RE: [TMIC] Medications
Janice...I believe my body has gotten so used to these meds..that Dr. Kerr felt it would be good to try a change.The new drugs he may try after I have weaned myself off the Lyrica are Lamictal or Tegretol (for the banding) and Provigil (for fatigue)I would love to hear from other members who currently take these drugs as to how beneficial they are. As far as the meds I am weaning off I really had no bad reactions...it just feels like they are no longer helping. All the best! Rob in New Jersey From: Janice [mailto:jan...@centurytel.net] Sent: Thursday, July 16, 2009 11:40 PM To: Catherine; Robert Pall; Transverse Mylitis Group Subject: Re: [TMIC] Medications Rob, why are you getting off the meds?For the usual taking too many drugs thing or are you having adverse reactions? Janice - Original Message - From: Catherine mailto:camoa...@yahoo.com To: Robert Pall mailto:rp...@neillsupply.com ; Transverse Mylitis Group mailto:tmic-list@eskimo.com Sent: Thursday, July 16, 2009 2:47 PM Subject: Re: [TMIC] Medications Good Luck Rob I wish you the best!! From: Robert Pall rp...@neillsupply.com To: Tmic-list@eskimo.com Sent: Thursday, July 16, 2009 2:40:07 PM Subject: [TMIC] Medications Medications I mentioned previously that I visited Dr. Kerr on 7/1/09 and we decided to adjust my meds. Presently for the most part I take 2 meds for the banding, pins needles and numbness. They are 4-Aminopyridine and Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker) twice a day (20 mgs each)...I have been taking this medicine for approx. 8 years.2 weeks ago I cut my dosage in half and starting tomorrow I will cease taking this med...so far I have not noticed any changes resulting in the lower dose and I will keep you informed as to any changes I experience going off this med completely. I also take 150 mg of Lyrica 3x per day. Starting today I will cut this down to twice a day for 2 weeks and then once a day for 2 weeks before stopping it altogether. Hopefully I will notice little or no change getting off this medication which I have been on for more than 4 years. Assuming no problems getting off the Lyrica..Dr. Kerr will prescribe a new med for the banding (don't ask me the name...I promise to let you know)...he also said he could prescribe a new med to help with my constant fatigue (again don't ask me the name). As per his advice I am now swimming for an hour at least 3 times a week..it is not doing much for the TM but it is getting my body in better shape. Having had TM for almost 12 years my dreams of a cure seem more and more distant..so I therefore vow to try and keep my body as healthy as possible and deal with the pain and discomfort as much as medicine can help me. I will keep the group informed as to the weaning off of my current meds and any new meds I begin to take! All the best! Rob in New Jersey ATT130301.gif
RE: [TMIC] Medications
Rob,
I have been taking Tegretol for a couple of years now for the banding and it is
working great. I still have some banding there but not nearlly as bad as it
used to be. It doesnt take my breath away when it happens and I can continue
to function thur episodes now.
I tried the Lamictal, but developed a rash so had to stop taking it before I
ever found out if it would work.
Lynne
--- On Fri, 7/17/09, Robert Pall rp...@neillsupply.com wrote:
From: Robert Pall rp...@neillsupply.com
Subject: RE: [TMIC] Medications
To: Janice jan...@centurytel.net, Tmic-list@eskimo.com
Date: Friday, July 17, 2009, 7:38 AM
#yiv1258366108 DIV {
MARGIN:0px;}
Janice...I believe my body has gotten so used to these meds..that Dr. Kerr felt
it would be good to try a change.The new drugs he may try after I have weaned
myself off the Lyrica are Lamictal or Tegretol (for the banding) and Provigil
(for fatigue)I would love to hear from other members who currently take
these drugs as to how beneficial they are. As far as the meds I am weaning off
I really had no bad reactions...it just feels like they are no longer helping.
All the best!
Rob in New Jersey
Re: [TMIC] Medications
The pump is for the spasms. It works the same as oral Baclofen but uses much less medication to get the same results. The actual pump is inserted just above and to the left side of my belly button. Then the tubing runs from there around my left side and into the lower part of my spinal column. The pump is about 4 across and sticks out about an inch and a half. Its not really noticable under looser fitting tops, but real noticable in the summer, especially in my bathing suit. No more clingy fabrics for me lol. Lynne --- On Thu, 7/16/09, Janice jan...@centurytel.net wrote: From: Janice jan...@centurytel.net Subject: Re: [TMIC] Medications To: lynne myers lynnemye...@yahoo.com, Bernie (SFS)Butcher bernie.butc...@honeywell.com, tmic tmic-list@eskimo.com Date: Thursday, July 16, 2009, 11:45 PM Is the Baclofen pump you are using for pain or spasms, etc.? Also, where is it inserted? Janice
RE: [TMIC] Medications
Hi Lynne - my neuro prescribed 60mg/day of of baclofen pills (working up in increments from 10mg), but when I got to 20mg, I became like a rag doll. I couldn't sit up without tilting over, and when I got tired (like at 5pm every day), I could hardly stand up (with walker of course). She said with the pump, that wouldn't happen, because it's a minute dose, directly where I need it. The only bladder issue I have is going too often. If my legs become weak, I will be very disappointed BERNARD BUTCHER From: lynne myers [mailto:lynnemye...@yahoo.com] Sent: Thursday, July 16, 2009 11:03 PM To: Butcher, Bernie (SFS); tmic Subject: RE: [TMIC] Medications Barney, I have had a baclofen pump in for a couple of years now. Just wish the results I was getting now were half as good as what I got from the trial. But when my dosage is adjusted high enough to get those results I have increased bladder issues and weakness. Hoping things work out better for you. Lynne --- On Thu, 7/16/09, Butcher, Bernie (SFS) bernie.butc...@honeywell.com wrote: From: Butcher, Bernie (SFS) bernie.butc...@honeywell.com Subject: RE: [TMIC] Medications To: Robert Pall rp...@neillsupply.com, Tmic-list@eskimo.com Date: Thursday, July 16, 2009, 3:15 PM Hi Rob - do you take Baclofen? Next week I am going in the hospital for a spinal tap trial before I get a Baclofen pump installed. I am wary about the whole thing Barney
RE: [TMIC] Medications
Hi Rob - I took provigil but it only worked sometimes. Now I take Ritalin BERNARD BUTCHER From: Robert Pall [mailto:rp...@neillsupply.com] Sent: Friday, July 17, 2009 7:39 AM To: Janice; Tmic-list@eskimo.com Subject: RE: [TMIC] Medications Janice...I believe my body has gotten so used to these meds..that Dr. Kerr felt it would be good to try a change.The new drugs he may try after I have weaned myself off the Lyrica are Lamictal or Tegretol (for the banding) and Provigil (for fatigue)I would love to hear from other members who currently take these drugs as to how beneficial they are. As far as the meds I am weaning off I really had no bad reactions...it just feels like they are no longer helping. All the best! Rob in New Jersey From: Janice [mailto:jan...@centurytel.net] Sent: Thursday, July 16, 2009 11:40 PM To: Catherine; Robert Pall; Transverse Mylitis Group Subject: Re: [TMIC] Medications Rob, why are you getting off the meds?For the usual taking too many drugs thing or are you having adverse reactions? Janice - Original Message - From: Catherine mailto:camoa...@yahoo.com To: Robert Pall mailto:rp...@neillsupply.com ; Transverse Mylitis Group mailto:tmic-list@eskimo.com Sent: Thursday, July 16, 2009 2:47 PM Subject: Re: [TMIC] Medications Good Luck Rob I wish you the best!! From: Robert Pall rp...@neillsupply.com To: Tmic-list@eskimo.com Sent: Thursday, July 16, 2009 2:40:07 PM Subject: [TMIC] Medications Medications I mentioned previously that I visited Dr. Kerr on 7/1/09 and we decided to adjust my meds. Presently for the most part I take 2 meds for the banding, pins needles and numbness. They are 4-Aminopyridine and Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker) twice a day (20 mgs each)...I have been taking this medicine for approx. 8 years.2 weeks ago I cut my dosage in half and starting tomorrow I will cease taking this med...so far I have not noticed any changes resulting in the lower dose and I will keep you informed as to any changes I experience going off this med completely. I also take 150 mg of Lyrica 3x per day. Starting today I will cut this down to twice a day for 2 weeks and then once a day for 2 weeks before stopping it altogether. Hopefully I will notice little or no change getting off this medication which I have been on for more than 4 years. Assuming no problems getting off the Lyrica..Dr. Kerr will prescribe a new med for the banding (don't ask me the name...I promise to let you know)...he also said he could prescribe a new med to help with my constant fatigue (again don't ask me the name). As per his advice I am now swimming for an hour at least 3 times a week..it is not doing much for the TM but it is getting my body in better shape. Having had TM for almost 12 years my dreams of a cure seem more and more distant..so I therefore vow to try and keep my body as healthy as possible and deal with the pain and discomfort as much as medicine can help me. I will keep the group informed as to the weaning off of my current meds and any new meds I begin to take! All the best! Rob in New Jersey ATT130301.gif
Re: [TMIC] Medications
As you all are contemplating your Baclofen doses or trial, I am waiting for the neurosurgeon to remove my Baclofen pump. I had my pump put in July 2006. Initially the pump worked well for preventing spasms, but I did not know that it would prevent me from standing or walking, because I wasn't getting any physical therapy for a very long time. Once I got the chance to get physical therapy, I wasn't able to stand at all. I was like a limp noodle. No matter how hard they tried, I wasn't able to stand, not in the standing frame nor with a walker. I had the doctor reduce the Baclofen dose in my pump, in small increments. No matter how much he reduced, there was still no change. About six months ago, my pump began to give me problems such as swelling and tenderness to the touch. I spent two visits in the hospital within three months, for the same problem. I was told they couldn't find anything wrong with the pump, but each time they put me on intravenous antibiotics and the swelling went down and tenderness diminished. This led me to believe that there was an infection somewhere. After my pump kept swelling and the neurosurgeon's nurse told me that the pump is a foreign object in your body, and the body is constantly trying to reject it, and some patients pumps were rejected totally outside of the body, I decided to have my pump removed. My oral Baclofen was started up again, and I was weaned off the pump. I then began to have more tone, and am able to stand better. I'm not able to walk yet, but I have some inpatient physical therapy coming up once I get this pump removed. I tried once to have the pump removed but was unsuccessful. They could not get an IV in. They tried from my feet to my exterior Jugular. Once I get over this bladder infection, they will try again. Wish me luck. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis **Can love help you live longer? Find out now. (http://personals.aol.com/articles/2009/02/18/longer-lives-through-relationships/?ncid=emlweu slove0001)
RE: [TMIC] Medications
Hi Naomi - please keep me informed, they want to put one in me if trial works BERNARD BUTCHER From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Friday, July 17, 2009 12:49 PM To: Butcher, Bernie (SFS); tmic-list@eskimo.com Subject: Re: [TMIC] Medications As you all are contemplating your Baclofen doses or trial, I am waiting for the neurosurgeon to remove my Baclofen pump. I had my pump put in July 2006. Initially the pump worked well for preventing spasms, but I did not know that it would prevent me from standing or walking, because I wasn't getting any physical therapy for a very long time. Once I got the chance to get physical therapy, I wasn't able to stand at all. I was like a limp noodle. No matter how hard they tried, I wasn't able to stand, not in the standing frame nor with a walker. I had the doctor reduce the Baclofen dose in my pump, in small increments. No matter how much he reduced, there was still no change. About six months ago, my pump began to give me problems such as swelling and tenderness to the touch. I spent two visits in the hospital within three months, for the same problem. I was told they couldn't find anything wrong with the pump, but each time they put me on intravenous antibiotics and the swelling went down and tenderness diminished. This led me to believe that there was an infection somewhere. After my pump kept swelling and the neurosurgeon's nurse told me that the pump is a foreign object in your body, and the body is constantly trying to reject it, and some patients pumps were rejected totally outside of the body, I decided to have my pump removed. My oral Baclofen was started up again, and I was weaned off the pump. I then began to have more tone, and am able to stand better. I'm not able to walk yet, but I have some inpatient physical therapy coming up once I get this pump removed. I tried once to have the pump removed but was unsuccessful. They could not get an IV in. They tried from my feet to my exterior Jugular. Once I get over this bladder infection, they will try again. Wish me luck. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Can love help you live longer? Find out now http://personals.aol.com/articles/2009/02/18/longer-lives-through-relat ionships/?ncid=emlweuslove0001 .
[TMIC] Constant Fatigue
Did I read correctly? Is it possible Dr. Kerr will prescribe Rob medication for constant fatigue? and that it may work? If it does, I'd jump for joy if I could do it without falling. I've accepted getting up in the morning just as exhausted as I was when I went to bed for too many years. Wouldn't it be great, dear TM brothers and sisters if Dr. Kerr came up with something new (that works)? Frank, what do you think? What do you do for fatigue? R
Re: [TMIC] Constant Fatigue
*Hi Regina, * ** *I use Amantadine for severe fatigue. It's an anti viral that is also used for Parkinsons patients and neurological fatigue. It works like a charm and is so much cheaper than Provigil. * ** *Gracie*
Re: [TMIC] Medications
I tried once to have the pump removed but was unsuccessful. They could not get an IV in. They tried from my feet to my exterior Jugular. Once I get over this bladder infection, they will try again. Wish me luck. Naomi, Your story is very familiar. I know dozens of people who have had the same problems with their pumps. Not being able to place an IV into your body doesn't happen anymore in North America or Europe. Real Doctors know how to put Butterfly needles in the back of your hands, or do a Cut down on a big vein. I think you need to find an Attorney to help with your health care. You might get adequate care along with money for your pain and suffering!! Take care F
Re: [TMIC] Constant Fatigue
Frank, what do you think? What do you do for fatigue? R, I take 100 mg of Privigil before breakfast. It helps, but I still have a nap at 2 PM, but sleep at night like a baby F
Re: [TMIC] Medications
Everyone I tell about them not being able to get an IV in, just cannot believe it. My sister, who is a nurse, said I need to go to a different hospital. I am in the process of having my primary care physician set me up with a neurosurgeon at University of Michigan Hospital. I sure hope so, because I am actually afraid to go back there. It t00k three nurses and an anesthesiologists, using ultrasound, and poking me all over, to tell me that they could not get the IV in. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis **Can love help you live longer? Find out now. (http://personals.aol.com/articles/2009/02/18/longer-lives-through-relationships/?ncid=emlweu slove0001)
Re: [TMIC] Nerve Pain
Hey Randy, You talked about chest pains. You may need to see a chiropractic for a pinched nerve. When I was 5, I failed from the top of a slide to the ground head first. It wasn't until I was 15 that I was having 3 mild 1 that put me to my knees chest pain a day. All the doctors would say is that I couldn't be a weight body builder. I could had told my parents that for the $500. At this point I was ready to commit suicide. My step-father came home one day and said, We could try a chiropractor. When I did see a chiropractor, he had me stand and bend left and then bend right. Standing behind me and pointing to the front of my body. He then said, You are hurting here here in all 4 spots. He was right on all 4 spots. It did take some time to get fully better, but I did feel better after the first visit. Hope this helped, Hope you find out what IT is, Todd in CC, TX --- On Tue, 7/14/09, rj_ran...@yahoo.com rj_ran...@yahoo.com wrote: From: rj_ran...@yahoo.com rj_ran...@yahoo.com Subject: Re: [TMIC] Nerve Pain To: alle...@aol.com, tmic-list@eskimo.com Date: Tuesday, July 14, 2009, 4:04 PM Hi Ella, its interesting that you commented of pain below ribs. For years I have had an electric shocking sensation in the front left ribs near sternum and towards the bottom. Just before the TM diagnoses in 05 I had been having horrific chest pains that would sometimes put me to the floor. A full cardio exam consisting of everything from EKG to nuclear dye revealed a perfect heart of a four year old and the best heart rythym and blood pressure among my contemporaries and even better than the average teen. No cause was discovered for the pain but a suggestion of pulled muscles. The pain had been a consistent and growing manifestation since age 19. After the TM diagnose (the actually language in the lit on my case was multiple myelopothy ... with a presentatipn of transverse myelopothy. In O6 the diagnoses was confirmed transverse myelopthy resulting in bladder disfunction ... reduction in motor function ... and sensory anomolies with parasenthis (spelling). However even my neuro was baffled by the electric pain in my chest but felt it was neuropathic in nature. Befor 05 the pattern was specific but since 05 the chest pain is irregular in location and occassionally but rarely also strikes in my back. I sometimes think that I'm having a heart attack and mentally think, this is the big one! Elizabeth, I'm coming home!. I had a series of chest pains followed by the first facial pains ever just before my last major episodes last fall and started again with them a few weeks ago followed soon by a return of the lighting strikes in my soles of my feet and down my right leg and the return of face pain. Tegretal and neurotin cleared the face pain up in just days but not the low back, leg or chest pains. Curiosly, I recently started having the same shock like sensations in my back neck. This is a first experience but not that painful just enough to catch me off guard. After those little funny jolts my shoulders feel sore and brused like as if I've had a intense work out about 3 days ago. I also notice that my right arm from shoulder to hand feels heavier and my legs feel weighed down as if bags of sand are tied to them. Eventhough the chest pain has been among my first and biggest complaints it is totally shurged off by all the specialists. As for the other experiences my main neuro calls them textbook presentation of classic m.s. and then becomes frustrated by the lack of supportive data from all of the test results. So its a big mystery to me. --Original Message-- From: alle...@aol.com To: tmic-list@eskimo.com Subject: Re: [TMIC] Nerve Pain Sent: Jul 14, 2009 3:34 PM Sorry about just getting back to you guys but my pain was from the bottom of my ribs down and they were a cortisone shot. Ella Summer concert season is here! Find your favorite artists on tour at TourTracker.com http://www.tourtracker.com/?ncid=emlcntusmusi0006 . Sent from my Verizon Wireless BlackBerry
Re: [TMIC] New onset of TM - little girl
Oh, God (and I mean that), I couldn't agree more. The only way I would feel okay with that is if Dr. Kerr agreed with them. ---Original Message--- From: roseofr...@aol.com Date: 7/17/2009 2:18:36 PM To: jrush...@columbiaenergyllc.com Subject: Re: [TMIC] New onset of TM - little girl Oh Jeanne..If you know that childs Mom tell her NOT to let them put that child on chemo! They will totally destroy her immune system and that is the LAST thing that child needs. Boy do I ever hope Dr. Kerr talks to the Mom and gives her the same advice! They need to let the steroids do their work and get her into PT.and on vitamins. I have lifted her in prayerif our Father feels the same way I do, He will keep the doctors from doing the wrong thing. Hugs, Lynn A Good Credit Score is 700 or Above. See yours in just 2 easy steps! 01_tile.jpg01_side.gif
Fwd: [TMIC] Medications
I sent the attached to Robert but FYI - - Forwarded Message - From: CANDIS KALLEY cakal...@embarqmail.com To: Robert Pall rp...@neillsupply.com Sent: Friday, July 17, 2009 7:58:36 AM GMT -05:00 US/Canada Eastern Subject: Re: [TMIC] Medications I have tried the Provigil with little or no difference in the level of fatigue. I also tried Amantadine with the same results. Provigil is very expensive so try to get a sample before buying. Life is short! Break the rules! Forgive quickly! Kiss slowly! Love truly, Laugh uncontrollably . And never regret anything that made you smile. Prayers and thoughts for you and yours, Candy K. - Original Message - From: Robert Pall rp...@neillsupply.com To: Janice jan...@centurytel.net , Tmic-list@eskimo.com Sent: Friday , July 17, 2009 7:38:57 AM GMT -05:00 US/Canada Eastern Subject: RE: [TMIC] Medications Janice...I believe my body has gotten so used to these meds..that Dr. Kerr felt it would be good to try a change.The new drugs he may try after I have weaned myself off the Lyrica are Lamictal or Tegretol (for the banding) and Provigil (for fatigue)I would love to hear from other members who currently take these drugs as to how beneficial they are. As far as the meds I am weaning off I really had no bad reactions...it just feels like they are no longer helping. All the best! Rob in New Jersey From: Janice [ mailto:jan...@centurytel.net ] Sent: Thursday , July 16, 2009 11:40 PM To: Catherine; Robert Pall; Transverse Mylitis Group Subject: Re: [TMIC] Medications Rob, why are you getting off the meds? For the usual taking too many drugs thing or are you having adverse reactions? Janice - Original Message - From: Catherine To: Robert Pall ; Transverse Mylitis Group Sent: Thursday , July 16, 2009 2:47 PM Subject: Re: [TMIC] Medications Good Luck Rob I wish you the best!! From: Robert Pall rp...@neillsupply.com To: Tmic-list@eskimo.com Sent: Thursday , July 16, 2009 2:40:07 PM Subject: [TMIC] Medications Medications I mentioned previously that I visited Dr. Kerr on 7/1/09 and we decided to adjust my meds. Presently for the most part I take 2 meds for the banding, pins needles and numbness. They are 4-Aminopyridine and Lyrica. I was taking the 4-aminopyridine (a Potassium channel blocker) twice a day (20 mgs each)…I have been taking this medicine for approx. 8 years…..2 weeks ago I cut my dosage in half and starting tomorrow I will cease taking this med…so far I have not noticed any changes resulting in the lower dose and I will keep you informed as to any changes I experience going off this med completely. I also take 150 mg of Lyrica 3x per day. Starting today I will cut this down to twice a day for 2 weeks and then once a day for 2 weeks before stopping it altogether. Hopefully I will notice little or no change getting off this medication which I have been on for more than 4 years. Assuming no problems getting off the Lyrica..Dr. Kerr will prescribe a new med for the banding (don't ask me the name…I promise to let you know)…he also said he could prescribe a new med to help with my constant fatigue (again don't ask me the name). As per his advice I am now swimming for an hour at least 3 times a week..it is not doing much for the TM but it is getting my body in better shape. Having had TM for almost 12 years my dreams of a cure seem more and more distant..so I therefore vow to try and keep my body as healthy as possible and deal with the pain and discomfort as much as medicine can help me. I will keep the group informed as to the weaning off of my current meds and any new meds I begin to take! All the best! Rob in New Jersey
Re: [TMIC] New onset of TM - little girl
*It depends on the underlying cause of her TM. If it is something like NMO (As in my case.) then immunosuppression via chemo would be something that a neuro would definitely consider. If it is idiopathic---then, no.* ** *Respectfully, * *Grace* *(NMO since 2005)*
Re: [TMIC] Medications
Naomi, If you have a choice of neurosurgeons at U of M I highly recommend Dr. Sager. He did my pump surgery. Lynne --- On Fri, 7/17/09, ladyno...@aol.com ladyno...@aol.com wrote: From: ladyno...@aol.com ladyno...@aol.com Subject: Re: [TMIC] Medications To: fr...@franksheldon.com, tmic-list@eskimo.com Date: Friday, July 17, 2009, 4:54 PM Everyone I tell about them not being able to get an IV in, just cannot believe it. My sister, who is a nurse, said I need to go to a different hospital. I am in the process of having my primary care physician set me up with a neurosurgeon at University of Michigan Hospital. I sure hope so, because I am actually afraid to go back there. It t00k three nurses and an anesthesiologists, using ultrasound, and poking me all over, to tell me that they could not get the IV in. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Can love help you live longer? Find out now.
Re: [TMIC] New onset of TM - little girl
Jeanne, first of all Colby is of course in my prayers. I just can't believe she is from Dayton, your intimate little town. My goodness - so rare. Ok you're upset that the doctors want to put her on chemo. I have been on chemo since the beginning of TM 7 years ago. The reason for this is because I also have Sjogrens/Lupus, which is what caused my TM in the first place. My immune system needs to be suppressed so that hopefully it will not attack my spine again. I have re-current TM because of my other autoimmune diseases. It is NOT unusual for the doctors to find a positive ANA when running all the tests when she first presented with symptoms. If she does not have RA,Sjogrens,Lupus or some other autoimmune disease or re-current TM I would question the chemo definitely. But if she does have one of the above, it is very important to get her on the chemo as soon as possible to avoid any relapse. How old is Colby now? I'm so glad the doctors knew to get her on steroids - I hope they gave her IV Solumedrol?? It's a great idea if the doctor will call Dr. Kerr - this sounds like it could be a complicated case. I will keep Colby and her family in my thoughts and prayers. Please keep us updated? Thanks Jeanne hugs, Linda (Eagle,ID) - Original Message - From: jrushtonmailto:jrush...@columbiaenergyllc.com To: tmicmailto:tmic-list@eskimo.com Sent: Friday, July 17, 2009 8:05 AM Subject: [TMIC] New onset of TM - little girl Prayers, please, again for a little girl by the name of Colby from here in Dayton who is in the Children's Hospital in Spokane with the new onset of TM. They did give her the steroids and now want to put her on chemo! Mom just called me and I said to call Dr. Kerr and beg to talk to him or one of his associates and to please have her doctors do the same before they start the chemo. She will let us know what happens. Gunny, can you help with this, maybe open some doors for her and her family? Jeanne 01_side.gif01_tile.jpg
RE: [TMIC] Medications
I am also considering having my pump removed but not because I am having any problems with it, just because of the cost of maintaining and getting it filled. Even with health insurance my co-pays and my 20% end up costing me well over $400 every three months when I get it filled. That and having to drive a couple hundred miles to get it done. Lynne --- On Fri, 7/17/09, Butcher, Bernie (SFS) bernie.butc...@honeywell.com wrote: From: Butcher, Bernie (SFS) bernie.butc...@honeywell.com Subject: RE: [TMIC] Medications To: ladyno...@aol.com, tmic-list@eskimo.com Date: Friday, July 17, 2009, 1:30 PM Hi Naomi - please keep me informed, they want to put one in me if trial works BERNARD BUTCHER From: ladyno...@aol.com [mailto:ladyno...@aol.com] Sent: Friday, July 17, 2009 12:49 PM To: Butcher, Bernie (SFS); tmic-list@eskimo.com Subject: Re: [TMIC] Medications As you all are contemplating your Baclofen doses or trial, I am waiting for the neurosurgeon to remove my Baclofen pump. I had my pump put in July 2006. Initially the pump worked well for preventing spasms, but I did not know that it would prevent me from standing or walking, because I wasn't getting any physical therapy for a very long time. Once I got the chance to get physical therapy, I wasn't able to stand at all. I was like a limp noodle. No matter how hard they tried, I wasn't able to stand, not in the standing frame nor with a walker. I had the doctor reduce the Baclofen dose in my pump, in small increments. No matter how much he reduced, there was still no change. About six months ago, my pump began to give me problems such as swelling and tenderness to the touch. I spent two visits in the hospital within three months, for the same problem. I was told they couldn't find anything wrong with the pump, but each time they put me on intravenous antibiotics and the swelling went down and tenderness diminished. This led me to believe that there was an infection somewhere. After my pump kept swelling and the neurosurgeon's nurse told me that the pump is a foreign object in your body, and the body is constantly trying to reject it, and some patients pumps were rejected totally outside of the body, I decided to have my pump removed. My oral Baclofen was started up again, and I was weaned off the pump. I then began to have more tone, and am able to stand better. I'm not able to walk yet, but I have some inpatient physical therapy coming up once I get this pump removed. I tried once to have the pump removed but was unsuccessful. They could not get an IV in. They tried from my feet to my exterior Jugular. Once I get over this bladder infection, they will try again. Wish me luck. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis Can love help you live longer? Find out now.
Re: [TMIC] Medications
Hi Naomi, You are in my prayers. I can see why your body would see the pump as a foreign object and naturally want to reject it. So, may you heal quickly from this bladder infection so the doctor is able to get that pump removed safely. Looking forward to hearing that you are feeling so much better and are back in physical therapy. Take care, Naomi, and please keep us posted on how you're doing. Linda - Original Message - From: ladyno...@aol.commailto:ladyno...@aol.com To: bernie.butc...@honeywell.commailto:bernie.butc...@honeywell.com ; tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Friday, July 17, 2009 10:48 AM Subject: Re: [TMIC] Medications As you all are contemplating your Baclofen doses or trial, I am waiting for the neurosurgeon to remove my Baclofen pump. I had my pump put in July 2006. Initially the pump worked well for preventing spasms, but I did not know that it would prevent me from standing or walking, because I wasn't getting any physical therapy for a very long time. Once I got the chance to get physical therapy, I wasn't able to stand at all. I was like a limp noodle. No matter how hard they tried, I wasn't able to stand, not in the standing frame nor with a walker. I had the doctor reduce the Baclofen dose in my pump, in small increments. No matter how much he reduced, there was still no change. About six months ago, my pump began to give me problems such as swelling and tenderness to the touch. I spent two visits in the hospital within three months, for the same problem. I was told they couldn't find anything wrong with the pump, but each time they put me on intravenous antibiotics and the swelling went down and tenderness diminished. This led me to believe that there was an infection somewhere. After my pump kept swelling and the neurosurgeon's nurse told me that the pump is a foreign object in your body, and the body is constantly trying to reject it, and some patients pumps were rejected totally outside of the body, I decided to have my pump removed. My oral Baclofen was started up again, and I was weaned off the pump. I then began to have more tone, and am able to stand better. I'm not able to walk yet, but I have some inpatient physical therapy coming up once I get this pump removed. I tried once to have the pump removed but was unsuccessful. They could not get an IV in. They tried from my feet to my exterior Jugular. Once I get over this bladder infection, they will try again. Wish me luck. Naomi C-4 Quadriplegic, since July 2, 2005 Due to Transverse Myelitis -- Can love help you live longer? Find out nowhttp://personals.aol.com/articles/2009/02/18/longer-lives-through-relationships/?ncid=emlweuslove0001.
[TMIC] IV Hell
I learned to aggressively quiz anyone who approached me for blood. I required the phlebotomist. I remember being told once there was none and it would cost more. I also remember telling someone they had one stick and no more. I was already in the most wretched pain from TM and paralyzed, but promised to strike anyone who stuck me more than once unsuccessfully. When I was transferred from one hospital to another they left my IV in and the second hospital said the line had gone dry and that they had to do it again. I developed a blood clot because hospital # 2 took weeks to get my leg machine ( hospital # 1 brought in machines that they put in the bed to move my paralyzed legs) and so spent 9 months on blood thinners and getting stuck. horrific. My one childhood nightmare was being held by my mother while monsters in white coats sucked blood from my neck. This was real life, interpreted through vampire movies. They took blood from my jugular because they couldn't get it elsewhere. I have no clue what merited that or what was wrong with me I was only hospitalized to have my tonsils removed and maybe this wasn't even a hospitalization, but the trauma made me a very activist patient. Just to say--- I hear you. Akua --
[TMIC] A little update on the little girl
Just a note to give you an update on the little girl. Instead of 8 years old, she is 13! Gosh, the last time I saw her she was such a little thing. I would see her almost every school morning walking to school but I forget that I've not worked and have had TM for over 4 years!!! Anyway, the doctors gave her chemo at 5:30 today because they thought it would help make the MRI clearer. I will keep you updated as I hear. Thank you for the prayers.01_tile.jpg01_side.gif
