Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Marsha, Dr lin is very knowledgeable with PLS he has seen several patience's over the years. He is keeps up with everything in his field and like I said he knows how to read clinical tests and doesn't like to rely on someone else interruptions of them.. I really don't know if he has any HSP I never asked him on that area. I know that HSP can just appear without any family history. I don't think you do if I recall . If you feel better going to Shands by all means go but first I'd find out whatever doctor you see that he is familiar with PLS and HSP in either case. lin will try to make the best decision he is capable of making on seeing you the first time. I believe a doctor must see you progress in order to make a good diagnoses along with the testing. He may schedule a EMG unless you've done that he does them himself along with a tech, he can read them as they do it. If you decide to see lin write down your questions if you're like me I forget when I'm in there. He's very open and easy to speak to he's a bit nerdy but I think that's good and if he talks above your head just stop him and ask him to come down a tad so you can understand. He can get carried away when talking all about this medical gogglie goob. Marsha remember he can only give his good guess on the information he gets and see you. I know he will take out his hammer, tap your knees and arms its doctor procedures he has to see it with his own eyes.................Hope you can see him..................Flora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Flora, as usual, gave you good advice. Most of us have been in the same situation -- the waiting game and most tests coming back " normal " . Yep, something is wrong, but I don't what is what I heard for about 4 years. I didn't know at the time, they were waiting to rule out ALS. At one of the Connections that I attended (can't remember where since I've been to so many), the speaker said his best advice, if in doubt, was to go to an ALS Center. G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Hey there Marsha, glad you don't have MS, but you do have something for sure and it appears that it is important to know exactly what at this point. i was first referred to USF folks who are the supposed experts in figuring out all that is neurological and when they failed, they sent me to dr franklin. what i looked like when he first saw me as far as a dx was not what developed over the course of a year or really 6 mo later. i know it is a bit far for you but i do think that if you give him some time---6mo to a year---depending on how fast you are progressing (remember i was moving faster than fast). i went in with a friend who was familiar with my list of things and my history of progression as she watched a good bit of it for the first visit. remember i thought i was going to get better at any time and shared that with dr franklin. he looked at my friend, then back at me, and said you realize you've been tested for those things and don't have them and get ready cause this ain't going anywhere, whatever it is. we tried to get genetic testing initially cause he thought one of the ataxias, but almost by the next time he saw me, he had ruled that out in his head and was looking more at PLS because the rest of my symptoms didn't fit with other MDA ataxia groups. i already had arms/hand stuff when i got there so maybe that ruled out HSP? dunno, but he saw me after my work insurance stopped and i had county insurance and now medicaid when he doesn't generally do that. i became intriguing to him and he was on a mission to figure it out. he does love to do his own EMG's and he and ron are quite a pair. dr franklin is a great patient advocate as well which is nice to have in a neurologist too. after i got my records from the first 2 visits, i went in armed for bear....of course he has to add this and rule this out (psychosomatic). went in after memorizing the dx criteria for the disorder (i am a psychologist) and opened the discussion about the disorder and that i saw he was still ruling that out. he said yes and then i let him have it in what i was proud to say was not ugly. let him know that there has to be something i gain by having the disorder and reminded him (got teary...ok weapy) i am losing my entire life as i have built it to this point and assured him there was no personal gain occurring. and by the way, i would be happy to have my therapist write you a note about how she feels about my functioning and such in spite of losing my life as i go! so that was that and we moved on to what all he was considering now and went thru the rest of my list. he and i have had good and bad moments and that is ok with me----other docs have issue with a friend coming in, coming in with lists, challenging things, etc. dr franklin takes you as you come for the most part. he knows i will have a list if things have been happening. most he can do nothing for at this point, as i have said until i can get the pump. i just tell him so he knows about whatever it is. he will be happy when i see him this month cause i will have just finished my 6th water PT session the day before! dr franklin sees MDA patients and knows the intricate differences of all of them plus more----he is mr neurology-----bigger nerd than eva!!! i would recommend him to everyone and anyone i know for anything neurological cause i think he is THE MAN!! i only have a love seat to offer but you are welcome to stay over if you need to do that while you are here. i feel that he is worth the drive and sees more of patients with these types of disorders on such a routine basis that he knows more than most even at specialty hospitals and apparently university's that are known for what they know!!! Tawny marfla04 marfla04@...> wrote: Hi I saw my neuro this morning. The MRI showed no lesions and actually showed nothing. Therefore MS definitely ruled out. My Neuro still believes its HSP but since he doesn't specialize in HSP he wants me to see someone that does. Or someone that at least as more knowledge in this area. I suggested Dr lin and he said find. Or I could go to Gainesville. And that he could work with him, by seeing me here on regular basis and then maybe if Dr franklin takes me on as a patient see him as needed. My neuro also said that if Dr lin ordered tests he would work on getting those done here locally, unless Dr F prefers over there. At least he is willing to work with another neuro, and wanting me to see someone with more experience in HSP/PLS. I called Dr F which instructed me to have my neuro fax a referral script with dx. Then I can make the appointment. Also before appt to have all test results, notes, etc... faxed to his office. Does this sound like a positive thing? Am I setting myself up for just another disappointment? Any advice for me if I do get in to see Dr F? Any advice from anyone on anything regarding seeing new neuro with speculation of having HSP and/or PLS? Nervous about this as seems when I see a new neuro only to once again hear, don't know, tests are normal, etc...... So please any thoughts, advice, guidance from anyone would be appreciated. Thanks marfla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 and another thing....still ruling out ALS for me and i am comfortable that he is looking for those signs vigilantly each visit and each EMG----even the emg's he does to give botox injections. tawny marfla04 marfla04@...> wrote: Hi I saw my neuro this morning. The MRI showed no lesions and actually showed nothing. Therefore MS definitely ruled out. My Neuro still believes its HSP but since he doesn't specialize in HSP he wants me to see someone that does. Or someone that at least as more knowledge in this area. I suggested Dr lin and he said find. Or I could go to Gainesville. And that he could work with him, by seeing me here on regular basis and then maybe if Dr franklin takes me on as a patient see him as needed. My neuro also said that if Dr lin ordered tests he would work on getting those done here locally, unless Dr F prefers over there. At least he is willing to work with another neuro, and wanting me to see someone with more experience in HSP/PLS. I called Dr F which instructed me to have my neuro fax a referral script with dx. Then I can make the appointment. Also before appt to have all test results, notes, etc... faxed to his office. Does this sound like a positive thing? Am I setting myself up for just another disappointment? Any advice for me if I do get in to see Dr F? Any advice from anyone on anything regarding seeing new neuro with speculation of having HSP and/or PLS? Nervous about this as seems when I see a new neuro only to once again hear, don't know, tests are normal, etc...... So please any thoughts, advice, guidance from anyone would be appreciated. Thanks marfla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Marfla, My big mistake was never previously asking how a neurologist defines PLS and HSP. If he diagnoses PLS, is he focussing on the fact that it is sporadic? If symptoms stay in the legs forever, is he still going to call it PLS? Or does he think PLS always eventually affect the arms, hands and speech? If he calls it HSP, is it because the symptoms match those of uncomplicated HSP? Is he making this d(X) even though you have no family history? Mark --- marfla04 marfla04@...> wrote: > Hi > I saw my neuro this morning. The MRI showed no > lesions and actually > showed nothing. Therefore MS definitely ruled out. > > My Neuro still believes its HSP but since he doesn't > specialize in > HSP he wants me to see someone that does. Or someone > that at least as > more knowledge in this area. > > I suggested Dr lin and he said find. Or I could > go to > Gainesville. And that he could work with him, by > seeing me here on > regular basis and then maybe if Dr franklin takes me > on as a patient > see him as needed. My neuro also said that if Dr > lin ordered > tests he would work on getting those done here > locally, unless Dr F > prefers over there. At least he is willing to work > with another > neuro, and wanting me to see someone with more > experience in HSP/PLS. > > I called Dr F which instructed me to have my neuro > fax a referral > script with dx. Then I can make the appointment. > Also before appt to > have all test results, notes, etc... faxed to his > office. > > Does this sound like a positive thing? Am I setting > myself up for > just another disappointment? > > Any advice for me if I do get in to see Dr F? > > Any advice from anyone on anything regarding seeing > new neuro with > speculation of having HSP and/or PLS? > > Nervous about this as seems when I see a new neuro > only to once again > hear, don't know, tests are normal, etc...... > > So please any thoughts, advice, guidance from anyone > would be > appreciated. > > Thanks > marfla > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Thanks Flora I really don't want to go to Shands. I am sure they have some great neuro's there but from personal experience I haven't found teaching hospitals/clinics very helpful. I have every MRI film taken in 2004 and the ones just completed recently. Plus the radiologists reports. I have every report/office notes when being seen by my rheumatolgist that worked so hard to find answers. I have a summary from her (one page) that describes what she saw, signs/symptoms, and her impressions. I don't expect to see him once and boom a diagnosis is confirmed. But if he and my neuro here would worked together maybe something could be confirmed sooner than later. I haven't had an EMG. I did have an EEG, Visual and Auditory Evoked Potentials. No one has suggested EMG. I have to see my primary before she can request an authorization for referral from insurance. Just love this system HMO's. The neuro is writing the order for referral to send to Dr lin, yet my primary can't request autho for referral without seeing me herself to justify the referral. grrrr. I am planning on seeing Dr F he agrees once receiving the referral script/order from my neuro. Who knows he may say no. The process has started in going, i.e. working on scheduling appt with primary, neuro sending referral/diagnosis script. Once receive referral authorization from insurance (of course they could deny this too), then make the appt. then fax to his office notes, test results, etc..... So time will tell i guess. Thanks for your input, thoughts and advice. marfla Be Blessed Re: Flora/Tawny, Neuro > Marsha, Dr lin is very knowledgeable with PLS he has seen several > patience's over the years. He is keeps up with everything in his field > and like > I said he knows how to read clinical tests and doesn't like to rely on > someone else interruptions of them.. I really don't know if he has any > HSP I > never asked him on that area. I know that HSP can just appear without > any > family history. I don't think you do if I recall . If you feel better > going to > Shands by all means go but first I'd find out whatever doctor you see > that he > is familiar with PLS and HSP in either case. lin will try to make > the > best decision he is capable of making on seeing you the first time. I > believe > a doctor must see you progress in order to make a good diagnoses along > with > the testing. He may schedule a EMG unless you've done that he does them > himself along with a tech, he can read them as they do it. > > If you decide to see lin write down your questions if you're like me > I > forget when I'm in there. He's very open and easy to speak to he's a bit > nerdy but I think that's good and if he talks above your head just stop > him and > ask him to come down a tad so you can understand. He can get carried away > when talking all about this medical gogglie goob. > > Marsha remember he can only give his good guess on the information he gets > and see you. I know he will take out his hammer, tap your knees and arms > its > doctor procedures he has to see it with his own eyes.................Hope > you > can see him..................Flora > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Thanks Tawny, Today when talking about not having MS, him still believing its HSP, and that all my MRI's, labs are normal, I got teary eyed when sharing with him I am unable to do the things I once enjoyed and loved i.e. hiking trails, walking on beach, being on the go constantly, and how bad the fatigue gets that I think is in part of the amount of energy it takes to do anything. I am pleased that this neuro although said he believes its HSP stated he isn't an expert and wants another opinion. It isn't that far from really. I can probably even plan to be in that area for work, and have appt in the same week. So traveling over isn't a problem. Actually I am to the point i will travel anywhere I have to, if someone can give me some answers. I would love someone to say its something that will turn around, and I can get back to doing things I love wihthout the difficulty, extra energy it takes, and even some things that I just can't do anymore at all. I understand doctors having to rule out psychosomatic/conversion disorders. I too have nothing to gain, actually I am losing more than gaining. I have a summary from my rheumatologists stating signs/symptoms she has observed, her impressions and even states that this isn't related to emotional/mental/conversion etc... Hopefully that will aid in not having to repeat ruling out conversion/psychosomatic. Plus my neuro hasn't mentioned anything about this being psychological. My therapist in 2004 wrote a note to my rheumatologists stating that I tend to play down, minimize my symptoms, and complaints. If I need something from her for Dr franklin, I have no problem getting that. I also had neuropsych testing in 2004 which in report states I am not the personality type for malingering, or seeking secondary gain, etc..... In that report he notes the defiencies I was having at the time. He did identify General Anxiety disorder due to Chronic Medical Illness. which of course makes sense to me. I went from walking nonstop, with no aid in Jan 2004 to needing a cane for long distances around Feb/Mar, by July needing a cane at all times, then by Sept needing forearm crutches all the time. Thankfully now for short distances I can get by with just one forearm crutch. But now for long like hours or all day walking I must use a scooter. I always have list of things. It's my nature, and part of my career to have lists, writing reports etc.... So I have kept a journal of symptoms which most neuro's don't want to see. I write questions down, thoughts etc.... because I know I will forget once in appt. I appreciate the offer to stay over, but I can probably work it out to have the appt and be over there to do some work at our program in the area. like I mentioned to Flora, I am to point willing to travel about anywhere for answers. I have started the process needed to actual even make the appt. Of course this will take time. It probably would be even better if not seeing him until the heat of summer since this is when I tend to have more problems than ever. So that may be a good thing if appt isn't until June-Aug. Time will tell. Thanks for your input, thoughts, and advice. marfla Be Blessed Re: Flora/Tawny, Neuro > Hey there Marsha, > glad you don't have MS, but you do have something for sure and it appears > that it is important to know exactly what at this point. i was first > referred to USF folks who are the supposed experts in figuring out all > that is neurological and when they failed, they sent me to dr franklin. > what i looked like when he first saw me as far as a dx was not what > developed over the course of a year or really 6 mo later. i know it is a > bit far for you but i do think that if you give him some time---6mo to a > year---depending on how fast you are progressing (remember i was moving > faster than fast). i went in with a friend who was familiar with my list > of things and my history of progression as she watched a good bit of it > for the first visit. remember i thought i was going to get better at any > time and shared that with dr franklin. he looked at my friend, then back > at me, and said you realize you've been tested for those things and don't > have them and get ready cause this ain't > going anywhere, whatever it is. > > we tried to get genetic testing initially cause he thought one of the > ataxias, but almost by the next time he saw me, he had ruled that out in > his head and was looking more at PLS because the rest of my symptoms > didn't fit with other MDA ataxia groups. i already had arms/hand stuff > when i got there so maybe that ruled out HSP? dunno, but he saw me after > my work insurance stopped and i had county insurance and now medicaid when > he doesn't generally do that. i became intriguing to him and he was on a > mission to figure it out. > > he does love to do his own EMG's and he and ron are quite a pair. dr > franklin is a great patient advocate as well which is nice to have in a > neurologist too. after i got my records from the first 2 visits, i went > in armed for bear....of course he has to add this and rule this out > (psychosomatic). went in after memorizing the dx criteria for the > disorder (i am a psychologist) and opened the discussion about the > disorder and that i saw he was still ruling that out. he said yes and > then i let him have it in what i was proud to say was not ugly. let him > know that there has to be something i gain by having the disorder and > reminded him (got teary...ok weapy) i am losing my entire life as i have > built it to this point and assured him there was no personal gain > occurring. and by the way, i would be happy to have my therapist write > you a note about how she feels about my functioning and such in spite of > losing my life as i go! so that was that and we moved on to what all > he was considering now and went thru the rest of my list. > > he and i have had good and bad moments and that is ok with me----other > docs have issue with a friend coming in, coming in with lists, challenging > things, etc. dr franklin takes you as you come for the most part. he > knows i will have a list if things have been happening. most he can do > nothing for at this point, as i have said until i can get the pump. i > just tell him so he knows about whatever it is. he will be happy when i > see him this month cause i will have just finished my 6th water PT session > the day before! > > dr franklin sees MDA patients and knows the intricate differences of all > of them plus more----he is mr neurology-----bigger nerd than eva!!! i > would recommend him to everyone and anyone i know for anything > neurological cause i think he is THE MAN!! > i only have a love seat to offer but you are welcome to stay over if you > need to do that while you are here. i feel that he is worth the drive and > sees more of patients with these types of disorders on such a routine > basis that he knows more than most even at specialty hospitals and > apparently university's that are known for what they know!!! > > Tawny > > marfla04 marfla04@...> wrote: > Hi > I saw my neuro this morning. The MRI showed no lesions and actually > showed nothing. Therefore MS definitely ruled out. > > My Neuro still believes its HSP but since he doesn't specialize in > HSP he wants me to see someone that does. Or someone that at least as > more knowledge in this area. > > I suggested Dr lin and he said find. Or I could go to > Gainesville. And that he could work with him, by seeing me here on > regular basis and then maybe if Dr franklin takes me on as a patient > see him as needed. My neuro also said that if Dr lin ordered > tests he would work on getting those done here locally, unless Dr F > prefers over there. At least he is willing to work with another > neuro, and wanting me to see someone with more experience in HSP/PLS. > > I called Dr F which instructed me to have my neuro fax a referral > script with dx. Then I can make the appointment. Also before appt to > have all test results, notes, etc... faxed to his office. > > Does this sound like a positive thing? Am I setting myself up for > just another disappointment? > > Any advice for me if I do get in to see Dr F? > > Any advice from anyone on anything regarding seeing new neuro with > speculation of having HSP and/or PLS? > > Nervous about this as seems when I see a new neuro only to once again > hear, don't know, tests are normal, etc...... > > So please any thoughts, advice, guidance from anyone would be > appreciated. > > Thanks > marfla > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2006 Report Share Posted April 7, 2006 Thanks. Mark. I mentioned to my neuro today about sporadic SP. I even had printed out the info from SP foundation site on HSP and PLS. Highlighted what I thought related to me. He actually reviewed both print outs. So if understanding you, its good point to understand clearly when neuro is making a dx of HSP or PLS the base of that decision? I will keep your questions as they may come in handy at some point in this process. Thanks marfla Be Blessed Re: Flora/Tawny, Neuro > Marfla, > > My big mistake was never previously asking how a > neurologist defines PLS and HSP. If he diagnoses PLS, > is he focussing on the fact that it is sporadic? If > symptoms stay in the legs forever, is he still going > to call it PLS? Or does he think PLS always > eventually affect the arms, hands and speech? > > If he calls it HSP, is it because the symptoms match > those of uncomplicated HSP? Is he making this d(X) > even though you have no family history? > > Mark > > > > --- marfla04 marfla04@...> wrote: > >> Hi >> I saw my neuro this morning. The MRI showed no >> lesions and actually >> showed nothing. Therefore MS definitely ruled out. >> >> My Neuro still believes its HSP but since he doesn't >> specialize in >> HSP he wants me to see someone that does. Or someone >> that at least as >> more knowledge in this area. >> >> I suggested Dr lin and he said find. Or I could >> go to >> Gainesville. And that he could work with him, by >> seeing me here on >> regular basis and then maybe if Dr franklin takes me >> on as a patient >> see him as needed. My neuro also said that if Dr >> lin ordered >> tests he would work on getting those done here >> locally, unless Dr F >> prefers over there. At least he is willing to work >> with another >> neuro, and wanting me to see someone with more >> experience in HSP/PLS. >> >> I called Dr F which instructed me to have my neuro >> fax a referral >> script with dx. Then I can make the appointment. >> Also before appt to >> have all test results, notes, etc... faxed to his >> office. >> >> Does this sound like a positive thing? Am I setting >> myself up for >> just another disappointment? >> >> Any advice for me if I do get in to see Dr F? >> >> Any advice from anyone on anything regarding seeing >> new neuro with >> speculation of having HSP and/or PLS? >> >> Nervous about this as seems when I see a new neuro >> only to once again >> hear, don't know, tests are normal, etc...... >> >> So please any thoughts, advice, guidance from anyone >> would be >> appreciated. >> >> Thanks >> marfla >> >> >> >> >> >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 Hey there Marsha, I am glad the work is in progress and since no one you have seen so far has recommended an EMG, I even more hope you get to see franklin. all my labs are always normal, my 4th MRI just shows a small lesion in brain stem area and a venous angioma (?) around the same area....because they are so small they don't mean much in the larger scheme of things. my point is that my things have been normal except for the actual symptoms. he never made me get psychological or anything like that although i offerred it up. sounds like you and flora and i had similar life styles and personality types prior to our onsets. using those obsessive compulsive tendencies in your favor with your journal, between now and your appt., type up a month by month since onset with significant functioning losses (similar to what you just did with me) up to time you see him. I did that and gave to him to keep for my file....of course he wanted to hear it from me rather than read it on first visit. sadly i was over on the table and my list was over on his little desk table so i had to go by memory with my friend's help!! i have prior hx of depression---well really dysthymia with intermittant major depressive episodes----and the anxiety i probably had but struggled so much with while my world crumbled. i also have hx of eating disorders that i down played as much as i could givingmedical history! in the mean time (my friend with MS was my energy conservation coach) test out more different (am sure you have) ways to arrange schedule and time and activities and priorities both with work and home life stuff to try to conserve some energy for a bit of something fun or relaxing for you. that was hardest for me cause my stress reducers were always physical and i had to find something i could do sitting still....piddling is how i realized i had a bit of talent for painting. anyway try to take good care of you, eat as well as you can, sleep as well as you can....the basic things. ok, enough babble....have the best day you can! tawny Marfla marfla04@...> wrote: Thanks Tawny, Today when talking about not having MS, him still believing its HSP, and that all my MRI's, labs are normal, I got teary eyed when sharing with him I am unable to do the things I once enjoyed and loved i.e. hiking trails, walking on beach, being on the go constantly, and how bad the fatigue gets that I think is in part of the amount of energy it takes to do anything. I am pleased that this neuro although said he believes its HSP stated he isn't an expert and wants another opinion. It isn't that far from really. I can probably even plan to be in that area for work, and have appt in the same week. So traveling over isn't a problem. Actually I am to the point i will travel anywhere I have to, if someone can give me some answers. I would love someone to say its something that will turn around, and I can get back to doing things I love wihthout the difficulty, extra energy it takes, and even some things that I just can't do anymore at all. I understand doctors having to rule out psychosomatic/conversion disorders. I too have nothing to gain, actually I am losing more than gaining. I have a summary from my rheumatologists stating signs/symptoms she has observed, her impressions and even states that this isn't related to emotional/mental/conversion etc... Hopefully that will aid in not having to repeat ruling out conversion/psychosomatic. Plus my neuro hasn't mentioned anything about this being psychological. My therapist in 2004 wrote a note to my rheumatologists stating that I tend to play down, minimize my symptoms, and complaints. If I need something from her for Dr franklin, I have no problem getting that. I also had neuropsych testing in 2004 which in report states I am not the personality type for malingering, or seeking secondary gain, etc..... In that report he notes the defiencies I was having at the time. He did identify General Anxiety disorder due to Chronic Medical Illness. which of course makes sense to me. I went from walking nonstop, with no aid in Jan 2004 to needing a cane for long distances around Feb/Mar, by July needing a cane at all times, then by Sept needing forearm crutches all the time. Thankfully now for short distances I can get by with just one forearm crutch. But now for long like hours or all day walking I must use a scooter. I always have list of things. It's my nature, and part of my career to have lists, writing reports etc.... So I have kept a journal of symptoms which most neuro's don't want to see. I write questions down, thoughts etc.... because I know I will forget once in appt. I appreciate the offer to stay over, but I can probably work it out to have the appt and be over there to do some work at our program in the area. like I mentioned to Flora, I am to point willing to travel about anywhere for answers. I have started the process needed to actual even make the appt. Of course this will take time. It probably would be even better if not seeing him until the heat of summer since this is when I tend to have more problems than ever. So that may be a good thing if appt isn't until June-Aug. Time will tell. Thanks for your input, thoughts, and advice. marfla Be Blessed Re: Flora/Tawny, Neuro > Hey there Marsha, > glad you don't have MS, but you do have something for sure and it appears > that it is important to know exactly what at this point. i was first > referred to USF folks who are the supposed experts in figuring out all > that is neurological and when they failed, they sent me to dr franklin. > what i looked like when he first saw me as far as a dx was not what > developed over the course of a year or really 6 mo later. i know it is a > bit far for you but i do think that if you give him some time---6mo to a > year---depending on how fast you are progressing (remember i was moving > faster than fast). i went in with a friend who was familiar with my list > of things and my history of progression as she watched a good bit of it > for the first visit. remember i thought i was going to get better at any > time and shared that with dr franklin. he looked at my friend, then back > at me, and said you realize you've been tested for those things and don't > have them and get ready cause this ain't > going anywhere, whatever it is. > > we tried to get genetic testing initially cause he thought one of the > ataxias, but almost by the next time he saw me, he had ruled that out in > his head and was looking more at PLS because the rest of my symptoms > didn't fit with other MDA ataxia groups. i already had arms/hand stuff > when i got there so maybe that ruled out HSP? dunno, but he saw me after > my work insurance stopped and i had county insurance and now medicaid when > he doesn't generally do that. i became intriguing to him and he was on a > mission to figure it out. > > he does love to do his own EMG's and he and ron are quite a pair. dr > franklin is a great patient advocate as well which is nice to have in a > neurologist too. after i got my records from the first 2 visits, i went > in armed for bear....of course he has to add this and rule this out > (psychosomatic). went in after memorizing the dx criteria for the > disorder (i am a psychologist) and opened the discussion about the > disorder and that i saw he was still ruling that out. he said yes and > then i let him have it in what i was proud to say was not ugly. let him > know that there has to be something i gain by having the disorder and > reminded him (got teary...ok weapy) i am losing my entire life as i have > built it to this point and assured him there was no personal gain > occurring. and by the way, i would be happy to have my therapist write > you a note about how she feels about my functioning and such in spite of > losing my life as i go! so that was that and we moved on to what all > he was considering now and went thru the rest of my list. > > he and i have had good and bad moments and that is ok with me----other > docs have issue with a friend coming in, coming in with lists, challenging > things, etc. dr franklin takes you as you come for the most part. he > knows i will have a list if things have been happening. most he can do > nothing for at this point, as i have said until i can get the pump. i > just tell him so he knows about whatever it is. he will be happy when i > see him this month cause i will have just finished my 6th water PT session > the day before! > > dr franklin sees MDA patients and knows the intricate differences of all > of them plus more----he is mr neurology-----bigger nerd than eva!!! i > would recommend him to everyone and anyone i know for anything > neurological cause i think he is THE MAN!! > i only have a love seat to offer but you are welcome to stay over if you > need to do that while you are here. i feel that he is worth the drive and > sees more of patients with these types of disorders on such a routine > basis that he knows more than most even at specialty hospitals and > apparently university's that are known for what they know!!! > > Tawny > > marfla04 marfla04@...> wrote: > Hi > I saw my neuro this morning. The MRI showed no lesions and actually > showed nothing. Therefore MS definitely ruled out. > > My Neuro still believes its HSP but since he doesn't specialize in > HSP he wants me to see someone that does. Or someone that at least as > more knowledge in this area. > > I suggested Dr lin and he said find. Or I could go to > Gainesville. And that he could work with him, by seeing me here on > regular basis and then maybe if Dr franklin takes me on as a patient > see him as needed. My neuro also said that if Dr lin ordered > tests he would work on getting those done here locally, unless Dr F > prefers over there. At least he is willing to work with another > neuro, and wanting me to see someone with more experience in HSP/PLS. > > I called Dr F which instructed me to have my neuro fax a referral > script with dx. Then I can make the appointment. Also before appt to > have all test results, notes, etc... faxed to his office. > > Does this sound like a positive thing? Am I setting myself up for > just another disappointment? > > Any advice for me if I do get in to see Dr F? > > Any advice from anyone on anything regarding seeing new neuro with > speculation of having HSP and/or PLS? > > Nervous about this as seems when I see a new neuro only to once again > hear, don't know, tests are normal, etc...... > > So please any thoughts, advice, guidance from anyone would be > appreciated. > > Thanks > marfla > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2006 Report Share Posted April 8, 2006 thanks tawny, will let you know if this gets approved, if he agrees to see me, and if gets scheduled. marfla Be Blessed Re: Flora/Tawny, Neuro > > >> Hey there Marsha, >> glad you don't have MS, but you do have something for sure and it >> appears >> that it is important to know exactly what at this point. i was first >> referred to USF folks who are the supposed experts in figuring out all >> that is neurological and when they failed, they sent me to dr franklin. >> what i looked like when he first saw me as far as a dx was not what >> developed over the course of a year or really 6 mo later. i know it is a >> bit far for you but i do think that if you give him some time---6mo to a >> year---depending on how fast you are progressing (remember i was moving >> faster than fast). i went in with a friend who was familiar with my list >> of things and my history of progression as she watched a good bit of it >> for the first visit. remember i thought i was going to get better at any >> time and shared that with dr franklin. he looked at my friend, then back >> at me, and said you realize you've been tested for those things and don't >> have them and get ready cause this ain't >> going anywhere, whatever it is. >> >> we tried to get genetic testing initially cause he thought one of the >> ataxias, but almost by the next time he saw me, he had ruled that out in >> his head and was looking more at PLS because the rest of my symptoms >> didn't fit with other MDA ataxia groups. i already had arms/hand stuff >> when i got there so maybe that ruled out HSP? dunno, but he saw me after >> my work insurance stopped and i had county insurance and now medicaid >> when >> he doesn't generally do that. i became intriguing to him and he was on a >> mission to figure it out. >> >> he does love to do his own EMG's and he and ron are quite a pair. dr >> franklin is a great patient advocate as well which is nice to have in a >> neurologist too. after i got my records from the first 2 visits, i went >> in armed for bear....of course he has to add this and rule this out >> (psychosomatic). went in after memorizing the dx criteria for the >> disorder (i am a psychologist) and opened the discussion about the >> disorder and that i saw he was still ruling that out. he said yes and >> then i let him have it in what i was proud to say was not ugly. let him >> know that there has to be something i gain by having the disorder and >> reminded him (got teary...ok weapy) i am losing my entire life as i have >> built it to this point and assured him there was no personal gain >> occurring. and by the way, i would be happy to have my therapist write >> you a note about how she feels about my functioning and such in spite of >> losing my life as i go! so that was that and we moved on to what all >> he was considering now and went thru the rest of my list. >> >> he and i have had good and bad moments and that is ok with me----other >> docs have issue with a friend coming in, coming in with lists, >> challenging >> things, etc. dr franklin takes you as you come for the most part. he >> knows i will have a list if things have been happening. most he can do >> nothing for at this point, as i have said until i can get the pump. i >> just tell him so he knows about whatever it is. he will be happy when i >> see him this month cause i will have just finished my 6th water PT >> session >> the day before! >> >> dr franklin sees MDA patients and knows the intricate differences of all >> of them plus more----he is mr neurology-----bigger nerd than eva!!! i >> would recommend him to everyone and anyone i know for anything >> neurological cause i think he is THE MAN!! >> i only have a love seat to offer but you are welcome to stay over if you >> need to do that while you are here. i feel that he is worth the drive >> and >> sees more of patients with these types of disorders on such a routine >> basis that he knows more than most even at specialty hospitals and >> apparently university's that are known for what they know!!! >> >> Tawny >> >> marfla04 marfla04@...> wrote: >> Hi >> I saw my neuro this morning. The MRI showed no lesions and actually >> showed nothing. Therefore MS definitely ruled out. >> >> My Neuro still believes its HSP but since he doesn't specialize in >> HSP he wants me to see someone that does. Or someone that at least as >> more knowledge in this area. >> >> I suggested Dr lin and he said find. Or I could go to >> Gainesville. And that he could work with him, by seeing me here on >> regular basis and then maybe if Dr franklin takes me on as a patient >> see him as needed. My neuro also said that if Dr lin ordered >> tests he would work on getting those done here locally, unless Dr F >> prefers over there. At least he is willing to work with another >> neuro, and wanting me to see someone with more experience in HSP/PLS. >> >> I called Dr F which instructed me to have my neuro fax a referral >> script with dx. Then I can make the appointment. Also before appt to >> have all test results, notes, etc... faxed to his office. >> >> Does this sound like a positive thing? Am I setting myself up for >> just another disappointment? >> >> Any advice for me if I do get in to see Dr F? >> >> Any advice from anyone on anything regarding seeing new neuro with >> speculation of having HSP and/or PLS? >> >> Nervous about this as seems when I see a new neuro only to once again >> hear, don't know, tests are normal, etc...... >> >> So please any thoughts, advice, guidance from anyone would be >> appreciated. >> >> Thanks >> marfla >> >> >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
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