new to group

 

Several days ago, I discovered the TMIC by way of a link from the Massachusetts General Hospital page. What a relief to find a group that understands what this condition is all about. I have learned more in these few days than I have learned from either of the two neuros that have treated me for the last 2 years.

 

I was diagnosed with TM Oct, 1996, one week before 50th birthday. This is a disease I had never even heard of. It started with tingling and numbness in fingertips and abdomen, and spread to back, feet,and legs. The second morning in the hospital, I had excruciating pain from fingertips of one hand, up the arms, across the shoulders to the other hand. After that, I couldn't even pick up the pencil to order the day's meals. The weakness quickly spread to entire body below mid-chest.

 

MRI showed lesion at C5-6. CSF was normal. Evoked potentials visual abnormal but brain MRI normal. No visual problems. Came out of hospital on weak, shaky legs and didn't have enough strength in hands to wring out a sponge. At least I was walking. Couldn't stand to have feet resting on bed at night due to painful, sensitive soles and heels. Frequently couldn't tolerate cloth against skin on abdomen because of burning pain. Bowel function directly affected and required stimulants. Sexual function also affected. Knee joints were painful. It hurt to move much, and staying still resulted in extreme stiffness.

 

The neurologist assigned to me in the hospital said that it would be at least 2 years before I would return to anything approaching normal, if that was to occur at all. It appears that he was right on target. He told me that professional guesses are that this is a virally induced auto-immune problem. Hindsight reminded me of the unexplained feverish hot feeling I frequently felt in my face for hours and sometimes days at a time for more than a year before the attack, with no other symptoms of colds, flu, or infection. Fatigue was also a problem, but I was carrying many responsibilities at the time, so rationalization was easy. Once in awhile I also experienced a small (2"x3") area of surface numbness just below my right ribcage, nothing more than a curiosity at the time.

 

Now two years after onset, major loss of strength in limbs has disappeared. MRI no longer shows evidence of the lesion. Bodily functions returned to same state as before attack. Fatigue is an ongoing problem. Although those unpredictable bouts of totally debilitating fatigue occur less often, they make me totally worthless when they hit.

 

Ring finger, little finger, and part of palm on left hand extremely sensitive to touch. Still have numbness, pain, burning, and sensitivity in abdomen, back, both feet and right leg, but strength is good. These symptoms seem to act like a barometer of stress, especially the band of burning on the abdomen and back. They are not quite so bad when I am rested and not overburdened, but they flare up in a big way when stress mounts. I can't stand to have cloth touching those areas when that happens.

 

Dealing with the burning and skin sensitivity is a daily and hourly task. During that 1st week, while in the hospital, I was on prednisone IV. Oral prednisone, 80mg daily for months after, then replaced by Neurontin, increased gradually to 800mg 4 times (3200mg total) daily until I decided enough was enough. Muscle stiffness and spasms in left hand, feet and legs began to get worse while on Neurontin, and got better after I stopped. Amitryptilene caused immediate major roaring sound in ears only while talking or hearing sounds above a whisper. Zanaflex also taken for muscle stiffness, then stopped at my request. It seemed to help up to a point, but symptoms didn't increase after I stopped taking it. Increased Neurontin also lead to pronounced sexual dysfunction that gradually improved after withdrawal from the drug. (Johns Hopkins urologist was ready to prescribe Viagra.) At one time, I was on Tegretol---withdrew after seeing no benefit. I have been taking Amantadine to relieve fatigue. Attempts to withdraw from Amantadine seem to result in increased pain and sensitivity, although neurologist is somewhat surprised at this effect, since pain relief is not the intended effect. I prefer to live free of medication to the extent possible, but I'm willing to give recommended drugs a chance. If they don't appear to make enough difference to offset side-effects, I withdraw from them gradually to see if there is any adverse effect or lost ground.

 

My neurologist at Johns Hopkins Hospital is non-committal on chances for a recurrence. He says he will diagnose MS if there is another attack. Recovery to this point has been excruciatingly slow, but I am grateful for every bit of it.

 

The neurologists have stressed how very serious this condition is and they have always reminded me of how lucky I am to be walking and to have control of bodily functions. Not believing in luck, I am reminded that that the Bible, written long before I had this problem, reminds us that "everything works together for good for those that love God and are called according to His purpose", this condition included, if for no other purpose than to cause me to live every day with an attitude of gratitude for all the things that are right in my life. I can't say whether a positive attitude will promote improvement of this condition, but I can say that this illness is much easier to accept, knowing that the same Lord that cares for something as relatively insignificant as a sparrow has promised to give strength for every trial. I always remember the Apostle Paul who prayed three times to have the "thorn in his flesh" removed, to no avail, but was told that the strength of the Lord is made perfect in our weakness. I sure don't occupy a place of honor like Paul did, so I guess I can live with it if he did. His experiences are a constant source of encouragement for me. It keeps things in proper perspective. (Ever wonder what that "thorn" was? I think I know why we weren't told.) I'll never forget the many assurances I received from so many people that said they, and others at their various churches, were praying for me. Knowing that these people, many of whom don't know me very well, if at all, were taking time to care about my need is enough to build anybody's strength and confidence that your future is secure no matter where the path leads.

Living with TM is a daily challenge, but that's the only way to handle something like this. We can only try to make the most of the situation we are in as it comes to us minute-by-minute. Our future may be better or worse, but it stands an improved chance of being better if we can keep the concerns of all those tomorrows from stealing the only day we have possession of right now. We can get very depressed by thinking about how this condition affects us and those around us. We can also look in the other direction and feel very fortunate by taking stock of those blessings we still have. 

Excuse me for the length of this first submission to the TMIC. And thanks to all those who have taken time to share your experiences. Thanks especially to all those responsible for putting the TM Association together.

Don from Maryland