Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Hey all: I only ate 11 GM of Carbs today...is this OK?? I ate a lot, drank a ton, but stayed away from " high carb " options. Let me know, OK??? Thanks August Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 Hey all: I only ate 11 GM of Carbs today...is this OK?? I ate a lot, drank a ton, but stayed away from " high carb " options. Let me know, OK??? Thanks August Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 August You done us all proud Girl!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 I have been developing a list of questions I have been gleaning from all the posts I've been reading as I have an appointment at the end of the month for a consultation as well. Here they are for anyone that may find them useful. You will also notice that there is info in some of the questions in parenthesis. I included info that was provided by some of the Doc's on these boards so I would have the info handy when I asked the question. Hope this helps! I apologize for any spelling errors. Not sure how the listserv will handle the formatting of this list. If it gets " messed up " I can e-mail it as a word document to anyone who wants it. Ann General Questions · How do I know that I don't have further issues such as adenomyosis, polyps, hypoplasia, cancer or growths outside the uterus in the abdominal cavity? · Will a MRI be done pre-procedure? Why or why not? What is the resolution on a MRI compared with the tests I have had? · What are all the options for my condition whether or not you can perform all of them? · If the fibroids grow suddenly, will these treatment options still be viable? · What do you usually suggest for women with symptoms like mine? How many patients have you referred out for procedures you can't do?(Gynes to interventional radiologists or IR to gyn's-since there is no one procedure that fits all patients). General Procedure Issues · I want the IV into my forearm for ease of use of arm. · Will a foley catheter be used? Will it be inserted post anesthesia? · What is your approach to pain management post-op? Who provides it and are they experienced in dealing with patients that have had this procedure? If I have negative/allergic reactions to the drug, what are the other options? Do you make use of patient-controlled pain medication in the hospital? · How long of a hospital stay is involved (minimum and maximum)? · What are the chances the procedure will relieve my symptoms (Heavy bleeding, large clots, gush bleeding, painful cramps, bulk symptoms, weight gain, large abdomen, reduced bladder capacity)? · What are the possible side effects and complications of the procedure and how often do they occur? · How many of these procedures have you done? How many in the last year? In the last month? · How many cases resulted in an open laparotomy and how many resulted in hysterectomy? · What is the possibility of forming adhesions and how can they be dealt with later? · What medications/drugs will be used during the procedure? Please include all anesthesia, pain medication, solutions used in relation to endoscopic equipment etc. · Can you speak to some of the patients who have had the procedure, if the doctor gets the permission from them in advance before giving their number to you? Include patients who've recently been operated on as well as those who are six months to a year or two in recovery. · How many people will be involved in the procedure? Are they all certified in their role, or are there students, residents and other people " in training " who will be involved in the procedure? · Are there other medications/vitamins/herbs that would conflict with the procedure? · Can you please provide a signed document indicating what type of procedure we have agreed on (Documentation regarding hysterectomy?). · Can the procedure be documented on videotape? Myomectomy · Have you ever performed a hysterectomy on a woman when the intent was to perform a myomectomy? · Who is doing the anesthesia and how often have they done anesthesia for this procedure and how often worked with you? What type of anesthesia do you recommend in this situation? If for some reason there is a problem with the initial anesthesia, what is the back-up plan? · Can the fibroids be removed with a mini-lap or a full laproscopic procedure? · Do you make use of an Interventional Radiologist during surgery to control bleeding? · Should excessive blood-loss occur, would you resort to a laparotomy or hysterectomy? · How will my fertility be preserved during surgery (attention to protecting the uterine cavity and tubes, use of adhesion barriers, etc)? · What would happen if anything suspicious is found during surgery? How would frozen section's be handled? Do you perform a biopsy on the fibroid to determine if it is cancerous? What routes would you take if it was determined to be cancerous? UAE · What method do you use to close the incision? Manual Pressure? Perclose? What about problems with the Perclose causing problems for further caths or uae's. What about narrowing of the vessel? (Perclose adds complexity. For a routine procedure that uses a small catheter, I think that it is not necessary. The advantage (ability to get the patient up and about more rapidly) is often not realized because of cramping or nausea after the UAE.) · Is there a difference in outcome based on device (product size, primary and secondary embolic material) used? · What type of material is used to plug the arteries? (PVA, BTW, Embospheres) (PVA is a plastic. It is NOT silicon or silicone. (BTW - Silicone is one of a class of plastics, PVA is in a different class, silicon is an element - one of the most common elements in the world. Silicon Dioxide is simple sand or glass). PVA has been used as an implanted biomaterial since the mid-1940s. It is one of the best known and safest biomaterials known to science. There are NO reports of adverse reactions (short or long term) to PVA. Embospheres are made of yet another plastic (tris-acryl), which also has a documented history of biocpmpatability spanning over 20 years. · What is the size of the particles? (Embolized with particles <355 microns in size which led to increased uterine ischemia and more uterine necrosis than with larger embolic particles). · What about UAE syndrome? (Roughly 15% of UAE patients experience this syndrome, that there is no known way to prevent it or cure it, and that the doctors are really not even sure what exactly is causing it. Post-Embolization Syndrome (PES), characterized by acute and/or chronic pain, temperatures of up to 102º, malaise, nausea, vomiting and severe night sweats). · How will we know if I have on Uterine artery or more than one on each side? If there are variations in the pattern how much experience do you have in dealing with this situation. How do you manage it? (about 1 woman in 50-100). · What is the exposure to radiation during this procedure? What are the risks from that? (There is an exposure of approximately 20 rads (radiation absorbed dose) or more depending on the length of time the procedure takes. The absorbed ovarian dose is significantly higher than from standard fluoroscopic diagnostic procedures). · Occurrence of side effects: · infection from tissue death of fibroids, which can lead to endometritis (infection of the uterus) which may result in lengthy hospitalization with intravenous antibiotics · foul vaginal odor, coming from the uterus · misembolization: polyvinyl alcohol (PVA) particles may inadvertently flow into organs or tissues where they should not be, causing damage to other organs or other parts of the body · damage to the ovaries (resulting from particles migrating to the ovaries) · vaginal expulsion of fibroid · failure to shrink fibroids or resolve symptoms · regrowth of fibroids increased uterine and fibroid volume Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2002 Report Share Posted January 10, 2002 I have been developing a list of questions I have been gleaning from all the posts I've been reading as I have an appointment at the end of the month for a consultation as well. Here they are for anyone that may find them useful. You will also notice that there is info in some of the questions in parenthesis. I included info that was provided by some of the Doc's on these boards so I would have the info handy when I asked the question. Hope this helps! I apologize for any spelling errors. Not sure how the listserv will handle the formatting of this list. If it gets " messed up " I can e-mail it as a word document to anyone who wants it. Ann General Questions · How do I know that I don't have further issues such as adenomyosis, polyps, hypoplasia, cancer or growths outside the uterus in the abdominal cavity? · Will a MRI be done pre-procedure? Why or why not? What is the resolution on a MRI compared with the tests I have had? · What are all the options for my condition whether or not you can perform all of them? · If the fibroids grow suddenly, will these treatment options still be viable? · What do you usually suggest for women with symptoms like mine? How many patients have you referred out for procedures you can't do?(Gynes to interventional radiologists or IR to gyn's-since there is no one procedure that fits all patients). General Procedure Issues · I want the IV into my forearm for ease of use of arm. · Will a foley catheter be used? Will it be inserted post anesthesia? · What is your approach to pain management post-op? Who provides it and are they experienced in dealing with patients that have had this procedure? If I have negative/allergic reactions to the drug, what are the other options? Do you make use of patient-controlled pain medication in the hospital? · How long of a hospital stay is involved (minimum and maximum)? · What are the chances the procedure will relieve my symptoms (Heavy bleeding, large clots, gush bleeding, painful cramps, bulk symptoms, weight gain, large abdomen, reduced bladder capacity)? · What are the possible side effects and complications of the procedure and how often do they occur? · How many of these procedures have you done? How many in the last year? In the last month? · How many cases resulted in an open laparotomy and how many resulted in hysterectomy? · What is the possibility of forming adhesions and how can they be dealt with later? · What medications/drugs will be used during the procedure? Please include all anesthesia, pain medication, solutions used in relation to endoscopic equipment etc. · Can you speak to some of the patients who have had the procedure, if the doctor gets the permission from them in advance before giving their number to you? Include patients who've recently been operated on as well as those who are six months to a year or two in recovery. · How many people will be involved in the procedure? Are they all certified in their role, or are there students, residents and other people " in training " who will be involved in the procedure? · Are there other medications/vitamins/herbs that would conflict with the procedure? · Can you please provide a signed document indicating what type of procedure we have agreed on (Documentation regarding hysterectomy?). · Can the procedure be documented on videotape? Myomectomy · Have you ever performed a hysterectomy on a woman when the intent was to perform a myomectomy? · Who is doing the anesthesia and how often have they done anesthesia for this procedure and how often worked with you? What type of anesthesia do you recommend in this situation? If for some reason there is a problem with the initial anesthesia, what is the back-up plan? · Can the fibroids be removed with a mini-lap or a full laproscopic procedure? · Do you make use of an Interventional Radiologist during surgery to control bleeding? · Should excessive blood-loss occur, would you resort to a laparotomy or hysterectomy? · How will my fertility be preserved during surgery (attention to protecting the uterine cavity and tubes, use of adhesion barriers, etc)? · What would happen if anything suspicious is found during surgery? How would frozen section's be handled? Do you perform a biopsy on the fibroid to determine if it is cancerous? What routes would you take if it was determined to be cancerous? UAE · What method do you use to close the incision? Manual Pressure? Perclose? What about problems with the Perclose causing problems for further caths or uae's. What about narrowing of the vessel? (Perclose adds complexity. For a routine procedure that uses a small catheter, I think that it is not necessary. The advantage (ability to get the patient up and about more rapidly) is often not realized because of cramping or nausea after the UAE.) · Is there a difference in outcome based on device (product size, primary and secondary embolic material) used? · What type of material is used to plug the arteries? (PVA, BTW, Embospheres) (PVA is a plastic. It is NOT silicon or silicone. (BTW - Silicone is one of a class of plastics, PVA is in a different class, silicon is an element - one of the most common elements in the world. Silicon Dioxide is simple sand or glass). PVA has been used as an implanted biomaterial since the mid-1940s. It is one of the best known and safest biomaterials known to science. There are NO reports of adverse reactions (short or long term) to PVA. Embospheres are made of yet another plastic (tris-acryl), which also has a documented history of biocpmpatability spanning over 20 years. · What is the size of the particles? (Embolized with particles <355 microns in size which led to increased uterine ischemia and more uterine necrosis than with larger embolic particles). · What about UAE syndrome? (Roughly 15% of UAE patients experience this syndrome, that there is no known way to prevent it or cure it, and that the doctors are really not even sure what exactly is causing it. Post-Embolization Syndrome (PES), characterized by acute and/or chronic pain, temperatures of up to 102º, malaise, nausea, vomiting and severe night sweats). · How will we know if I have on Uterine artery or more than one on each side? If there are variations in the pattern how much experience do you have in dealing with this situation. How do you manage it? (about 1 woman in 50-100). · What is the exposure to radiation during this procedure? What are the risks from that? (There is an exposure of approximately 20 rads (radiation absorbed dose) or more depending on the length of time the procedure takes. The absorbed ovarian dose is significantly higher than from standard fluoroscopic diagnostic procedures). · Occurrence of side effects: · infection from tissue death of fibroids, which can lead to endometritis (infection of the uterus) which may result in lengthy hospitalization with intravenous antibiotics · foul vaginal odor, coming from the uterus · misembolization: polyvinyl alcohol (PVA) particles may inadvertently flow into organs or tissues where they should not be, causing damage to other organs or other parts of the body · damage to the ovaries (resulting from particles migrating to the ovaries) · vaginal expulsion of fibroid · failure to shrink fibroids or resolve symptoms · regrowth of fibroids increased uterine and fibroid volume Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Hi Mike, Your comments on Zanaflex & it putting us in a kind of hypnotic state are very interesting. I'd never thought about that before & it could be true. My husband says that - like you - I usually see things when I'm very tired and right before I fall asleep. Luckily, he knows how to " handle " me by this time because I see and say some VERY weird things. I could write a book but no one would believe it!!! Some of the things that I see we can laugh at in the morning but others are very terrifying! Take care. Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Hi Pat, My husband and I had a good laugh about your talking about a girl that came and got in bed with you and your husband! Maybe she is related to the girl that I used to see sometimes. She came in thru the bathroom window. She would sit on the vanity and use my make-up. And beautiful music was playing all the time. When I got up to get closer to her she would go back out the bathroom window. She was so real that I would look out the window to see if I could see her going across the yard. I haven't seen her for quite some time so maybe she moved to your house!!! Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Hi Jerry,I have scoliosis,and in 1984 had 2 major surgeries on my spine,ending up with Harrington Rods being attached to my spine,to prevent further curvature.I was dx with PLS in 1988,but on looking back there were trips and falls that started about a year after the surgery,which was shortly after I became mobile again after the surgery.( I was pretty much immobilized for 9 months.)Hope this is of some help,Take care,Dave. Nunn Question > Has anyone else gone through the cervical spine problems ie buldged disc narrowing ect ect ect have surgery or surgeries before the pls was finally dxed ? > > Jerry > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 Hi Jerry,I have scoliosis,and in 1984 had 2 major surgeries on my spine,ending up with Harrington Rods being attached to my spine,to prevent further curvature.I was dx with PLS in 1988,but on looking back there were trips and falls that started about a year after the surgery,which was shortly after I became mobile again after the surgery.( I was pretty much immobilized for 9 months.)Hope this is of some help,Take care,Dave. Nunn Question > Has anyone else gone through the cervical spine problems ie buldged disc narrowing ect ect ect have surgery or surgeries before the pls was finally dxed ? > > Jerry > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Hello group need some help here. I need to find a place to purchase a handicapped van in the Detroit area. I know not to many from Michigan but maybe someone has a lead they could share would prefer used as don't have a lot of money to spend. Maybe one of you fine people have one for sale? Will any information would be very helpful I am sure. Thanks Shirley (Michigan) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Shirley, If no one of our list can be of help, we could ask our sister group (HSP) the same request. There are a lot more HSP people than us. I know this may seem like a simple suggestion, but have you looked in your newspaper? Or you could put an add in your local paper. I always see a lot of medical supplies in our local papers and, of course, hundreds of vehicles for sale. Good luck, Fremont, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Thanks I well look in paper guess is something I did not think of. Need this van asap as husband has just got to the point that he can no longer put chair in trunk and then walk to the drivers seat. So I guess the next step is to get a van with a lift or ramp in it. This will inable him to continue to work which is very very important to him. Has been his life now and I think always will be. So I guess I am on another new quest. Thanks Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Thanks Jerry will check into that. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Thanks Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 There is a place in Bay City, if that is of any help I can send you more details. Dick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 shirly when i lived in mich the neruo clinic at Battle Creek Hospital had a handicap swap like publication cant remeber the name of it but there were often very good deals in it Jerry Re: question Thanks I well look in paper guess is something I did not think of. Need this van asap as husband has just got to the point that he can no longer put chair in trunk and then walk to the drivers seat. So I guess the next step is to get a van with a lift or ramp in it. This will inable him to continue to work which is very very important to him. Has been his life now and I think always will be. So I guess I am on another new quest. Thanks Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 Shirley: I'm in Canada and have noticed, during appts. at the local Rehabilitation clinic, there are alot of advertisements posted on bulletin boards throughout the clinic. Many of the ads are for used modified vans that people are selling. Hope this helps and good luck with finding one. Jen _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 I believe that the weakness in the legs gets worse with more walking. I was in the grocery store and only had to walk a short distance. Even with the help of the cart I thought my legs would not hold out to get me back to my car, but they did, thank God. Question Do others feel when as the day goes on the weakness in legs gets worse and worse more with walking ect ? Jerry SImmons Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2002 Report Share Posted June 11, 2002 jerry: My answer for me is, yes, only if I push myself to hard, even when I know my limits. Rita Luv & Hugs! ************************************* Some people succeed in spite of their handicap. Others succeed because of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2002 Report Share Posted June 12, 2002 Jerry, Some days are like that for me, especially when we go shopping. I just have to take a nap when we return. Strangely, though, there are other days when I seem to be stronger as the day progresses. These particular days are usually when I am at work and able to sit when I need to and walk around when I want to. So, I guess I do feel weaker when I walk longer during the day. Hadn't really thought about it. It just came with the territory. Mike At 11:13 AM 6/11/02 -0400, you wrote: >Do others feel when as the day goes on the weakness in legs gets worse >and worse more with walking ect ? > > >Jerry SImmons > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 Thanks, Donna I know that I'm not alone but there is times when I feel that I am. My children are wonderful but sometimes I think they get so tired out and I don't want to bother them. I'm so happy to have people who actually know what is happening and can relate. Gloria Re: Question > Gloria, > I have both problems, My head seems to drop back, like I'm looking > up all the time. And my depression is so bad at times I just want > to cry. Your not alone. > I've changed my position, my computer, and my reading glasses, but > my shoulders still slump and my head drops back. When I get > depressed, I try to find a good movie to watch or a book to read. > Sometimes I just go outside and that helps (but not when it's hot). > You will probably get a lot of replys to this message. > You have my best wishes, > Donna > > > > I have a question, I seem to have some trouble with holding my > head up, my neck seems to want to bend and this is causing lots of > pain and also the third virtabea on my spine swells when this > happens, does anyone else experience this. I'm taking 20mgs of > baclofen every 6hrs and 50mgs of amitrypline at be bedtime but it > seems to help for only a little while. This is starting to depress > me and I find that I cry for no reason, i'm taking 30mg of Paxil a > day but find that it doesn't help the crying episodes. > > > > Gloria > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 Thanks, Donna I know that I'm not alone but there is times when I feel that I am. My children are wonderful but sometimes I think they get so tired out and I don't want to bother them. I'm so happy to have people who actually know what is happening and can relate. Gloria Re: Question > Gloria, > I have both problems, My head seems to drop back, like I'm looking > up all the time. And my depression is so bad at times I just want > to cry. Your not alone. > I've changed my position, my computer, and my reading glasses, but > my shoulders still slump and my head drops back. When I get > depressed, I try to find a good movie to watch or a book to read. > Sometimes I just go outside and that helps (but not when it's hot). > You will probably get a lot of replys to this message. > You have my best wishes, > Donna > > > > I have a question, I seem to have some trouble with holding my > head up, my neck seems to want to bend and this is causing lots of > pain and also the third virtabea on my spine swells when this > happens, does anyone else experience this. I'm taking 20mgs of > baclofen every 6hrs and 50mgs of amitrypline at be bedtime but it > seems to help for only a little while. This is starting to depress > me and I find that I cry for no reason, i'm taking 30mg of Paxil a > day but find that it doesn't help the crying episodes. > > > > Gloria > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2002 Report Share Posted August 9, 2002 Gloria, I have trouble with holding my head up when I'm tired. I get a lot of neck pain. I think my head is just too heavy, must be my overly large brain??? Yeah, right. My biggest problem is when I sit at a desk and work on the computer. That is a real killer for me. I usually sit in an easy chair with my laptop on my lap (hence the name laptop! :-) I've actually named my computer " Laprador " ). Thomson Solana Beach, Ca Visit www.als-pls.org and www.geocities.com/mdmfoo/pls.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2002 Report Share Posted August 10, 2002 Gloria, I have the same problem as you with regard to your emotions. It is called emotional lability and is 1 of the symptoms of PLS. There is help though. If Paxil does not help, there are 5 or 6 other drugs that are used for emotional lability. I taike imipramine. Make your Dr. test a few on you, it only takes a few days for it to help emotional lability not the 30 days it will take if it's depression. Some helped me, but made the spasticity worse. Imipramine also helps reduce my bladder spasms. Remember too that stress and fatigue can make all your symotoms worse. Just likle J4nnifer, I cannot work at the computer very long before my neck tightens up and gives me fierce headaches. Working was also a big stress factor for me and now that I retired, the headaches are much reduced as well as the exhaustion. Ask any questions you like here, someone can giuve you insight. Regards, Sue Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2002 Report Share Posted December 22, 2002 Hi Kim, My name is , and I live in the Poconos PA. It is called the McGill Pain Index Chart. If you ever lose this you can always just do a search and you will find it but once you pull it up, just put it in favorites. All my love, your new sis http://www.rsdcare.org/McGill%20Pain%20Index.html -- Question Hi Y'all,I once came across a chart that rated RSD pain compared to other sources of pain. Do any of y'all know what I'm talking about or where I might find the chart again??Hope you're all having a wonderful holiday!Kim Quote Link to comment Share on other sites More sharing options...
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