[TMIC] acceptance is tough
Thank You ALL! for the response to my first entry. Since reading about so many of you I now feel extremely lucky to be able to do the things I can at this moment. I am a stickler for details so I will try to start from the beginning as accurate as possible. I have been building a house in the mountains for a couple of years and been trying to do it mostly by myself. I was loading up on my trailer ( that I use to haul my tractor around with) a used washer and dryer in my, In laws driveway and noticed I had what I thought was a crick in my neck. I thought well no big deal it will go away in a few days. I proceeded up to the mountains to unload my new treasures and did so by myself just like always. The next day I noticed that I had a pain like a muscle spasm in the middle/right side of my back. I think the crick had magically disappeared. I remember thinking that was odd but now I have a spasm to contend with now ( cause when your doing construction you constantly have pains ). That night I woke up in the middle of the night with some of the most extreme pains in the upper middle of my back, like between my shoulder blades. The pain just kept building and building, so because of the awful discomfort I got up and started to walk and I would just collapse straight down like an accordion. The first time was so unreal to me I could not just get up and was like ( what the H ) . I started to claw and grab the bed and furniture any way I could to get myself up and then I would go to walk and down I would go again. By this time the pain,shock and disbelief, happening all at once was starting to make me cry. When I would get back in the bed my legs were just jerking uncontrollably with powerful jerks. I was in total confusion. My arms were going numb and I remember thinking (am I having a heart attack? Is this what it feels like when you're having a heart attack?). I tried many times to get up and walk that night cause of the unreal pain going on and sometimes I would be able to walk to the kitchen and other times I would just fold up and go straight down just like as if I had no legs at all but I would pull my self up again and again till I finally got on the computer and did a search about heart attack symptom's. With that search I felt like I had 7 out of 10 signs of having a heart attack and at that point was thinking, that is what was going on. ( I will continue later I must go for now ) **It's Tax Time! Get tips, forms, and advice on AOL Money Finance. (http://money.aol.com/tax?NCID=aolprf000301)
Re: [TMIC] soda
There is no things such as TM...that is crazy. You can have MS and have only spinal cord lesions, I have 3 areas in my spinal cord. No lesions on my brain. I have a form of MS called Devic. It effects the optic nerve and the spinal cord. Jenna - Original Message From: Butcher, Bernard G (NY80) [EMAIL PROTECTED] To: Jenna [EMAIL PROTECTED]; Lawrence King [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Wednesday, March 5, 2008 10:06:59 AM Subject: RE: [TMIC] soda Yes, they are very similar, my understanding is that one is spinal cord leasons the other (MS) is brain leasions. Some say there is no such thing as TM (?) BERNARD BUTCHER From: Jenna [mailto:[EMAIL PROTECTED] Sent: Wednesday, March 05, 2008 10:00 AM To: Butcher, Bernard G (NY80); Lawrence King; tmic-list@eskimo.com Subject: Re: [TMIC] soda Bernard, You can still have TM as part of MS. If that makes any since. I'm sorry you are having more problems. Take care Jenna - Original Message From: Butcher, Bernard G (NY80) [EMAIL PROTECTED] To: Jenna [EMAIL PROTECTED]; Lawrence King [EMAIL PROTECTED]; tmic-list@eskimo.com Sent: Wednesday, March 5, 2008 9:24:36 AM Subject: RE: [TMIC] soda Hi Jenna - I recently suffered an attack of optic neuritis. I think. In November I started seeing double if I look to my right - I got an MRI and now my neuro tells me I have MS, not TM. BERNARD BUTCHER From: Jenna [mailto:[EMAIL PROTECTED] Sent: Tuesday, March 04, 2008 7:41 PM To: Lawrence King; tmic-list@eskimo.com Subject: Re: [TMIC] soda Hi Mindy, I have also given up soda. I stopped diet soda back in 1999 when the second episode of optic neuritis happened, because the neuro. ophthalmologist told me that could of caused the optic neuritis. But 2 years ago, I just desided, no more soda. I sometimes still miss it and want it. But for me I can't just have a littleI want a lot. I recently also gave up wheat and that has helped with my pain, fatigue, and I seem to be sleeping better. Plus it is helping with the weight lose. Jenna - Original Message From: Lawrence King [EMAIL PROTECTED] To: tmic-list@eskimo.com Cc: Lawrence King [EMAIL PROTECTED] Sent: Tuesday, March 4, 2008 2:09:46 PM Subject: Re: [TMIC] Unidentified subject! for all Hi Steven, It's the one year anniversary of my TM attack and I was affected at C4-C5. I guess it would qualify as a semi acute attack as my symptoms developed slowly and I never lost mobility or even urinary/bowel control though it does take more effort these days, what I did develop was neuropathic pain from the chest down: feels like I'm being electrocuted 24/7. My pain has never improved and is not likely to and my balance is poor. To avoid burning sensation I have given up all soda and limit juice to a small cup a day. I find I can handle coffee if I drink a lot of water. I also take vitamin C at night to acidify the urine and reduce my chances of developing an infection. Hope this helps.. Mindy the Artist On Mar 2, 2008, at 9:31 PM, Larry Throne wrote: Welcome to the family Steven! You'll find a lot of love and understanding here. Where are you from? Maryland? From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: Mon, 3 Mar 2008 00:06:18 + Subject: [TMIC] Unidentified subject! My name is Steven Jabs I am 34 years old. I have TM since 2003 I was affected from the chest down and lost my breathing. I was treated at John Hopkins by Dr. Kerr. I currently walk with a cane. I have bladder problems and allot of burning. I would like to talk to people who also have TM.[EMAIL PROTECTED] Mindy King www.chairweaver.com (740) 662-2001 Never miss a thing. Make Yahoo your homepage. Never miss a thing. Make Yahoo your homepage. Never miss a thing. Make Yahoo your home page. http://www.yahoo.com/r/hs
[TMIC] TM-wheat
I just wanted to add something more to what I wrote before. A friend of mine on the list asked a question about why not eating wheat helped me? And I realized I didn't say that in the e-mail. So the reason I went off wheat is because I am allergic to it. The Dr. told me 3 or more years ago to stop eating it, or to eat very little. I was also told by the lady that does my facials, when I can afford them, that the breakouts I was having around my chin and jaw was a wheat allergy. But I didn't listen. So finally when I had been told about 10 times I listened and did it. Since I am allergic to is it causes inflammation in my body. With the inflammation gone, the pain it gone. I hope this clears up what I was talking about. Jenna Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping
Re: [TMIC] soda
*Bernie,* *Has your neuro suggested having the NMO IgG test to rule out Devic's? Although TM can be a part of MS, that is not the norm. Their cord lesions are usually small, and not transverse, causing minimal difficulties. In Devic's, lesions are very long, often transverse, and often become necrotic causing permanent damage. Just a thought. I'd rather err on the side of caution. * ** *Grace*
Re: [TMIC] Unidentified subject!
Steve This is great news that gives us all reason to celebrate. Thanks for sharing it with us. Patti - Michigan [EMAIL PROTECTED] wrote: I found out good news today. I had heart problems due to a form of vasculitis on top of the TM. Had an echo done on my heart today. Doctor said my heart is back to normal and he is going to ween me off the heart meds. One thing down now for the next. Everyone out there hey, We have to be positive about things it pays off in the long run!! Hope everyone is having a good week Steve Jabs from Pa
Re: [TMIC] soda
This is amazing. I too have almost given up soda. I water mine down - 2/3rds water and crushed ice to 1/3 soda - once a day. It's a treat I look forward to, but maybe I should give it up completely. I've lowered my flour consumption and have lost 12 pounds since Christmas. Yeah! Patti - Michigan Jenna [EMAIL PROTECTED] wrote: Hi Mindy, I have also given up soda. I stopped diet soda back in 1999 when the second episode of optic neuritis happened, because the neuro. ophthalmologist told me that could of caused the optic neuritis. But 2 years ago, I just desided, no more soda. I sometimes still miss it and want it. But for me I can't just have a littleI want a lot. I recently also gave up wheat and that has helped with my pain, fatigue, and I seem to be sleeping better. Plus it is helping with the weight lose. Jenna - Original Message From: Lawrence King [EMAIL PROTECTED] To: tmic-list@eskimo.com Cc: Lawrence King [EMAIL PROTECTED] Sent: Tuesday, March 4, 2008 2:09:46 PM Subject: Re: [TMIC] Unidentified subject! for all Hi Steven, It's the one year anniversary of my TM attack and I was affected at C4-C5. I guess it would qualify as a semi acute attack as my symptoms developed slowly and I never lost mobility or even urinary/bowel control though it does take more effort these days, what I did develop was neuropathic pain from the chest down: feels like I'm being electrocuted 24/7. My pain has never improved and is not likely to and my balance is poor. To avoid burning sensation I have given up all soda and limit juice to a small cup a day. I find I can handle coffee if I drink a lot of water. I also take vitamin C at night to acidify the urine and reduce my chances of developing an infection. Hope this helps.. Mindy the Artist On Mar 2, 2008, at 9:31 PM, Larry Throne wrote: Welcome to the family Steven! You'll find a lot of love and understanding here. Where are you from? Maryland? From: [EMAIL PROTECTED] To: tmic-list@eskimo.com Date: Mon, 3 Mar 2008 00:06:18 + Subject: [TMIC] Unidentified subject! My name is Steven Jabs I am 34 years old. I have TM since 2003 I was affected from the chest down and lost my breathing. I was treated at John Hopkins by Dr. Kerr. I currently walk with a cane. I have bladder problems and allot of burning. I would like to talk to people who also have TM.[EMAIL PROTECTED] Mindy King www.chairweaver.com (740) 662-2001 Looking for last minute shopping deals? Find them fast with Yahoo! Search. http://tools.search.yahoo.com/newsearch/category.php?category=shopping
[TMIC] JUDE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I CALLED JUDE THIS MORNING AND THEY WHERE THERE TO TAKE HER TO THE HOSPITAL SHE HAS NOT FELT WELL THE LAST FEW DAYS. I HOPE THIS TIME THEY HAVE EVERYTHING IN ORDER SO SHE CAN GET TREATMENT, I WILL CALL HER LATER AND PRAY SHE WAS TREATED .I AM GIVING HER TIME TO REST AND HOPE SHE GIVES ME GOOD NEWS, GOD BLESS JUDE AND OUR TM FAMILY TIAD PAM **It's Tax Time! Get tips, forms, and advice on AOL Money Finance. (http://money.aol.com/tax?NCID=aolprf000301)
Re: [TMIC] continue acceptance is tough
Galyon - I understand the frustration. I've been through this too. People look at you and just expect you to just - stop doing something - as if it is a behavioral issue. You should try to be a teacher and have rediculous county officials (most are not that intelligent or have a strong educational background - you should see what types of degrees many of them have - P.E. and health ect) chalk you up as defiant or violate rules and proceedures and conduct codes because you pee too much at the wrong - unscheduled times - that you walk with a limp or you don't jump up and run to the door when the bell rings because you CAN'T and then they document you as insubordinate. I understand what you mean when someone invites you to church and you sit in the back because you know that you'll have to go to the bathroom 5 times during service - and when you legs twitches people stare at you for inturpting their little spiritual moments. Trust me - it gets frustrating. I hate, after all that, to go to a doctor because you are in pain - and they say 'well, that's just part of the problem or you spine MRI shows normal range readings - except for a few minor signals in your spinal nerves ect. Well those minor readings hurt like hell, keep you up at night, make you drive to work scary, and never let you rest for a few moments. Always feel free to share your feelings. It helps get stuff out but it also helps others as well. [EMAIL PROTECTED] wrote: Now I have always been the type person that won't go to the doctor when I should and still had the same attitude even at this time, cause the pain would change from un bearable to just as soon as the pain would start to let up, I would think alright, I'm gonna be ok. Finally my wife convinced me to go to the mountain hospital to let them look at me own our way back home. If any of you have ever been to a small town hospital you can imagine how different the experience can be. The doctor had them to do a cat scan on me and she thought I was in pain from my spinal stenosis that she diagnosed me with. Of course now I'm riding back home with my leg jumping around and would not stop moving and my wife was thinking can't you stop that? I said no my legs are jumping all on their own. After 1 hour 45 min. we arrived at our main home (where all the flat landers live). That night I was hit again with the same symptoms as before. And went to a more modern day hospital. I had to use a wheelchair and was in tears from the pain. Now with more doctors looking at me they decided to take me to have an MRI cause at this point they thought I had something wrong with my spine and was gonna need immediate surgery for what ever they find. I was put on IV steroids and glad of it and of course pain meds to try and calm me down. Then the doctors came in and said, ( will continue later) - It's Tax Time! Get tips, forms and advice on AOL Money Finance. - Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.
