussions. There is never any pain in the chest either. Again, you'll have to please understand that what I say about things in no way applies or is meant to apply to your case. You haven't even sent me a picture of yourself so I can AT LEAST SEE WHO I'M TALKING TO! lol......let alone making comments about respirtory distress symptoms.

Your neurologist I'm sure will order appropriate testing of pulmonary function studies if they feel it is appropriate. I'm "virtually" certain your lungs are in terrific shape. If you had paresthesias a number of years ago that resolved and now has resurfaced....I think it would've been more likely to have come back as numbness and tingling...(that's how it usually happens) rather than "metamorphisizing" into a motor type of problem....which again, I don't have any direct knowledge of since you won't take your iphone and click me a few pictures.

All I have to say is that you must've been a model on the cover of LIFE back in the day....is that why you won't send me any of your pictures.....you're vanity.... ;) Let's take a few deep B-R-E-A-T-H-S please. From the way you're presenting things...trust me my dear....you'll be around much longer than a few more months....guaranteed! And I'm always right about those kinds of hunches...even when making LONG DISTANCE PREDICTIONS!

Now, I have to shove off to wrestling practice with the lads over there at XXXXXXX XXXXXXX University so please behave yourself....don't go writing any more half cocked thoughts until I get back later tonight....maybe you'll XXXXXXX with pictures. If you will then, here's what I'd like....Full face, Full body, legs (side by side), arms (side by side). If you could do a video of you walking then, that would be the cherry on top.

You're also not allowed to hang "it" or anything else up except jackets in the hallway.....THOSE YOU CAN HANG UP.....everything else stays ON your person for now.....we need a diagnosis young lady.....and that means your neurologist must have an appointment for you to do the EMG/NCV, right? Tell me when the date is that you're getting your tests done. And has this neurologist also done a good neurological examination on you yet? You know I've offered this to you before and I'll still do it some more...especially if you KEEP IGNORING me! .....The weather is much NICER IN XXXXXXX now than in XXXXXXX ...I'm sure...get yourself a cheap plane ticket...come and visit family and at the same time we'll get all this straightened out....we have some of the most prolific experts in the world here and we can process all the tests that need to be done in a matter of a few days....so what's holding you back?

It can't be money....you're spending it all here! HA!

So your last question of how to arrive here and maintain sanity? Well, you're doing it....you're being a bit melodramatic (and I know you'll chide me for saying that because I'm the one that's typing away at 90 wpm with 10 fingers)....but hey, you're not such a bad typist yourself!

Listen, if you get a chance tonight....you've got to step outside and look up in the sky.....The PLEIDES METEOR shower finishes tonight and though the weather in XXXXXXX is much better than where you're at....YOUR SKIES are probably CRYSTAL CLEAR as if you were looking through the Hubble Space Telescope out there in the desert! Wow....what a nighttime sky you guys must have.....so take a look up and you'll see TONS AND TONS of shooting stars.....take your pick and make a wish...make a couple of wishes....can you throw in a wish for me to suddenly find all the college tuition money I need to find for my kids who need it by next week?????

There...I answered all the questions......

BTW--- speaking of which....this is FINAL question of this thread.....You'll need to reopen the line if you'd like with a new question....but ONLY if you think this is helpful to you! You could always wait until the neurologist does his thing and you get your FORMAL AND ACCURATE PROFESSIONAL DIAGNOSES....before recontacting me....but if in the mean time you want to answer MY QUESTIONS, send me the pictures I'm asking for, and let me know when you'll be landing in XXXXXXX ...then, write to me at:

bit.ly/drdariushsaghafi


and then, I'll check back later.....hang in there kiddo....everyone's rooting for you....CIAO XXXX

AND BY THE WAY, I AM VERY APPRECIATIVE OF YOUR POSITIVE AND UPLIFTING COMMENTS....I hope you're being serious and not just nice! LOL! You realize that I'm not well versed in having to battle so long and hard about things....so you are stretching me for sure....THANK YOU.....

The query thusfar has required a total of 110 minutes of physician specific time to read, research, and compile a return envoy to the patient.
Above answer was peer-reviewed by : Dr. Chakravarthy Mazumdar
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Answered by
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Dr. Dariush Saghafi

Neurologist

Practicing since :1988

Answered : 2473 Questions

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Is Antibiotic Therapy Advisable For MND?

Brief Answer: Okee Dokee Young Lady...here we go-- Detailed Answer: Did you visit the neurologist today? What was the conclusion after examining you? Did you get the EMG? Antibiotic therapy for MND? Well, it all depends on if there's an infectious source that is causing the motor dysfunction. If you've tested negative for Lyme then, I'm not sure what the impetus would be to try antibiotic therapy since the reason it is thought to work would be on the supposition that the Lyme disease would be responsible for causing the motor neuron dysfunction. HOWEVER, and you will hear me repeat this over and over until either YOU or I go BLUE in the face....you do not have a diagnosis and I would like to politely and professionally insist that you not presume over your neurologist or neuropsychiatrist who have seen you and have yet to make any determination as to what you do have....the fact is I understand that there is history of sorts pointing to some type of condition or syndrome involving muscle weakness, atrophy (per your report; I've asked for some photographs but you've not sent any) so all of that is understood. Still the diagnostic possibilities for any doctor worth his salt are wide and things need to be narrowed down and excluded according to facts. Once they diagnose it formally then, let's open up the floor to discussions having to with the possibilities of this, that, or the other? How's that sound? And then, I'll tell you the story of Dr. Brown which I think should impress you NO MATTER WHAT THE DIAGNOSIS turns out to be. How do people handle bad news? Well, just like anything in life...there are some who seemingly handle it well and take things one step at a time and others who not so well. I believe that when news is HEAVY and burdensome, no matter of which persuasion you happen to be...it's always a terrific idea to have a professional counselor to be able to talk to....so in the same spirit I think it would be great if you had someone to be able to use as an outlet....I'm happy to offer myself but as you can see....I'm not much of a professional counselor...my bedside manner is likely not what a teacher of the subject would consider so patient or caring...but I sense that you like "rough around the edges...." at least a little bit...and I can certainly be that! LOL.....At the same time, I try and convince you and all of my patients (especially when thinking of someone such as Dr. Brown) that no matter what your diagnosis and no matter how many feet you have that may not work or be dysautonomic....that you are much more valuable to the human race as a fighter than as a succumber. You've come from Italian Stock...where from may I ask? Sicily (had a young lady in college who I knew from Sicily and she was very nice when wanting to be nice and when I pushed her buttons...she was absolutely HELL on wheels....) So, I would encourage you to channel all that type of energy against whatever is trying to make life more difficult for your BODY....your mind is quite fully intact and racing a mile a minute.....I would ask that you take that great flow of ideas that you have which are negative though and turn them around into positives. Can you become for example a repository of ideas for people who may have the same physical difficulties you're having and can you come up with ways to WALK THE DOG, DO GARDENING, I dunno....anything else that you were saying you can no longer do....I would challenge you to think and create ways to do those things....just like a person who is born without arms or without legs and who can still dress themselves, who can still do household chores....and who can even HAVE CHILDREN AND RAISE THEM in a normal environment. These people exist and need to get much more attention since they are so awe inspiring to watch and listen to....THAT'S what XXXX can become.....we need your ideas, your thoughts as to how you're living with these less than optimal circumstances of a physical nature....and how to turn those into a positive. 15 seconds left to answer this question.......Write back XXXX XXXXXXX (which means Beautiful in Spanish)! LOL......