Oh, I don't mind talking about it at all. I was 58 when it hit me May, 2005 and I went from a very busy RN, driving back and forth every day 40 miles each way plus working hard at home on the weekends since we have such a big lawn and I love mowing (about 4 hrs) plus almost 8 1/2 acres. The day began just like any other day when I wasn't working with me being outside, weed whacking, digging, and mowing on our riding mower and I noticed the tingling in my left leg and a bit in the right. And like most of us, didn't think much of it. By that evening, my back was a little achy but just thought it was because of all of the work. Upon waking the symptoms were still there and when I sat on the pottie, I could only urinate a tiny bit and then the excruciating pain in the right groin area hit and just took my breath away. I was really feeling weird and not walking really steady so I went in and told Jack that I wasn't doing too well, that he should probably call 911 and that I was going to try to go to the bathroom again. I sat down on the toilet and couldn't but when I tried to stand, I couldn't do that either. I called to Jack and he had to literally drag my into the bedroom and lay me on the bed. The Sheriff got there before the ambulance and finally off I went to our local ER. There was a doctor there who was only filling in and he just poo-poo'd the whole thing thinking I had pinched a nerve. No one seemed to think it was a big deal at all even though my left leg was totally paralyzed and the right one almost was . The pain was horrible and after a couple hours he decided to take an xray. nothing. He still didn't think much of it and just left me laying. Finally he decided to send me to Walla Walla (where I worked and where they have two larger hospitals) for an MRI. By then I was gasping from the pain and by noon I was totally paralyzed from the waist down. Jack asked them to admit me to the ER there and they refused saying the doctor in Dayton would not release me'. So off we went in the ambulance to the other hospital where the clinic I worked for was affiliated. They would not let me into the ER saying the same thing, the Dayton doctor would "not release me". They made me stay outside the ER door for 45 minutes (this is true!!). My family and the ambulance driver were in and out trying to get someone to help and let me in and all of this time the ambulance nurse and I were inside the ambulance. She was trying to call the doctor on call (she happened to be his regular nurse) and couldn't reach him! I was in agonizing pain and 'no, they couldn't help me with the pain, either'. My family tried everything and finally they let me in and gave me morphine for the pain. The on call doc never did show until mid afternoon and my daughter even had to ask them to cath me. The on call doctor said he couldn't get me into the ICU in that hosp. because they were 'full' and so was the other hospital and the neurologist 50 miles away wouldn't 'touch me with a ten foot pole' so Jack said, "Well, let's get her to Seattle, right now!" So, they finally called for the med flight, bundled me up and off to the airport we went and by then I was paralyzed from the chest down so it was moving up!
When we finally got to Seattle, Harborview, the neurologists were waiting at the ER door for me and the first thing they asked was if I had a Living Will and would I like to see a minister or priest. Off I went and immediately put on a very high dose of steroids which probably saved my life. I was there for a week and had every lab and test you can imagine, spinal tap, brain wave scans, more MRI's, etc. The MRI's done in Walla Walla were not any good but the first one they took in Harborview, they found the damaged part of the spinal cord. The neuro was so good and honest. He said he just didn't know what it was but could see the damage to my spinal cord at the T4 level..why, he didn't know so they were going to give me the diagnosis of TM and he had to look it up to even understand it. It was a couple days before I could wiggle my left toe which was exciting. My right leg was still immovable but hypersensitive to touch and temperature Bowels and bladder were not working on their own. I had to have my stomach pumped because I began vomiting and couldn't stop so they put a GI tube in. After a week, they felt I could be sent on to Rehab so they set up an ambulance who as it turned out, got lost on the way and took me all of the way to Spokane which is way north of where I should have gone and they didn t know how to find their way to Richland, which was where I was to go for the Rehab. They said they had no phones and no radio to contact anyone. No air conditioner in the 90+ temperature, either. Luckily, I had my cell phone and called my husband who walked them through the entire trip. Oh, my.... Two weeks of pure old sweat in rehab and went home using the wheelchair and transfer board, full time cathing and rehab in Walla Walla, twice a week. Thank God, my friend took me the 40 miles each way. Lots of miles between then and now. I can walk but I look like a drunk and am too stubborn to use a walker and rarely use a cane unless I have to. Jack took an early retirement to take care of me so whenever we go, I am usually holding his hand. Life has been so good to me. I continue doing PT at home by using the treadmill and hanging on like heck but the best thing I ve done for myself is to get a program set up doing water therapy in the hot tub. I still have no real feeling from the chest down (where the infamous band' still is) except mostly pain which is usually bearable taking Lyrica and Ultracet and occa. Ibuprofen. Sometimes that isn't enough, especially with the weather changes. You talk about 'talking'!!!!! I think I hit the record, guys!!! Sorry! That is why I haven't written anything because I knew it would take awhile! Please forgive me, all....hugs, Jeanne in Dayton, WA -------Original Message------- From: Janice Date: 3/24/2009 9:40:50 PM To: jrushton Subject: Re: [TMIC] Water Temp & Pin & Needle Pain Jeanne, you said you walk - do you use a cane or walker or are you independent? How long have you had TM? How old are you? Hope you don't mind, not trying to be nosy, just curious about my new friends. I am just realizing that our group has people totally from the West coast to the East coast. Pretty neat! ttyl (talk to you later) ----- Original Message ----- From: jrushton To: Janice Sent: Tuesday, March 24, 2009 9:49 AM Subject: Re: [TMIC] Water Temp & Pin & Needle Pain Of course you can, Janice. Mine is [email protected]. You are welcome as sunshine to have it!! Also, I wanted to tell you that my family is from Licking, MO and we go back generations there in that little town. Jeanne in Dayton, WA -------Original Message------- From: Janice Date: 3/23/2009 11:15:31 PM To: jrushton Subject: Re: [TMIC] Water Temp & Pin & Needle Pain Hi, this is Janice. I am trying to gather some info on those TM'ers that email. Can I have your email address? Also, would you give me a hstory of your TM? I have received histories from several of the TM'ers after I sent mine on email. I just like a background of someone I am emailing too. They have all given me their ages and where they are from. Thanks, Jance ----- Original Message ----- From: jrushton To: [email protected] ; tmic Sent: Sunday, March 22, 2009 1:36 PM Subject: Re: [TMIC] Water Temp & Pin & Needle Pain Hi, everyone! I've been reading all of the notes on body temps and could not agree more that since the onset of TM, we no longer have a normal thermostat'! We do have to be careful with our circulation and neuropathy so it is so important to watch our limbs (as you learned from my last mishap!) not only for hot and cold water but injuries. Since day one, I have hypersensitivity on my right side and no sensation on the left even tho it is by far the strongest. They both feel very heavy and both have constant excruciating pain so Lyrica and Ultracet do help take the edge off. The temperature outside has really played havoc with the pain. The cold and rain really increases the pain and I have added prescription Ibuprofen. It's tough but we just have to take care of it as it occurs. I feel blessed that I can walk and am alive. What more can I ask than that after what I had when it first happened?? Jeanne -------Original Message------- From: Todd Tarno Date: 3/22/2009 12:13:18 PM To: Janice Cc: TMIC Subject: Re: [TMIC] Water Temp & Pin & Needle Pain Hi Janice, Water temperature are very hard to tell all the time. I always but my shower at it's hottest to warm up my shower chair, then lower the temp with my hands telling me the temperature of the water. I'm able to run very warm water over both legs when they are cold. But please be very careful. Pin & Needles Pain are full time too. They can start out really bad in the beginning, then get better, and as you get NEW feeling, they can get worst again. You could ask your doctor to up & lower the dosage of your Pain Meds Neurontine/Lyrica. I'm on 300 mg Lyrica a day. Hope this helps, Todd in Corpus Christi, TX TM since April 1, 2002 @ T-4 to T-8 --- On Sat, 3/21/09, Janice <[email protected]> wrote: From: Janice <[email protected]> Subject: [TMIC] To: "transverse myelitis" <[email protected]> Date: Saturday, March 21, 2009, 4:15 PM This is Janice - yet again with another question. It has been 2 years since the onset of TM. From the top of my ribs to my toes I can not tell water temperature on my skin. I have to be very careful with taking my showers. Do any of you have that? I am wondering if it is something that will eventually go away or if it is something I will live with. Also, one improvement I have just noticed lately is the constant "buzzing" that I had in my legs as soon as feeling started coming back. Did you all have that and have any of you also lost it? Thanks again, Janice
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