Re: [TMIC] That banding feeling
About the banding. I actually had banding pains as early as age 19. 5 years later I got left foot drop. 10 more years I got right drop followed by lose of right leg. The banding that came after tm was far more painful. Took sleep and energy and seemed to never end. --Original Message-- From: laura.eich...@gmail.com To: tmic-list@eskimo.com Subject: [TMIC] That banding feeling Sent: Aug 10, 2009 11:55 PM Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura Sent from my Verizon Wireless BlackBerry
RE: [TMIC] That banding feeling
Hi Laura - I was diagnosed with TM in 2002, then MS in 2008. I never experienced any banding (?) Bernie From: laura.eich...@gmail.com [mailto:laura.eich...@gmail.com] Sent: Monday, August 10, 2009 11:56 PM To: tmic-list@eskimo.com Subject: [TMIC] That banding feeling Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
Re: [TMIC] That banding feeling
*Subject:* [TMIC] That banding feeling Thank you everyone for your replies. I recently got to thinking about that banding feeling that I had experienced early on (for me it was completely around the bra line and felt as if I had a belt on way too tight there) and wondered if there was a relationship between those that had that and developed MS. I thought that maybe the banding was unique to MS but apparently I was wrong. :-) I am thankful that my experience with the banding was just weird and uncomfortable, not painful as some of you felt. This TM business is some weird stuff, isn't it? Thanks again! Laura
Re: [TMIC] question
It is something we all have to live with; something we al l have to work out with pain and suffering. Lol. When my bowel is full, I can't empty my bladder either! Learned a long time ago what Dr. Kerr meant by digital disimpaction! I find mineral oil, one Tbs., taken orally along with prunes every other day works nicely. F
Re: [TMIC] healthcare
Me too! Cindy, I was told I would be in the position you are now.Catherine From: Cindy McLeroy cindymcle...@socal.rr.com To: bobby jim elbobber...@earthlink.net; lynnemye...@yahoo.com; tmic-list@eskimo.com; balmat...@aol.com Sent: Saturday, August 8, 2009 1:20:51 AM Subject: Re: [TMIC] healthcare I was on LTD from my company and covered by the company insurance. After 2 years on LTD SSDI I became eligible for Medicare part B. I received the letters from SSDI to complete for part B. Since I already had coverage, I declined the medicare. About 3 years later my company was challenged by Medicare on who was the primary provider and who was secondary. The end result was Medicare was primary. All of those folks, including me, from my company that had declined the medicare now have to pay a 10% per year penalty because we did not take medicare when it was first available to us. For me, that is $130 a month instead of the $98 that others pay. Every year there is an additional 10% penalty. What is intersting here is that almost everyone of us has a different story of when and how medicare begins and what type of coverage we get. What really is the straight skinny??? I'm beginning to wonder who will really tell us the truth. Cindy McLeroy - Original Message - From: bobby jim To: lynnemye...@yahoo.com ; tmic-list@ESKIMO.COM ; balmat...@aol.com Sent: Friday, August 07, 2009 7:47 PM Subject: Re: [TMIC] healthcare Me as well. When I applied for social security I waived the Medicare part as I was-is covered by my own HMO plan.The woman taking in my claim said 'no prob'. BobbyJim From: balmat...@aol.com To: lynnemye...@yahoo.com ; tmic-list@eskimo.com Sent: Friday, August 07, 2009 6:30 PM Subject: Re: [TMIC] healthcare Lynne, Can I clarify? You are on Medicare part A and aren't paying for it? But, when you become 65 and you will then start paying what you would have when you were originally eligible? I declined since I had insurance, but didn't realize this was an option to do. Thanks, Barbara A -Original Message- From: lynne myers lynnemye...@yahoo.com To: tmic tmic-list@eskimo.com Sent: Fri, Aug 7, 2009 6:21 am Subject: RE: Fwd: [TMIC] healthcare I have been on Medicare for about 6 years now and it is also my secondary. Because my husband still works and we have insurance through there that is considered our primary. At this point I only have part A coverage which has paid for nothing. Part B would not be paying anything now if I did have it so it was recommended that I wait until I turn 65 to subscribe. At that time I will start paying at the rate it was when I first became eligible because of the fact that I have private insurance now. Lynne --- On Thu, 8/6/09, Lori Biehler lbieh...@earthlink.net wrote: From: Lori Biehler lbieh...@earthlink.net Subject: RE: Fwd: [TMIC] healthcare To: 'Todd Tarno' toddtm2...@sbcglobal.net, tmic-list@eskimo.com, 'Laurie Zissimos' lziss...@aol.com Date: Thursday, August 6, 2009, 3:23 PM Sorry Todd, I have been on Medicare for 10 years and it is my secondary. Not sure of your circumstance, but it is not ALWAYS primary. I am on SSDI and am not over 65. Lori From:Todd Tarno [mailto:toddtm2...@sbcglobal.net] Sent: Thursday, August 06, 2009 3:12 PM To: tmic-list@eskimo.com; Laurie Zissimos Subject: Re: Fwd: [TMIC] healthcare Hi Laurie, I found out the hard way that Medicare is ALWAYS primary. I too, tried to keep my COBRA Medicare, but when I went to get a MRI, they told me that Medicare was primary. When I tried to get back my COBRA payments, they wouldn't return the payments and didn't want to pay for my medications for that month. So, I had to tell them either return my COBRA payments or pay for my medications, which are over $3,000 a month. They paid for the medications. Thanks goodness. I don't remember what Part B is. I do think you will need Part D for medications. Since you already using Blue Cross and you like them. I would stay with them with Part D. I would talk to Blue Cross to see they can help you find a plan that works for you. Hope this helps a little, Todd in CC, TX --- On Tue, 8/4/09, Laurie Zissimos lziss...@aol.com wrote: From:
[TMIC] URGENT update
Date changed SUNDAY August 16th 2:30 SOUTHwest Virginia TMA Support Group (Transverse Myelitis,Devics, MS, Optic Neuritis etc. welcome) SUNDAY August 16 2:30 p.m. Shoney's Restaurant Dublin, Va just of I 81 exit 98 Holiday Inn Express, Hampton Inn, Comfort Inn next door if your need to spend the night. Please feel free to come NO MATTER what area you live in!!! Tennessee, North Carolina, West Virginia are all near the crossroads of I 77 and I 81!!! MUST RSVP now to dho.d...@comcast.net or I will cancel for lack of response. Feel free to forward this to anyone who needs to know. Drema Hagee ODell (facebook) 540-230-6402
Re: [TMIC] That banding feeling
The banding came on immediately with the TM and has never left. Without the meds, it is excruciatingly painful and just heads south to my toes. Funny how you can hurt so bad and 'not feel'??? Explain that to someone?? ::)) Gosh, I'm so happy you all are in my life..Jeanne ---Original Message--- From: laura.eich...@gmail.com Date: 8/10/2009 10:56:05 PM To: tmic-list@eskimo.com Subject: [TMIC] That banding feeling Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura 01_tile.jpg01_side.gif
[TMIC] When Highlanders get bored with their sheep - AMAZING! NOT TMIC BUT WORTH WATCHING!
If you never look at another email, check this out! Amazing for sure!!! Highlanders get bored with their sheep! No, this is not dirty. your kids, wife, girlfriend, grandmother, grandfather, or whatever can view this. p.s. These guys are not retired electricians either! http://link.brightcove.com/services/player/bcpid1137883380?bctid=17075685001 looks like the dogs had a good time!! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.392 / Virus Database: 270.13.39/2275 - Release Date: 08/01/09 09:38:00 Get your vacation photos on your phone! Click here. Windows Live: Keep your life in sync. Check it out. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.392 / Virus Database: 270.13.45/2287 - Release Date: 08/07/09 06:22:00
[TMIC] Ins. Questions - still??
I know we've gone over this before but I sure could use some help. Jack and I are on Medicare (me, Disability but I have my Medicare card) with AARP, Part L, and we really need some help with our prescriptions. I've read a lot of what has been written and don't understand some of it. What I would like is to hear from those of you who have a good RX plan that you feel is fair and that Jack and I might get to go with our other plans. I've checked on the AARP and the one I think might work is the 'middle' plan that is about $30+ a month. I want one that I can get 3 months at a time so I don't have to keep having it refilled. Does all of this make sense??? Jeanne01_tile.jpg01_side.gif
Re: [TMIC] question
Hey Kevin, Just think about the extra weight you're caring around when you're constipated. LOL Also, remember that it's help to drink a lot of water and to be able to do standing exercises. I understand this is harder for most of us, but any exercises is better than none. I have found that any exercises with the legs even in a chair and even better if you able to stand up does help with a good bowel movement. May we'll feel better today, Todd in CC, TX --- On Sun, 8/9/09, Kevin Wolfthal wolft...@optonline.net wrote: From: Kevin Wolfthal wolft...@optonline.net Subject: [TMIC] question To: tmic-list@eskimo.com Date: Sunday, August 9, 2009, 4:16 PM Has anyone ever noticed that constipation, or not moving your bowels regularly for any reason, can make other symptoms worse, such as spasms? Kevin
Re: [TMIC] When Highlanders get bored with their sheep - AMAZING! NOT TMIC BUT WORTH WATCHING!
Loved it!!! Always send stuff like that - we can use a lift!!! janice - Original Message - From: jrushton To: tmic Sent: Tuesday, August 11, 2009 11:42 PM Subject: [TMIC] When Highlanders get bored with their sheep - AMAZING! NOT TMIC BUT WORTH WATCHING! If you never look at another email, check this out! Amazing for sure!!! Highlanders get bored with their sheep! No, this is not dirty. your kids, wife, girlfriend, grandmother, grandfather, or whatever can view this. p.s. These guys are not retired electricians either! http://link.brightcove.com/services/player/bcpid1137883380?bctid=17075685001 looks like the dogs had a good time!! No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.392 / Virus Database: 270.13.39/2275 - Release Date: 08/01/09 09:38:00 Get your vacation photos on your phone! Click here. Windows LiveT: Keep your life in sync. Check it out. No virus found in this incoming message. Checked by AVG - www.avg.com Version: 8.5.392 / Virus Database: 270.13.45/2287 - Release Date: 08/07/09 06:22:00
[TMIC] happy you are in my life
Jeanne, I am so happy you are in my life too. The rest of our group included! I care so much about you all. Catherine From: jrushton jrush...@columbiaenergyllc.com To: laura.eich...@gmail.com; tmic tmic-list@eskimo.com Sent: Tuesday, August 11, 2009 11:08:09 PM Subject: Re: [TMIC] That banding feeling The banding came on immediately with the TM and has never left. Without the meds, it is excruciatingly painful and just heads south to my toes. Funny how you can hurt so bad and 'not feel'??? Explain that to someone?? ::)) Gosh, I'm so happy you all are in my life..Jeanne ---Original Message--- From: laura.eich...@gmail.com Date: 8/10/2009 10:56:05 PM To: tmic-list@eskimo.com Subject: [TMIC] That banding feeling Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
Re: [TMIC] That banding feeling
I've had TM for five years and don't expect an MS diagnosis. I've had the banding trom the beginning. During one of my steroid IV's (first five days) I rang for help and told the nurse I couldn't breath and something was squeezing my chest. It was painful and I asked her if I could be having a heart attack. I still get banding on a regular basis, however, I don't panic, I work harder at breathing and hope its time for some Baclofin. Patti - Michigan laura.eich...@gmail.com wrote: Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
[TMIC] Update on Jim
Wish I had something more definite to tell but this is what I know for sure. Jim is still in the Select Speciality hospital in Pontiac,Mi. They are telling me he is almost definitely going to be transferred to Marlette Hospital which is only 22 miles from home instead of about 65. He has an infection which they are monitoring. I am pulling for this as I have very good feelings about this place. Please say a few more prayers for him as we will continue to for each of you. Our love, carol and jim TIAD
Re: [TMIC] That banding feeling
I can't figure out why I only get some of the TMIC notes??? Anyone else have the same problem? Jeanne ---Original Message--- From: pjv1...@chartermi.net Date: 8/11/2009 6:38:33 PM To: laura.eich...@gmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] That banding feeling I've had TM for five years and don't expect an MS diagnosis. I've had the banding trom the beginning. During one of my steroid IV's (first five days) I rang for help and told the nurse I couldn't breath and something was squeezing my chest. It was painful and I asked her if I could be having a heart attack. I still get banding on a regular basis, however, I don't panic, I work harder at breathing and hope its time for some Baclofin. Patti - Michigan laura.eich...@gmail.com wrote: Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura 01_tile.jpg01_side.gif
Re: [TMIC] Ins. Questions - still??
Oh, that would be so good, Gunny! We have them for our supplemental but how and what do I do to sign up for what you have??? Also, my sis-in-law works at a clinic and they are saving the printer cartridges for me. She said she has a lot and I'll be seeing her this next weekend so you'll be getting a package again!! Hooray! Jeanne ---Original Message--- From: bgunny7...@aol.com Date: 8/11/2009 6:02:47 PM To: jrush...@columbiaenergyllc.com Subject: Re: [TMIC] Ins. Questions - still?? I belong to AARP, and all I pay is $4.00 for generic, and $6.00 for name brands no matter what the drug. 01_tile.jpg01_side.gif
[TMIC] Wheelchair questions
I am wondering who uses Power Wheelchairs on the TMIC? I cannot use a manual wheelchair because my hands are bad. Would you mind posting which chair you use, what you like or don't like about it, is it good for indoor or outdoor use or both? I am considering a Pride Go-Chair mainly because it is small and comes apart for travel. (note: this is not the same as a Go-Go Scooter) Also, is anyone familiar with the wheelchair provider Maxim Mobility in New Haven, CT? Good or bad? Thanks! Kevin
Re: [TMIC] Wheelchair questions
Invacare Ranger II - rear wheel, loved this chair and I was more mobile then so I ran that thing all over and at 6-7mph. Quickie S-525 - rear wheel, okay, goes as fast as I do now anyway - Original Message - From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Tuesday, August 11, 2009 9:55 PM Subject: [TMIC] Wheelchair questions I am wondering who uses Power Wheelchairs on the TMIC? I cannot use a manual wheelchair because my hands are bad. Would you mind posting which chair you use, what you like or don't like about it, is it good for indoor or outdoor use or both? I am considering a Pride Go-Chair mainly because it is small and comes apart for travel. (note: this is not the same as a Go-Go Scooter) Also, is anyone familiar with the wheelchair provider Maxim Mobility in New Haven, CT? Good or bad? Thanks! Kevin
Re: [TMIC] Update on Jim
Hi Carol, Late last night when I was reading the posts I was just about to ask if anybody had heard from Carol regarding Jim's current condition. You must have known we were thinking of you. Carol, is this infection the same one he has had for a while, or is this one new? You and Jim are in my prayers each day. I hope that Jim is transferred to Marlette Hospital - you seem to feel good about this hospital, and it is definitely closer to home which will be a positive thing for you. Carol, please remember how very important it is to take care of yourself too. My love and prayers to both you and Jim. Linda ***TIAD*** - Original Message - From: cjb...@aol.commailto:cjb...@aol.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Tuesday, August 11, 2009 6:42 PM Subject: [TMIC] Update on Jim Wish I had something more definite to tell but this is what I know for sure. Jim is still in the Select Speciality hospital in Pontiac,Mi. They are telling me he is almost definitely going to be transferred to Marlette Hospital which is only 22 miles from home instead of about 65. He has an infection which they are monitoring. I am pulling for this as I have very good feelings about this place. Please say a few more prayers for him as we will continue to for each of you. Our love, carol and jim TIAD --
Re: [TMIC] That banding feeling
I had that banding feeling when I first got diagnosed 5 years ago also. But with my second attack in January I didn't have it thank God! --- On Tue, 8/11/09, pjv1...@chartermi.net pjv1...@chartermi.net wrote: From: pjv1...@chartermi.net pjv1...@chartermi.net Subject: Re: [TMIC] That banding feeling To: laura.eich...@gmail.com, tmic-list@eskimo.com Date: Tuesday, August 11, 2009, 6:38 PM I've had TM for five years and don't expect an MS diagnosis. I've had the banding trom the beginning. During one of my steroid IV's (first five days) I rang for help and told the nurse I couldn't breath and something was squeezing my chest. It was painful and I asked her if I could be having a heart attack. I still get banding on a regular basis, however, I don't panic, I work harder at breathing and hope its time for some Baclofin. Patti - Michigan laura.eich...@gmail.com wrote: Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
Re: [TMIC] hoping and praying for All
Rebecca, this is such great news. Please let Dennis know that he is in our thoughts and prayers daily. Keep us updated as you are able. (and thank you for praying for all of us - we'll take all the prayers we can get Linda - Original Message - From: jrushtonmailto:jrush...@columbiaenergyllc.com To: Rebeccamailto:wrabal...@gt.rr.com ; tmicmailto:tmic-list@eskimo.com Sent: Monday, August 10, 2009 9:03 PM Subject: Re: [TMIC] hoping and praying for All You and Dennis are going in my Prayer Pot, Rebecca, and yes, you have a family of friends here that are a blessed group of people. Jeanne in Dayton, WA ---Original Message--- From: Rebeccamailto:wrabal...@gt.rr.com Date: 8/10/2009 9:48:37 AM To: Undisclosed-Recipient:,mailto:Undisclosed-Recipient:, Subject: [TMIC] hoping and praying for All I received so many e-mails after I asked for opinions and that is what I got.After thinking and reading all of the replies I new we were not doing anything in a hurry. As I am writing to you that Dennis is still in the Hospital but improving. Nothing more is being said about amputation. They now have 2 wound vaccs and it is doing the job. I am so proud of Dennis. I feel he is an inspiration to so many. I read all the mail and there are so many of you that are more than a friend on cyberspace. I pray for all of you daily. I will keep you posted . Rebecca Emoticon1.gif01_side.gif01_tile.jpg
Re: [TMIC] That banding feeling
Hi Jill, just curious. You had TM for 5 years and then had a second attack in January? Do you have another autoimmune disease too? Glad to hear you didn't have the banding with the 2nd attack - not too happy that you HAD a 2nd attack, though Linda - Original Message - From: Jill Zmailto:jillybean60...@yahoo.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Tuesday, August 11, 2009 8:53 PM Subject: Re: [TMIC] That banding feeling I had that banding feeling when I first got diagnosed 5 years ago also. But with my second attack in January I didn't have it thank God! --- On Tue, 8/11/09, pjv1...@chartermi.netmailto:pjv1...@chartermi.net pjv1...@chartermi.netmailto:pjv1...@chartermi.net wrote: From: pjv1...@chartermi.netmailto:pjv1...@chartermi.net pjv1...@chartermi.netmailto:pjv1...@chartermi.net Subject: Re: [TMIC] That banding feeling To: laura.eich...@gmail.com, tmic-list@eskimo.com Date: Tuesday, August 11, 2009, 6:38 PM I've had TM for five years and don't expect an MS diagnosis. I've had the banding trom the beginning. During one of my steroid IV's (first five days) I rang for help and told the nurse I couldn't breath and something was squeezing my chest. It was painful and I asked her if I could be having a heart attack. I still get banding on a regular basis, however, I don't panic, I work harder at breathing and hope its time for some Baclofin. Patti - Michigan laura.eich...@gmail.comhttp://us.mc343.mail.yahoo.com/mc/compose?to=laura.eich...@gmail.com wrote: Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
Re: [TMIC] That banding feeling
Janet, I only have TM too - thank goodnessNo problems. I think what you are talking about with the razor-sharp pain is nerve pain. There is stuff out there that your doc's can help you with - you just have to bug them with it.Hope things get a lot better for you. Janice - Original Message - From: Janet Dunn To: laura.eich...@gmail.com ; tmic-list@eskimo.com Sent: Monday, August 10, 2009 11:47 PM Subject: RE: [TMIC] That banding feeling Hi I just have TM. Ha, just have. What a thing to say. I have TM. And I have no evidence of MS or anything else. And the banding has been helped by lyrica. But the burning/razor blade feeling has not been helped. And my legs ache. Like chewing on a piece of tinfoil ache. All the time. Drives me crazy. Glad that you only have a very mild case of TM. I was told by a neurologist in Vancouver that if you are going to have another TM attack it will occur within 5 years. This is my 5 year anniversary month. Yay me. Janet From: laura.eich...@gmail.com [mailto:laura.eich...@gmail.com] Sent: August 10, 2009 8:56 PM To: tmic-list@eskimo.com Subject: [TMIC] That banding feeling Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura
Re: [TMIC] That banding feeling
Okay, I have decided that I don't really have any banding. I have a pressure feeling about my waist, but no pain. I am really for you all that have the pain - surely there is something a doc can do to help relieve this.Does anyone out there get relief from the banding pain - any meds? Janice - Original Message - From: laura.eich...@gmail.com To: tmic-list@eskimo.com Sent: Tuesday, August 11, 2009 9:07 AM Subject: Re: [TMIC] That banding feeling Subject: [TMIC] That banding feeling Thank you everyone for your replies. I recently got to thinking about that banding feeling that I had experienced early on (for me it was completely around the bra line and felt as if I had a belt on way too tight there) and wondered if there was a relationship between those that had that and developed MS. I thought that maybe the banding was unique to MS but apparently I was wrong. :-) I am thankful that my experience with the banding was just weird and uncomfortable, not painful as some of you felt. This TM business is some weird stuff, isn't it? Thanks again! Laura
Re: [TMIC] That banding feeling
How do you know that you only get some of the messages? Maybe I don't get all of mine either. Janice - Original Message - From: jrushton To: pjv1...@chartermi.net ; tmic Sent: Wednesday, August 12, 2009 5:56 AM Subject: Re: [TMIC] That banding feeling I can't figure out why I only get some of the TMIC notes??? Anyone else have the same problem? Jeanne ---Original Message--- From: pjv1...@chartermi.net Date: 8/11/2009 6:38:33 PM To: laura.eich...@gmail.com; tmic-list@eskimo.com Subject: Re: [TMIC] That banding feeling I've had TM for five years and don't expect an MS diagnosis. I've had the banding trom the beginning. During one of my steroid IV's (first five days) I rang for help and told the nurse I couldn't breath and something was squeezing my chest. It was painful and I asked her if I could be having a heart attack. I still get banding on a regular basis, however, I don't panic, I work harder at breathing and hope its time for some Baclofin. Patti - Michigan laura.eich...@gmail.com wrote: Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura 01_side.gif01_tile.jpg
Re: [TMIC] That banding feeling
Jeanne, I have had an awful time trying to answer questions about how TM makes me feel - inside and out. I feel pain in the inside of my legs, but can't feel hot or cold on the outside! I also spasm when I have to lay back in a chair or - worse yet - when I go to the dentist, etc., and they have me lay back to clean my teeth.They have to put pillows under my legs so I don't spasm. So weird - hate it!! Janice - Original Message - From: jrushton To: laura.eich...@gmail.com ; tmic Sent: Tuesday, August 11, 2009 10:08 PM Subject: Re: [TMIC] That banding feeling The banding came on immediately with the TM and has never left. Without the meds, it is excruciatingly painful and just heads south to my toes. Funny how you can hurt so bad and 'not feel'??? Explain that to someone?? ::)) Gosh, I'm so happy you all are in my life..Jeanne ---Original Message--- From: laura.eich...@gmail.com Date: 8/10/2009 10:56:05 PM To: tmic-list@eskimo.com Subject: [TMIC] That banding feeling Those of you who got that banding feeling do you all just have TM or did you also get subsequently diagnosed with MS too? And if you did experience the banding feeling, did you experience it at the beginning of your TM (or MS) journey or somewhere down the road? :-) Just wondering if TM'ers get the banding feeling or is it only those that get MS too. I had it at the start of my TM but it went away after a month or two. I had a very mild case of TM and as of yet not diagnosed with MS. Thanks! -- Laura 01_side.gif01_tile.jpg
Re: [TMIC] Update on Jim
Our thoughts and prayers are with both of you.You two have been through so much - please take care of yourself.Jim will need you to be strong when you get him home. Janice - Original Message - From: cjb...@aol.com To: tmic-list@eskimo.com Sent: Tuesday, August 11, 2009 7:42 PM Subject: [TMIC] Update on Jim Wish I had something more definite to tell but this is what I know for sure. Jim is still in the Select Speciality hospital in Pontiac,Mi. They are telling me he is almost definitely going to be transferred to Marlette Hospital which is only 22 miles from home instead of about 65. He has an infection which they are monitoring. I am pulling for this as I have very good feelings about this place. Please say a few more prayers for him as we will continue to for each of you. Our love, carol and jim TIAD --
Re: [TMIC] Need some help please
Oh, Linda, What a spot you are in, dear one. There has got to be a doctor out there that can and will help you with your knees. The PT certainly won't hurt you and I've really raved about water therapy but when you have bone on bone, especially your knees, I just can't see that taking away the pain. Isn't there somebody out there that has a doctor with enough guts to help Linda? At least lead her in the right direction for the right provider? Quality of life is a goal for us and right now, Linda, you must be in such pain that the quality is pretty tough. I sure wish I had an answer for you. Don't give up...right back into the Prayer Pot you go...Hugs..Jeanne ---Original Message--- From: L T CHERPESKI Date: 8/11/2009 10:41:09 PM To: TM List Subject: [TMIC] Need some help please Hi everybody, I'm hoping you guys can help point me in the right direction. There are so many of us on the TM site there's just got to be someone who knows somebody with the same or similar dilemma. Most of you know that I've had Sjogrens for 20+ years (unfortunately, progressive and aggressive) and 7 yrs ago TM came into my life. I am on heavy chemo meds (Imuran and Rituxan infusions) to suppress my immune system to keep it from attacking my body. Last Sept I had a minor surgery to repair a torn meniscus in my knee, and my body went into the longest, hardest relapse I've ever had. I'm just now getting my arms and hands back - I think this is as much as I'll get this time. Almost everything else has gradually come back. My one huge problem is that my KNEES took the biggest hit - my doctors said it was because they were the weakest part of my body at the time. I have infected knees (right one to the bone) and am walking (trying) on bone on bone knees. They both need to be replaced. And I have TM, so already my walking is not that pretty. I was sent out of state to a surgeon who does a special knee replacement surgery that is less invasive. Long trip, big disappointment. He will NOT do surgery on me either because of the aftermath - said it would be like doing brain surgery due to my autoimmune diseases. Well that's fine - I have always wanted to do anything but the surgery, but was given no OTHER choices. And, I am still being given NO options. So I've done some of my own research. What about physical therapy to get my thigh and quad muscles built up so they can take some of the load off my knee joints? (I'm a fairly small person so we're not talking about losing 50 lbs and that would make things all better) Water therapy? I'm not quite sure how to get these muscles built up when my knees hurt so bad I can hardly bend them, but there has to be a way. My doctors have kind of given up on me, which at first shocked me, now I'm just really mad. Any ideas would be much appreciated. Thanks guys, Linda 01_tile.jpg01_side.gif
Re: [TMIC] Need some help please
Thanks Jeanne. Don't worry - I'm a survivor and never give up! Love that Prayer Pot of yours. Hugs, Linda - Original Message - From: jrushtonmailto:jrush...@columbiaenergyllc.com To: L T CHERPESKImailto:cherp...@msn.com ; tmicmailto:tmic-list@eskimo.com Sent: Wednesday, August 12, 2009 9:23 PM Subject: Re: [TMIC] Need some help please Oh, Linda, What a spot you are in, dear one. There has got to be a doctor out there that can and will help you with your knees. The PT certainly won't hurt you and I've really raved about water therapy but when you have bone on bone, especially your knees, I just can't see that taking away the pain. Isn't there somebody out there that has a doctor with enough guts to help Linda? At least lead her in the right direction for the right provider? Quality of life is a goal for us and right now, Linda, you must be in such pain that the quality is pretty tough. I sure wish I had an answer for you. Don't give up...right back into the Prayer Pot you go...Hugs..Jeanne ---Original Message--- From: L T CHERPESKImailto:cherp...@msn.com Date: 8/11/2009 10:41:09 PM To: TM Listmailto:tmic-list@eskimo.com Subject: [TMIC] Need some help please Hi everybody, I'm hoping you guys can help point me in the right direction. There are so many of us on the TM site there's just got to be someone who knows somebody with the same or similar dilemma. Most of you know that I've had Sjogrens for 20+ years (unfortunately, progressive and aggressive) and 7 yrs ago TM came into my life. I am on heavy chemo meds (Imuran and Rituxan infusions) to suppress my immune system to keep it from attacking my body. Last Sept I had a minor surgery to repair a torn meniscus in my knee, and my body went into the longest, hardest relapse I've ever had. I'm just now getting my arms and hands back - I think this is as much as I'll get this time. Almost everything else has gradually come back. My one huge problem is that my KNEES took the biggest hit - my doctors said it was because they were the weakest part of my body at the time. I have infected knees (right one to the bone) and am walking (trying) on bone on bone knees. They both need to be replaced. And, I have TM, so already my walking is not that pretty. I was sent out of state to a surgeon who does a special knee replacement surgery that is less invasive. Long trip, big disappointment. He will NOT do surgery on me either because of the aftermath - said it would be like doing brain surgery due to my autoimmune diseases. Well that's fine - I have always wanted to do anything but the surgery, but was given no OTHER choices. And, I am still being given NO options. So I've done some of my own research. What about physical therapy to get my thigh and quad muscles built up so they can take some of the load off my knee joints? (I'm a fairly small person so we're not talking about losing 50 lbs and that would make things all better) Water therapy? I'm not quite sure how to get these muscles built up when my knees hurt so bad I can hardly bend them, but there has to be a way. My doctors have kind of given up on me, which at first shocked me, now I'm just really mad. Any ideas would be much appreciated. Thanks guys, Linda 01_side.gif01_tile.jpg
Re: [TMIC] Wheelchair questions
Hi Kevin, Just an fyi, not sure if you are getting any help from insurance, medicare, etc. or not on this power chair.? If you are not, you may want to consider purchasing one second hand.? I've bought 2 second hand, the second only because the first one didn't have the power to pull the hills at our fairgrounds, and there are many fun events at our local fairgrounds.? You can get some really good deals on a second hand scooter.? We bought mine through private parties, but when going to a local mobility store for some new crutches he had some great used scooters, and for not any more money than I paid.? His looked newer and I was surprised.? There are so many people who get them and only use for a very short time, and some never even go out of the house.? Unless I can get insurance to pay for me, which is highly unlikely with my current?HMO,?I'll never buy new. Hugs to all, Barbara A -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Tue, Aug 11, 2009 6:55 pm Subject: [TMIC] Wheelchair questions ? I am wondering who uses Power Wheelchairs on the TMIC?? I cannot use a manual wheelchair because my hands are bad.? ? Would you mind posting which chair you use, what you like or? don't like about it, is it good for indoor or outdoor use or both?? ? I am considering a Pride Go-Chair mainly because it is small? and comes apart for travel. (note: this is not the same as a Go-Go Scooter)? ? Also, is anyone familiar with the wheelchair provider Maxim Mobility in? New Haven, CT? Good or bad?? ? Thanks!? Kevin? ?
Re: [TMIC] Need some help please
Hi Linda, I'm so sorry that your trip to the out of state surgeon proved to be a disappointment. Interesting you should ask about knee surgery and options.? I am possibly looking at a knee replacement as well.? I see the orthopedist on Friday, referred by my primary.? He said it was the end option, but to not miss the appointment as it was bone on bone as well.? I had a torn meniscus years ago, and they say that's very typical to need more surgery later on down the road. Anyway, my son and daughter in-law just got back from a trip to visit her aunt.? Her aunt had a knee replacement done a while back, and said it wasn't pleasant, to say the least.? She still suffers to this day and needs one in the other knee?and won't do it.? Her doctor injects her knee every 3 months with cartilage I believe.? Now, I don't know anything else about it, just that she'd rather do this.? I don't know if this is an option for you, but you can inquire about it.? Hugs, Barbara A -Original Message- From: L T CHERPESKI cherp...@msn.com To: TM List tmic-list@eskimo.com Sent: Tue, Aug 11, 2009 8:38 pm Subject: [TMIC] Need some help please Hi everybody, ? I'm hoping you guys can help point me in the right direction.? There are so many of us on the TM site there's just got to be someone who knows somebody with the same or similar dilemma. ? Most of you know that I've had Sjogrens for 20+ years (unfortunately, progressive and aggressive) and 7 yrs ago TM came into my life.? I am on heavy chemo meds (Imuran and Rituxan infusions) to suppress my immune system to keep it from attacking my body.? Last Sept I had a minor surgery to repair a torn meniscus in my knee, and my body went into the longest, hardest relapse I've ever had.? I'm just now getting my arms and hands back - I think this is as much as I'll get this time.? Almost everything else has gradually come back.? My one huge problem is that my KNEES took the biggest hit - my doctors said it was because they were the weakest part of my body at the time.? I have infected knees (right one to the bone) and am walking (trying) on bone on bone knees.? They both need to be replaced.? And, I have TM, so already my walking is not that pretty. ? I was sent out of state to a surgeon who does a special knee replacement surgery that is less invasive.? Long trip, big disappointment.? He will NOT do surgery on me either because of the aftermath? - said it would be like doing brain surgery?due to my autoimmune diseases.? Well that's fine - I have always wanted to do anything but the surgery, but was given no OTHER choices. ? And, I am still being given NO options.? So I've done some of my own research.? What about physical therapy to get my thigh and quad muscles built up so they can take some of the load off my knee joints??(I'm?a fairly small person so we're not talking about losing 50 lbs and that would make things all better) ?Water therapy?? I'm not quite sure how to get these muscles built up when my knees hurt so bad I can hardly bend them, but there has to be a way.? My doctors have kind of given up on me, which at first shocked me, now I'm just really mad. ? Any ideas would be much appreciated. ? Thanks guys, ? Linda ? ?
