Hi Regina and Welcome. I'm so glad you decided to share your story with us. As Barbara said TM is scary and it is great that you are now a vital part of a very supportive network here. If one of us doesn't have an answer, usually someone else will.
Interestingly enough, I also have Sjogrens and was diagnosed in 1988. I can't believe how many people are being diagnosed with Sjogrens - when I was diagnosed so many years ago, it was just like when I was told I had TM - never heard of it. Well, we are all very special - not many of us have heard of most of these diseases. Are you now on an immunosuppressant? Like Imuran (azathioprine). I have been on it for almost 5 yrs now as my doctors are trying to keep any inflammation down to a dull roar so that it does not go for my spine again. I can appreciate your position of being home alone. I am home alone most of the time. And I have been taking a lot tumbles lately. Never know when I'm going to, which is scary. I fell in my backyard last week on my back and head and laid there for 10 minutes before I could get the strength to roll over, get to my knees and eventually get up. That was scary. I can usually just roll over and get up. Not that time. Please keep posting so that we know how you are doing - or just pop in to say Hi. Linda ----- Original Message ----- From: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> To: [EMAIL PROTECTED]<mailto:[EMAIL PROTECTED]> ; [email protected]<mailto:[email protected]> Sent: Saturday, February 03, 2007 3:23 PM Subject: Re: [TMIC] Regina's introduction Welcome, Regina. No need to apologize at all. TM is scary business. Stress seems to be a big factor in leading up to TM. Whether it actually causes it or sets the body up to be more susceptible, I don't know. Most of us can't point to a specific cause of our TM. Do you have any kind of support system -- kids living near or neighbors? I'm concerned about you living by yourself if you have a bad fall. Would a walker be of more help than a cane? As we so often say, we're glad you found us but sorry you had to get TM. :) Barbara H. http://barbarah.wordpress.com/<http://barbarah.wordpress.com/> In a message dated 2/2/2007 1:39:59 PM Eastern Standard Time, [EMAIL PROTECTED] writes: My turn to check in with the TM family. I keep procrastinating to introduce myself because it's so hard to put so much in a capsule. Anyway, here goes: I was diagnosed with Sjogrens in the late 80's, joined a group in Los Angeles where I lived to learn and share with others about this autoimmune disorder. Dry eyes and some fatigue was all I complained about. Others had complications, like lupus. I didn't. Had to see a rhumatologist on a regular basis to monitor the Sjogren. No big deal. I retired in 2000 and moved to the Bay Area to be closer to my son and daughter. Bought a town house, lived close to San Francisco, a fun social life, arranging big dinner parties, theater, travel, more time to spend with my children (grown), in short, looking forward to a fun retirement. Life was good. I took a fun part time job in S.F., also volunteered in a beautiful hospital boutique, loved working there. BUT three years ago things happened (personal problems) that put me under tremendous stress, painful sciatica followed, had to sell my house, wore myself out worrying, packing and storing everything, etc., etc..... I woke up one morning thinking my left leg was asleep. It stayed that way. I went on line and diagnosed the feeling as peripheral neuropathy. Saw a neuro who agreed and put me on neurontin, scheduled an MRI and suggested physical therapy. It didn't help much, felt progressively weaker and more unstable plus a strange feeling I could never describe, a sort of dizziness without things going round and round. When I told the rhumatologist that I didn't think I felt my bowel movements like I used to, she freeked. Told me this was serious, that I could be paralized (I thought she was joking), gave me a prescription and a doctor's name, I was to see him right away, and also the neuro. I wasn't even worried, looked at the prescription: Transverse Myelitis it said, and cytoxin. I was totally unprepared, didn't even understand that I was going in for chemo therapy. And I was on 80mg of Predinisone for the sciatica. I feel so lucky that she knew at once that it was TM. And so, spinal cord inflammation was checked, but the lesion remains with all the complications you are all so familiar with. I could walk, but eventually had to use a cane. I kind of managed, still worked at the hospital, still cooked a little and did my own housework until I fell on my back twice within the last 2 months. Didn't break anything but each time I fell, I could tell that something was very wrong. My legs felt weaker and less stable. I am now scared to walk through the apartment without holding on to the wall of the walker. Just making the bed or washing dishes is an ordeal. I can hardly get into the tub sitting on a chair to bathe. My left leg is throbbing so much I worry that I'll stop feeling it altogether. When I went to check my mail yesterday with the cane, just two steps and about 6 yards from my front door, I didn't think I'd be able to get back in without falling. I was alone and terrified. I made it somehow. It's progressive as opposed to what I read from some of you, like being practically paralized overnight. The neuro can't do much for me. She asked me last year if I wanted to get IVIG treatments but wasn't optimistic about the result. That was last year. The treatment didn't do anything for me. Nothing seems to help. What caused it? I had a younger cousin who died of MS. Is TM hereditary? I had breast implants at the age of 40 that were removed without leakage when I moved to S.F. Was that it? I had flu shots in L.A. when the company I worked for offered them and more in the hospital where I volunteer. Was that it? The "ablation" I had in July that landed me in ICU for 5 days because the surgeon broke a vessel accidentally, did that made my TM worse? Who knows..... I keep rationalizing: Reading your histories with complications so much worse than mine, fills me with shame. How can I complain. I can handle the pain, it isn't as horrible as the pain some of you describe. TM struck me late in life compared to most of you. I'm a widow, my children are grownup. I'm only responsible to myself as opposed to some of you having to raise little kids. And TM does strike little kids. How awful! I am ashamed to complain. Please forgive me. I look forward to reading all your emails. Regina
