Status
Not open for further replies.

worried

New member
Joined
Mar 7, 2006
Messages
7
I have made a few posts here and there and have spoke with a few of you, but now I need to please get all this off my chest because I can't sleep and it's eating me up inside. I apologize for the long post, but I want to give you some history.

It is coming up 3 years ago that I lost my mom to cancer. We were very close and my sister and I cared for her until the very end when I brought her home to die at my house.

Two years later I begin worrying excessively about my health. I worried about breast cancer for a while. Then back in Nov. of last year I woke up one morning with the worst headache of my life. My in-laws took the kids to school and me to the ER. Once there they did a CT scan - normal. To be sure I didn't have a brain bleed they would need to do a lumbar puncture. Something in me just did not want that thing. The doctor came in to do it and I didn' t feel confident in him (even the nurse was questioning him). He stabbed me three times and had much difficulty and contaminated one sample with blood. The test came back with protein and RBCs. They started treating me with Cipro antibiotics in case it was meningitis. A few days later I was sent home and had a horrible headache for many weeks. Around the same time I started having all-over body twitches.

My Doctor sent me to a neurologist for the headache. When I went for my follow-up appointment last March, I mentioned the twitching. He asked if it was localized and I said it was all over. He told me they were benign fasciculations.

The summer went pretty good, but still twitching all over. I did some research and found ALS. This scared me, but at least all I had was the twitching. Over the summer my wrists became more and more sore when I would bear weight on them, like to do a push-up or get out of bed. My right hand often felt stiff and just very slightly more "clumsy' in my pinky finger and the one next (for all I knew, maybe it was always that way - but I'm right handed). Finally I went to the Dr. She did x-rays and blood tests. When they came back normal she sent me to a physiotherapist.

The PT did a very thorough exam and pointed out that I have thenar atrophy likely from a nerve compression. He said my back is very stiff, especially on the right side so he is working to loosen it up. Because of my "research" on ALS, I nearly fainted when I heard the word "atrophy"! Fasciculations now atrophy?!?

Back to my Dr. I went. She said that I am likely over reacting and that she doesn't see anything to suggest ALS - I have no objective weakness and a super grip strength. All she sees is minor atrophy that was explained by the PT. To put my mind at ease, she is sending me back to the neurologist (appointment in January!).

The next week was a blurr and I had one panic attack after another. I keep checking my hands and feet and grip strength 100's of times a day looking for more atrophy, some kind of change. My whole body feels weak and my legs feel like jello and all of a sudden my exercise tolerance seems to have decreased, although I am still very strong at the gym. On and off, my feet hurt very badly and I have a constant burning sensation in my back and shoulders. Today I almost had a heart attack when I saw some very minor twitching-like movement in the atrophied area of my hand after I exercised it. I think I am going crazy!

I live in Guelph, On and want to be referred to the Londaon ALS clinic lead by Michael Strong - but my Dr. is sending me to my local neuro first. I have briefly corresponded with Michael Strong via email and he seems very nice - I'd just like to go to him right now!

Well, here it is Christmas time and I'm worried sick - not eating or sleeping well (lost 10 lbs so far). I won't see the neuro until some time in the new year and I feel like I am in hell just waiting and praying. I want to know for sure...but then again I don't. I am so torn up inside and doing my best to maintain a positive attitude and make this a good Christmas for my kids - I'm so worried for them. Sometimes I try to ignore it, but it won't go away.

There are several people around me who think my anxiety has made these "symptoms" worse and I can even believe that to an extent myself. They all treat me very well, but given my anxious history, I don't think any of them believes this could be ALS. I just pray that this will turn out to be something that I am making a big deal over. I am only 40 and I have two kids: 4 and 7. I want to see them grow up. I have dreams that they need to be picked up from school and I can't move. This fear is paralysing. I don't know if I can face going through this in front of them.

Thanks for letting me vent.

Nicole.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Nicole. We've talked before about "worst case" scenarios. Like what if they do all the tests and you put in your necessary waiting time to see if the symptoms progress and it turns out that all of this is driven by anxiety...how will you handle anxiety that causes this kind of trauma in your life?

Or what if time and tests prove your worst fears - ALS? How will you handle knowing that your time with your family is limited? I remember when we decided that, at the end of the day, none of us, ALS or not, are guaranteed a long life.

I think it is time to re-direct your thinking. You lost someone very important to you but your children have you right now. Go have some fun with them! Love, Cindy
 

Slipper

New member
Joined
Dec 14, 2006
Messages
2
Reason
CALS
Country
US
State
Louisiana
City
Ethel
Nicole, I would hope that I can help you have a Merry Christmas, Happy New Year, Peace, a good night's sleep. Your long list of symptoms sounds exactly like the onset of mine eleven years ago. From time to time I worry that I may have ALS, but so far I am not showing signs of progression or disability. Eleven Years. Hearing that alone should give you comfort. For me it is my left side that feels differently from the right. Sometimes I feel cut in half. I have the same burning feelings, all over twitches, pain and soreness in my wrists, pain in my heels, cramps...or I should say I USED to have all of those. About six months after the onset of the twitches and cramps, the strange sensations, etc., I looked at my hands and I had a tremor. Then cogwheeling set in, which is a strange ratcheting movement in my limbs. All of the tests were normal, three neurologists later, I was sent to a psychiatrist. His diagnosis was a "conversion disorder". I may be a hair crazy, but not about what was happening to my body. My friends were all ready to storm the doorways of the physicians who blamed it on depression, psychological problems, my "imagination", etc.
One day I learned how to use a computer and I went online, typed the words "Benign Essential Tremor" and began a journey that gave me answers as well as suggestions for remedies.
Is there something wrong with me? Yes. It's been called "Dystonia" for eleven years. That's sort of a catch all in itself, but giving it a name helps physicians understand the drug therapies in place.
Now let me offer a down side, a "disclaimer" of sort. Last week my sister was diagnosed with PBP, a form of ALS. That sent me reeling with fear for myself, thinking maybe my diagnosis all those years ago was incorrect. But her illness did not present itself the same as mine. She has slurred speech, major swallowing problems, no pain or twitches.

So let's get back to you. You definitely have something wrong with you. Twitchings aren't normal. The pain is not normal. That's enough to give you a panic attack. And panic attacks are dreadful enough, huh?!
Is there a physician who is willing to listen and work with you on some basic prescription drug "trials"? Two weeks before Christmas the year I found my list of symptoms online, I asked my physician to give me Tranxene, in the valium family, to help me with the stress of the holidays. I was really wanting to try the drug because it was on the list of drugs used to alleviate tremors and twitchings. Overnight my twitching stopped and my tremor calmed. I took a minimal dose three times a day back then. When that worked I went back to my physician and matter of factly presented info on the strange sensations that people with dystonia experience. He agreed it was matching up. He spoke with his colleagues, presented my long list of symptoms and they agreed it was worth exploring.
We had two ways to go with the next drug to try. There was a good chance my basal ganglia was producing either too much AcetylCholine or not enough dopamine. The reason we deduced that was because those chemicals work together to produce correct muscle tone. When something is twitching, twisting, cramping, etc., that falls into the muscle tone category. That brings you to dopamine/acetycholine imbalances. We tried dopamine and that increased the pain in my wrists and cramping. We tried an anticholinergic, Cogentin, in minimal doses twice a day. Anticholinergics block the overproduction of acetycholine. That relieved the stiffness and cramping overnight. I felt as if I had been freed. Furthermore I no longer had to fear the unknown. I even met others with the same diagnosis and realize I had been greatly spared.

About three years ago I went to a neurologist because I was experiencing cramping in my neck, throat spasms, stiffness. He ran all the tests again and found nothing. So we stuck with the same catch-all diagnosis of dystonia. He prescribed Baclofen, again in minimal doses, twice a day. That relieved all but the pulling in my neck. We doubled the Baclofen and alleviated that right away. Now do not let this scare you. Those drugs are also used to treat symptoms of ALS. They are also used in a long list of illnesses, either together or separately. So it is better if you understand that lest you become more afraid.

This past year I decided to lose some weight and get healthier. I'm 50, so I began slow, went to Aqual Fitness classes, a very low-impact cardio and flexibility program. This helped work out so many kinks and aches that I cut my baclofen in half. From there I took the spinner classes, a very grueling cardio bike class. I was a mad dog. I cut the tranxene in half after a couple of weeks. There is a lot to be said about trying to get healthy.

Nicole, I bet you don't have ALS. But I can tell you that life is short enough and you do not need to spend one more day being afraid. The human body is very complicated. The chemical reactions that take place in our nerves are complicated, confusing, a miracle actually. There is some reason why your muscles twitch and all the other symptoms on your list. That does not mean it is a terminal illness or even a disabling illness. Yes, it's a major inconvenience having those things occur in your days. They are a constant reminder that something is wrong and that no one can explain it to you.
Think of it this way...you and I have shared a fairly close set of symptoms so far, and I've added to my list along the way. It's frustrating, the "not knowing", but the fear can paralyze you more than any illness. I understand how that feels. I have about a two-inch thick journal of 18 months of trying to find out what was happening to me. Day after day, no answers, no end to it. Arm yourself with knowledge and at least one good physician who will look past your current fear and agree that something physical is taking place. Go door to door if you have to, but do not let them dismiss you. Be determined that over the next 12 months you are going to be in charge of your health, your drug therapies and your sense of peace with it. This physician may not be a neurologist - mine is an internal medicine physician.

There is one thing I can toss in, perhaps to add a bit of humor to it...if you are crying while you are talking to your physician, and if the physician then tells you that you seem depressed - - well look at it from their perspective, but just that once. Otherwise, stand your ground, even if you do it tearfully.

Please stop being afraid. It's a terrible feeling. Maybe get a puppy for yourself; mine is 11 years old. I just love him so much. When people hug you, soak it up, draw from the friendships and good will of others. Don't be too hard on your body with exercise that makes things worse for now. I think you have a good shot at getting well, getting past the unknown and on your way to controlling the strange changes that have taken place in your body.

Merry Christmas, happy holidays and I wish you a much better new year.
Slipper
 

janf

Distinguished member
Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
City
tifton
To Worried

GREAT JOB SLIPPER YOU KNOW HOW TO GET IT SAID . WORRIED SOAK IT IN. SLIPPER IS RIGHT LIVE TODAY FOR TODAY DON'T, DON'T LET ANYONE PASS YOU OVER. I DO HAVE OR LET ME SAY BEEN DIAG. WITH ALS 4X NOW I GO TO ALS CLINIC THEY ARE PROS BELIEVE ME ATLANTA GEORGIA THEY SAY SOME ALS SPEC. CAN TELL YOU PRETTY QUICK WHETHER YOU HAVE IT OR NOT. I WAS GOING IN CIRCLES FOR MOS. UNTIL I WENT TO THEM. THEY TREAT YOU WITH UTIMATE RESPECT. THEY NEVER TREAT YOU LIKE YOUR CRAZY. UNLESS YOU ARE! HA!HA! KIDDING. I WORKED IN MED. FIELD I KNOW HOW TO TREAT PTS. BUT, BELIEVE ME SOME DRS, NURSES DON'T CARE BEEN THERE DON'T WANT TO GO THERE EVER AGAIN THOUGHT I WAS CRAZY. WAS JABBED IN MY BACK JUST LIKE YOU ALMOST PASSED OUT DR. GOT MAD CAUSE I COULDN'T STAND THE PAIN. WORRIED, FIRST OF ALL PRAY! WE'LL PRAY. ASK FOR P E A C E.. THATS WHAT I DID IT WORKED I NOW DEAL WITH THIS DISEASE WITH A PEACE,WHICH, PASSES ALL UNDERSTANDING . I HAVE MUCH TO LIVE FOR (SEE PROFILE). DON'T LET THIS THING STEAL YOUR JOY REMEMBER FEAR IS NOT FROM GOD.. BLESS YOU! FEEL FREE TO SEND P-MESSAGE ANYTIME OK JAN FRANKS TIFTON GA. U.S. [email protected] LOWER CASE OF COURSE
 
Status
Not open for further replies.
Top