[TMIC] New to TM
Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
Re: [TMIC] New to TM
Welcome!! We all hate the circumstances, but we welcome you and your husband with open arms. Some of the more knowledgeable of the TM'ers I am sure will weigh in on your question of support group for spouses. On the other hand, you both can and should be a part of us too.We are full of support and much information of meds we are taking, etc.We also make a good sounding board when frustration sets in. With both of you having a positive outlook, things will go much better for you. We are always here for both of you. Janice, in Missouri From: Emily Sent: Thursday, September 16, 2010 11:10 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
RE: [TMIC] New to TM
Welcome to our site. I am sorry it took TM to find us. I too have Idiopathic TM. I was DX in June of 2008. I was in the hospital for 5 weeks and was given Prednisone with there and was sent home with a script of oral prednisone to start weaning. The TM affected my legs and of course the bladder and bowels. I had PT while there and then continued when I got home. I have since progressed to where I am able to get around the house with walker/cane, but do need a walker to my electric scooter when I go to any activity that requires a lot of walking. This group is also for the spouses or care givers. There are no questions that you cannot ask. We are all here for you and your hubby. Take care and give our best to your hubby. Patti - Wisconsin From: Emily [mailto:em...@telephonelady.com] Sent: Thursday, September 16, 2010 11:11 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
Re: [TMIC] New to TM
Welcome, again. We are from all over the earth. I am in the Middle East but have a home in Queens, NY. This is a great place and everyone is helpful. Dalton From: Patricia Cooley patticoole...@gmail.com Date: Thu, 16 Sep 2010 11:59:16 -0500 To: em...@telephonelady.com, tmic-list@eskimo.com Subject: RE: [TMIC] New to TM Resent-From: tmic-list@eskimo.com Resent-Date: Thu, 16 Sep 2010 09:59:51 -0700 Welcome to our site. I am sorry it took TM to find us. I too have Idiopathic TM. I was DX in June of 2008. I was in the hospital for 5 weeks and was given Prednisone with there and was sent home with a script of oral prednisone to start weaning. The TM affected my legs and of course the bladder and bowels. I had PT while there and then continued when I got home. I have since progressed to where I am able to get around the house with walker/cane, but do need a walker to my electric scooter when I go to any activity that requires a lot of walking. This group is also for the spouses or care givers. There are no questions that you cannot ask. We are all here for you and your hubby. Take care and give our best to your hubby. Patti - Wisconsin From: Emily [mailto:em...@telephonelady.com] Sent: Thursday, September 16, 2010 11:11 AM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is ³taking it one day at a time². My question is thisis there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image.jpg
RE: [TMIC] New to TM
Hi EmilyI head up the NJ support group and we have had 4 meetings so far. I encourage spouses and or parents to join the TM'rs. I think it is very important for them to come to understand the problems we face every minute of every day with our condition.I guess what i am saying is that we incorporate family members within our group. Rob in New Jersey From: Emily [mailto:em...@telephonelady.com] Sent: Thursday, September 16, 2010 12:11 PM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
Re: [TMIC] New to TM
Hi Emily, a very warm welcome to both you and your hubby. You have come to the right place for support, information about meds, symptoms and pretty much anything else. We talk freely about anything and everything. Most of us have experienced it or are currently. We have a lot of spouses/caregivers who are a very important part of this TM family. It's great to hear your hubby has a positive outlook. Determination will be very helpful in his recovery. Again, welcome, and keep posting so we know how both of you are doing. Linda - Original Message - From: Emilymailto:em...@telephonelady.com To: tmic-list@eskimo.commailto:tmic-list@eskimo.com Sent: Thursday, September 16, 2010 10:10 AM Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
Re: [TMIC] New to TM
This is BobbyJim in Elvisland (a.k.a. Memphis, Tennessee) (no, am not a suthnr, just happen to live here --long story). Am one of the old timers in this group, September '97, when me missus came down with TM at T-8. Neither one of us knew what the heck that was... but we learned fast. Da poore gal had a second attack in Feb 99 and her then neuro changed her dx to MS. She's been on Avonex ever since and today, almost 475 shots later (peri$$$h the co$t), one can hardly tell that she's afflicted. So ask away, we're here to help. BobbyJim (a.k.a. Bobberino) -- Where in Pennsylvania are you...??? My father lived in Wilmington, Delaware for many many years. From: Emily To: tmic-list@eskimo.com Sent: Thursday, September 16, 2010 11:10 Subject: [TMIC] New to TM Hi Everyone, My husband has recently (September 2nd) been diagnosed with Idiopathic TM. He was treated at Pennsylvania Hospital under the care of a team of Neurologists. He was given mega doses of Prednisone and is currently weaning with oral prednisone. He was discharged from the hospital last Thursday and he is now working hard at an acute rehabilitation center (3-5 hours each day). He has a very positive outlook and is taking it one day at a time. My question is this..is there a support group for spouses of TM? Emily Life is not measured by the number of breaths that we take but by the moments that take our breath away. image001.jpg
Re: [TMIC] New to TM
Hi Emily, This place is for people with TM, spouses, family members, caregivers, etc. Sorry you have to join our family, but this is a great place for information, support, love, and understanding. Some of us have been on here for many years and it is a wonderful site. Peace, Bernie in Texas
[TMIC] New to TM
Thank you to everyone who responded to my initial email. It is wonderful to know that I am not in this alone. I guess misery likes company ;) Let me tell you a little about how we came to find out that my husband has TM. At the beginning of August my husband was getting constipated which is something that NEVER happens he is like clockwork each morning. After playing with this for about 1 week taking laxatives, etc. he began to get a numbing feeling in his lower left abdomen. This scared him so he made an appointment with our regular family doctor. Our doctor sent him for a cat scan of the digestive system and it was negative. Then he sent him for a colonoscopy on August 25th. On the morning of the colonoscopy he couldn't get out of bed because his left leg was totally numb. I had a walker in the garage from a previous broken ankle so I went and got him the walker and I took him to get the colonoscopy. This frightened me so while I was waiting for him to come out of recovery I called our family doctor and told him about the total numb left leg and he said to bring him into the office the following day. The family doctor said he wanted him to go for an MRI of the lower lumbar so the following Monday (August 30th). While we were waiting for that Monday to roll around the numbing got worse and he lost all use of the leg he described as dead and he was also antsy..he couldn't sit still or lay down..he seemed very agitated. During the early hours of August 30th he fell in the bedroom trying to use the urinal while holding onto the walker. I couldn't get him off the floor nor could he help me because of the dead leg so I called 911. He was taken to our local hospital's emergency ward and they cat scanned his head looking for a stroke but the cat scan was negative showing no signs of stroke. He was discharged at 8AM on August 30th and I took him directly to the MRI he was scheduled for that day. The MRI showed some stenosis in the lower lumbar region but not enough to cause this kind of numbness so our family doctor got us an emergency appointment with a neurosurgeon on Tuesday August 31st. He was admitted to the Pennsylvania Hospital in Philadelphia right from the doctor's office and additional MRIs of the thoracic spine were taken and then another one with contrast and it was in these MRIs where they could see abnormalities (lesions). He was then turned over to a team on neurologists and more tests (cat scans, blood tests, MRIs, and spinal taps) were taken. He was also tested for every known viral and/or immune disease known to mankind to include Lupus, Lyme, Herpes, HIV, Hepatitis, just to name a few. On September 3rd he was diagnosed with Idiopathic TM and that evening he was given 1000 mg of prednisone. He had 5 of these treatments and then released to an Acute Rehabilitation Hospital which is where he is right now and has been since September 9th. He is currently being weaned orally off of the steroids. He is showing progress but it is slow. He does now have the ability to lift his left leg but it is still totally numb and he must look down to see where his foot his before taking a step with the walker and assistance from the PT staff. He has no pain and the antsiness seems to have disappeared. I am now in the process of getting our toilets in our home changed to the higher off the ground toilets with grab bars installed on either side of the toilet and grab bars installed inside the shower. I am also getting the glass shower doors to our walk in shower taken down and I will replace them with a heavy duty shower curtain. Luckily we live in a one story home on a concrete slab and there are no steps that he will have to deal with. That's my story...and I am sticking to it..LOL I am sure it is similar to many others in this group. I don't like how I found all of you but I must say that I am glad you are right here at my keyboard and over the next few months I am sure I will have lots of questions. Thank you so much for being here even though it isn't in the best of circumstances of meeting people. Love to all of my new TM family..God bless all of you, Emily Meyers Columbus, New Jersey
Re: [TMIC] New to TM
Re: Fw: Re: [TMIC] another wonderful nightEmily, Your story is very similar to many of us. Tell your husband we were all there and with lots of work, he will most likely improve. We never know how much improvement there will be, but even after years of TM, some still find improvement. Never give up and never forget we are right here for you both. We never get tired of questions or any communication you want to make. Janice From: Emily Sent: Thursday, September 16, 2010 10:30 PM To: tmic-list@eskimo.com Subject: [TMIC] New to TM Thank you to everyone who responded to my initial email. It is wonderful to know that I am not in this alone. I guess misery likes company ;) Let me tell you a little about how we came to find out that my husband has TM. At the beginning of August my husband was getting constipated which is something that NEVER happens he is like clockwork each morning. After playing with this for about 1 week taking laxatives, etc. he began to get a numbing feeling in his lower left abdomen. This scared him so he made an appointment with our regular family doctor. Our doctor sent him for a cat scan of the digestive system and it was negative. Then he sent him for a colonoscopy on August 25th. On the morning of the colonoscopy he couldn't get out of bed because his left leg was totally numb. I had a walker in the garage from a previous broken ankle so I went and got him the walker and I took him to get the colonoscopy. This frightened me so while I was waiting for him to come out of recovery I called our family doctor and told him about the total numb left leg and he said to bring him into the office the following day. The family doctor said he wanted him to go for an MRI of the lower lumbar so the following Monday (August 30th). While we were waiting for that Monday to roll around the numbing got worse and he lost all use of the leg he described as dead and he was also antsy..he couldn't sit still or lay down..he seemed very agitated. During the early hours of August 30th he fell in the bedroom trying to use the urinal while holding onto the walker. I couldn't get him off the floor nor could he help me because of the dead leg so I called 911. He was taken to our local hospital's emergency ward and they cat scanned his head looking for a stroke but the cat scan was negative showing no signs of stroke. He was discharged at 8AM on August 30th and I took him directly to the MRI he was scheduled for that day. The MRI showed some stenosis in the lower lumbar region but not enough to cause this kind of numbness so our family doctor got us an emergency appointment with a neurosurgeon on Tuesday August 31st. He was admitted to the Pennsylvania Hospital in Philadelphia right from the doctor's office and additional MRIs of the thoracic spine were taken and then another one with contrast and it was in these MRIs where they could see abnormalities (lesions). He was then turned over to a team on neurologists and more tests (cat scans, blood tests, MRIs, and spinal taps) were taken. He was also tested for every known viral and/or immune disease known to mankind to include Lupus, Lyme, Herpes, HIV, Hepatitis, just to name a few. On September 3rd he was diagnosed with Idiopathic TM and that evening he was given 1000 mg of prednisone. He had 5 of these treatments and then released to an Acute Rehabilitation Hospital which is where he is right now and has been since September 9th. He is currently being weaned orally off of the steroids. He is showing progress but it is slow. He does now have the ability to lift his left leg but it is still totally numb and he must look down to see where his foot his before taking a step with the walker and assistance from the PT staff. He has no pain and the antsiness seems to have disappeared. I am now in the process of getting our toilets in our home changed to the higher off the ground toilets with grab bars installed on either side of the toilet and grab bars installed inside the shower. I am also getting the glass shower doors to our walk in shower taken down and I will replace them with a heavy duty shower curtain. Luckily we live in a one story home on a concrete slab and there are no steps that he will have to deal with. That's my story...and I am sticking to it..LOL I am sure it is similar to many others in this group. I don't like how I found all of you but I must say that I am glad you are right here at my keyboard and over the next few months I am sure I will have lots of questions. Thank you so much for being here even though it isn't in the best of circumstances of meeting people. Love to all of my new TM family..God bless all of you, Emily Meyers Columbus, New Jersey
Re: [TMIC] New to TM
MRIs of the thoracic spine were taken and then another one with contrast and it was in these MRIs where they could see abnormalities (lesions). He was then turned over to a team on neurologists and more tests (cat scans, blood tests, MRIs, and spinal taps) were taken. He was also tested for every known viral and/or immune disease known to mankind to include Lupus, Lyme, Herpes, HIV, Hepatitis, just to name a few. Me too, the tests seemed endless and were awful. The last thing they thought it might be was cytomegalovirus a 21 day test. I was so excited thinking it might be something that then they could fix it. But no, I was idiopathic my numbness began on 9/11/2005 just below my tail bone. I went to the chiro for 4 weeks who said if it progressed to constipation to see the doctor It did, i did and the doctor couldn't get me in for a MRI anytime soon. She said if i felt any further numbness to go to emergency. About a week later, in the city I was working in, Rochester, i woke with cartoon legs, drove myself to emergency spent a weekend in the hospital where they gave me pred. and thenoral... I walked in and walked out but six weeks after that on 11/14/05 at 3:04 am after going to the bathroom, I was suddenly unable to walk, fell on the floor, crawled to the phone (my bedroom was on the second floor of my house). wriggled in some pants, called the cat stitter so emergency wouldn't break down my door to get to me. I haven't walked again and was away from my home for over two years. It was deemed idiopathic each time. But now that i know a bit more I wish i had received the blood treatment some have received and wonder if the steroids helped or hurt-- setting me up for the recurrence that has left me paralyzed. Who knows? In the beginning the tests hurt more than the condition. I hope all resolves well for your husband. He can walk and move his legs which is a great sign! Akua --