Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 I agree with the stuff about not knowing the tone of email. My tone is usually pretty clear, but sometimes, people get it wrong because I tend to just say what I'm thinking without bothering to pretty it all up. With email, you really need to take the time to pretty it up. There are actually doctors who don't believe in TCS??? I would like to discuss this a lot more! Like, what is it don't they believe? YAH! I can't begin to imagine going to a doc and having him tell me that an actual physical manifestation isn't real! --- A Gosp wrote: > Hi everyone > Here are my two boring sappy (is that the right > word?) cents on some of the emails going back and > forth... > It is very hard to convey the concepts, emphasis and > emotions that we attempt to communicate to each > other by email (without seeing someone's face). > Sometimes there are misunderstandings and part of it > is that tsc is a very misunderstood and emotional > topic for most of us. And then of course, each case > is so different depending on the levels involved, > function affected, etc...Having said that I want to > thank people for the wealth of information shared > and all the help everyone provides here. > > I wanted to share with you guys some recent > experiences in case they might be useful for you. > > 1) I contacted my neurologist and told her about the > surgery and progress so far. She was very nice and > interested and wants all the records to present my > case in her neurology conference. Although she > really wasn't able to help me and delayed my ability > to get help and a diagnosis, this helped me be less > angry and hopefully will at least keep this topic in > the back of the mind of a whole group of > neurologists so if they see someone with tsc they > might recognize it and that person could get a > diagnosis and treatment if indicated sooner. > > 2) I also sent a nice email response to the spine > rehab doctor (at a very well known institute that > doesn't " believe " in tsc), that had emailed me right > before surgery and was strongly opposed to the > diagnosis and plan of tsc surgery. I thanked him for > his response and told him that although tsc is very > controversial from being almost completely > incapacitated, I had gone through surgery and was > gradually improving. He was very professional about > it and also wants to discuss and present my case. > Hopefully the next person they see with tsc symptoms > they might " believe in tsc " . > > 3) For the last 3-4 wks I was getting a lot of foot > pain in the bottom of my feet when I first woke up > and tried to step, wearing shoes was becoming > torture, not wearing them too. I think this is from > plantar fasciitis, secondary to my rehab exercises, > maybe the tight calves or weak feet from tsc. Bottom > line, pattern of pain is different from the tsc leg > fatigue pain. For the last 2 weeks I've started > wearing shoes all day (I.e. no slippers) with arch > supports, added on foot and calf stretches, took > some anti-inflammatories and it's really helped. So > think about this for painful feet, especially if > they hurt a lot when you sit down for a while and > get up or first thing in the morning. I've used > www.foot.com<http://www.foot.com/> > www.footsmart.com<http://www.footsmart.com/> for > shoe inserts and stuff. It's a real challenge to > find shoes! > > 4) For , I don't know the rate of TFT > re-tethering. Maybe we can send that question to > some NSG out there > > ia > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Not entirely unusual I was believed straightaway re the TCS pain (in year 2000), but since at least 1988 my feet have swelled enormously - and it was only last year that I was diagnosed with erythromelalgia and Complex Regional Pain Syndrome - 17 years of being disbelieved and passed off as not worthy of investigating the cause. Now, 'cos it has been happening so long, the CRPS is chronic and there is no form of treatment that will be effective or long term. However I am dealing with it on a short-term basis by having acupuncture and trying to keep my body in good condition, so that the (VERY) bad days aren't so devastatingly bad as they used to be Why oh why do doctors not believe the people who have very real symptoms, and then made to feel a nuisance when we want to get better - grrrrr!!! Nina Bristol, UK, bathed in sunshine, blue sky and all the prettiness of springtime in the UK -- > I agree with the stuff about not knowing the tone of > email. My tone is usually pretty clear, but > sometimes, people get it wrong because I tend to just > say what I'm thinking without bothering to pretty it > all up. With email, you really need to take the time > to pretty it up. > > There are actually doctors who don't believe in TCS??? > I would like to discuss this a lot more! Like, what > is it don't they believe? > > YAH! I can't begin to imagine going to a doc and > having him tell me that an actual physical > manifestation isn't real! > > > > --- A Gosp wrote: > >> Hi everyone >> Here are my two boring sappy (is that the right >> word?) cents on some of the emails going back and >> forth... >> It is very hard to convey the concepts, emphasis and >> emotions that we attempt to communicate to each >> other by email (without seeing someone's face). >> Sometimes there are misunderstandings and part of it >> is that tsc is a very misunderstood and emotional >> topic for most of us. And then of course, each case >> is so different depending on the levels involved, >> function affected, etc...Having said that I want to >> thank people for the wealth of information shared >> and all the help everyone provides here. >> >> I wanted to share with you guys some recent >> experiences in case they might be useful for you. >> >> 1) I contacted my neurologist and told her about the >> surgery and progress so far. She was very nice and >> interested and wants all the records to present my >> case in her neurology conference. Although she >> really wasn't able to help me and delayed my ability >> to get help and a diagnosis, this helped me be less >> angry and hopefully will at least keep this topic in >> the back of the mind of a whole group of >> neurologists so if they see someone with tsc they >> might recognize it and that person could get a >> diagnosis and treatment if indicated sooner. >> >> 2) I also sent a nice email response to the spine >> rehab doctor (at a very well known institute that >> doesn't " believe " in tsc), that had emailed me right >> before surgery and was strongly opposed to the >> diagnosis and plan of tsc surgery. I thanked him for >> his response and told him that although tsc is very >> controversial from being almost completely >> incapacitated, I had gone through surgery and was >> gradually improving. He was very professional about >> it and also wants to discuss and present my case. >> Hopefully the next person they see with tsc symptoms >> they might " believe in tsc " . >> >> 3) For the last 3-4 wks I was getting a lot of foot >> pain in the bottom of my feet when I first woke up >> and tried to step, wearing shoes was becoming >> torture, not wearing them too. I think this is from >> plantar fasciitis, secondary to my rehab exercises, >> maybe the tight calves or weak feet from tsc. Bottom >> line, pattern of pain is different from the tsc leg >> fatigue pain. For the last 2 weeks I've started >> wearing shoes all day (I.e. no slippers) with arch >> supports, added on foot and calf stretches, took >> some anti-inflammatories and it's really helped. So >> think about this for painful feet, especially if >> they hurt a lot when you sit down for a while and >> get up or first thing in the morning. I've used >> www.foot.com<http://www.foot.com/> >> www.footsmart.com<http://www.footsmart.com/> for >> shoe inserts and stuff. It's a real challenge to >> find shoes! >> >> 4) For , I don't know the rate of TFT >> re-tethering. Maybe we can send that question to >> some NSG out there >> >> ia >> >> [Non-text portions of this message have been >> removed] >> >> > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Pain is a whole other matter! I had a doctor that I went to for a new symptom. He was my primary doc, one I inherited because my real PCP left the practice. He was this nervous little twit, I called him Doogie. Anyway, I went in for this new symptom to make sure it wasn't something that warranted more investigation. He walks in, looks at my chart and says " I'm not giving you pain medication. " Before he even talked to me! I have NEVER asked for pain meds. In fact, I have tried many, many meds for the pain that aren't pain meds because I don't want pain meds. I would prefer not to be on narcotic meds at this stage, especially knowing that it is most likely going to be lifelong, not if something else can help! For me, the big guns are last resort. So essentially I informed him that I didn't want pain meds, and had he bothered to check my chart he would see all the places my other doc marked where I turned down pain meds (dozens of times), and all I wanted was to know if this new symptom needed to be looked into. I got up and left, and promptly switched doctors. I was SO pissed. I know pain has always been seen as suspect. Migraines, for years, were thought to be some type of hysteria. But TCS is not pain, hidden in the patient's mind, it's intensity open to interpretation. It's a physical entity. You can't really do tests for pain (well, there are tests, but I don't put much stock in their reliability), but you can do an MRI and see the elongated nerve roots, see the tether. You can do EEGs and prove the nerve path is goofed up. How can anyone deny that something exists that you can prove? Baffles me. --- " AB Bunton, Electrical & Electronic Engineering " wrote: > Not entirely unusual > > I was believed straightaway re the TCS pain (in year > 2000), but since at > least 1988 my feet have swelled enormously - and it > was only last year that > I was diagnosed with erythromelalgia and Complex > Regional Pain Syndrome - > 17 years of being disbelieved and passed off as not > worthy of investigating > the cause. > > Now, 'cos it has been happening so long, the CRPS is > chronic and there is > no form of treatment that will be effective or long > term. However I am > dealing with it on a short-term basis by having > acupuncture and trying to > keep my body in good condition, so that the (VERY) > bad days aren't so > devastatingly bad as they used to be > > Why oh why do doctors not believe the people who > have very real symptoms, > and then made to feel a nuisance when we want to get > better - grrrrr!!! > > Nina > Bristol, UK, bathed in sunshine, blue sky and all > the prettiness of > springtime in the UK > > > --On 11 May 2006 04:26 -0700 Weaver > wrote: > > > I agree with the stuff about not knowing the tone > of > > email. My tone is usually pretty clear, but > > sometimes, people get it wrong because I tend to > just > > say what I'm thinking without bothering to pretty > it > > all up. With email, you really need to take the > time > > to pretty it up. > > > > There are actually doctors who don't believe in > TCS??? > > I would like to discuss this a lot more! Like, > what > > is it don't they believe? > > > > YAH! I can't begin to imagine going to a doc and > > having him tell me that an actual physical > > manifestation isn't real! > > > > > > > > --- A Gosp wrote: > > > >> Hi everyone > >> Here are my two boring sappy (is that the right > >> word?) cents on some of the emails going back and > >> forth... > >> It is very hard to convey the concepts, emphasis > and > >> emotions that we attempt to communicate to each > >> other by email (without seeing someone's face). > >> Sometimes there are misunderstandings and part of > it > >> is that tsc is a very misunderstood and emotional > >> topic for most of us. And then of course, each > case > >> is so different depending on the levels involved, > >> function affected, etc...Having said that I want > to > >> thank people for the wealth of information shared > >> and all the help everyone provides here. > >> > >> I wanted to share with you guys some recent > >> experiences in case they might be useful for you. > >> > >> 1) I contacted my neurologist and told her about > the > >> surgery and progress so far. She was very nice > and > >> interested and wants all the records to present > my > >> case in her neurology conference. Although she > >> really wasn't able to help me and delayed my > ability > >> to get help and a diagnosis, this helped me be > less > >> angry and hopefully will at least keep this topic > in > >> the back of the mind of a whole group of > >> neurologists so if they see someone with tsc they > >> might recognize it and that person could get a > >> diagnosis and treatment if indicated sooner. > >> > >> 2) I also sent a nice email response to the spine > >> rehab doctor (at a very well known institute that > >> doesn't " believe " in tsc), that had emailed me > right > >> before surgery and was strongly opposed to the > >> diagnosis and plan of tsc surgery. I thanked him > for > >> his response and told him that although tsc is > very > >> controversial from being almost completely > >> incapacitated, I had gone through surgery and was > >> gradually improving. He was very professional > about > >> it and also wants to discuss and present my case. > >> Hopefully the next person they see with tsc > symptoms > >> they might " believe in tsc " . > >> > >> 3) For the last 3-4 wks I was getting a lot of > foot > >> pain in the bottom of my feet when I first woke > up > >> and tried to step, wearing shoes was becoming > >> torture, not wearing them too. I think this is > from > >> plantar fasciitis, secondary to my rehab > exercises, > >> maybe the tight calves or weak feet from tsc. > Bottom > >> line, pattern of pain is different from the tsc > leg > >> fatigue pain. For the last 2 weeks I've started > >> wearing shoes all day (I.e. no slippers) with > arch > >> supports, added on foot and calf stretches, took > >> some anti-inflammatories and it's really helped. > So > >> think about this for painful feet, especially if > >> they hurt a lot when you sit down for a while and > >> get up or first thing in the morning. I've used > >> www.foot.com<http://www.foot.com/> > >> www.footsmart.com<http://www.footsmart.com/> for > >> shoe inserts and stuff. It's a real challenge to > >> find shoes! > >> > >> 4) For , I don't know the rate of TFT > >> re-tethering. Maybe we can send that question to > >> some NSG out there > >> > >> ia > >> > >> [Non-text portions of this message have been > >> removed] > >> > >> > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 I have seen in many physical therapy/exercise type books comments about how certain spinal conditions including TSC are over-played as reasons why exercise or other physical activities are limited or inappropriate. Keep in mind that the vast majority of people who have tsc undiagnosed without symptoms have no idea there is anything " wrong " with them - my case exactly for 47 years! At least now I have a retroactive excuse as to why I wasn't better at sports back in highschool! Take care, --- Weaver wrote: > I agree with the stuff about not knowing the tone of > email. My tone is usually pretty clear, but > sometimes, people get it wrong because I tend to > just > say what I'm thinking without bothering to pretty it > all up. With email, you really need to take the time > to pretty it up. > > There are actually doctors who don't believe in > TCS??? > I would like to discuss this a lot more! Like, > what > is it don't they believe? > > YAH! I can't begin to imagine going to a doc and > having him tell me that an actual physical > manifestation isn't real! > > > > --- A Gosp wrote: > > > Hi everyone > > Here are my two boring sappy (is that the right > > word?) cents on some of the emails going back and > > forth... > > It is very hard to convey the concepts, emphasis > and > > emotions that we attempt to communicate to each > > other by email (without seeing someone's face). > > Sometimes there are misunderstandings and part of > it > > is that tsc is a very misunderstood and emotional > > topic for most of us. And then of course, each > case > > is so different depending on the levels involved, > > function affected, etc...Having said that I want > to > > thank people for the wealth of information shared > > and all the help everyone provides here. > > > > I wanted to share with you guys some recent > > experiences in case they might be useful for you. > > > > 1) I contacted my neurologist and told her about > the > > surgery and progress so far. She was very nice and > > interested and wants all the records to present my > > case in her neurology conference. Although she > > really wasn't able to help me and delayed my > ability > > to get help and a diagnosis, this helped me be > less > > angry and hopefully will at least keep this topic > in > > the back of the mind of a whole group of > > neurologists so if they see someone with tsc they > > might recognize it and that person could get a > > diagnosis and treatment if indicated sooner. > > > > 2) I also sent a nice email response to the spine > > rehab doctor (at a very well known institute that > > doesn't " believe " in tsc), that had emailed me > right > > before surgery and was strongly opposed to the > > diagnosis and plan of tsc surgery. I thanked him > for > > his response and told him that although tsc is > very > > controversial from being almost completely > > incapacitated, I had gone through surgery and was > > gradually improving. He was very professional > about > > it and also wants to discuss and present my case. > > Hopefully the next person they see with tsc > symptoms > > they might " believe in tsc " . > > > > 3) For the last 3-4 wks I was getting a lot of > foot > > pain in the bottom of my feet when I first woke up > > and tried to step, wearing shoes was becoming > > torture, not wearing them too. I think this is > from > > plantar fasciitis, secondary to my rehab > exercises, > > maybe the tight calves or weak feet from tsc. > Bottom > > line, pattern of pain is different from the tsc > leg > > fatigue pain. For the last 2 weeks I've started > > wearing shoes all day (I.e. no slippers) with arch > > supports, added on foot and calf stretches, took > > some anti-inflammatories and it's really helped. > So > > think about this for painful feet, especially if > > they hurt a lot when you sit down for a while and > > get up or first thing in the morning. I've used > > www.foot.com<http://www.foot.com/> > > www.footsmart.com<http://www.footsmart.com/> for > > shoe inserts and stuff. It's a real challenge to > > find shoes! > > > > 4) For , I don't know the rate of TFT > > re-tethering. Maybe we can send that question to > > some NSG out there > > > > ia > > > > [Non-text portions of this message have been > > removed] > > > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
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