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Old 01-23-2010, 09:34 PM   #1
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jodi n HB User
Question Terrified and feel all alone!!!!

Hello,
Thank goodness for this board, otherwise id be all alone.
I am very terrified that i might have the diagnosis we are all dreading. I am almost 2 months out of surgery for a discectomy, laminectomy on L4/5 in the back. Well.. i am still feeling nerve pain, and have since seen a psysiasist, and neurologist, the physiasist was concerned with clonus of the ankle, the neurologist was not, but was concerned with my reflexes. She calles them brisk, or jumpy, and ordered an mri of the brain. Last week i had a emg,ncv tast done, and the tech said everything looked good, however i still have to see the dr. I am on 300mg of neurontin 3xdaily, as well as muscle relaxers, yet as of thurs i started noticing twiching in my body EVERYWHERE! now this is where i become terrifies of als, unfortunately the pain in my back has created such anxiety and depression, all i can do is think of what this could be until i get the mri done, and get the results. I have a little 2 1/2 yr old at home who needs her mommy, and all i am right now is so depressed and scared, can anybody tell me if twiching is a sign of als? and would the emg/ncv detect it as well, what about the mri? I has a c/t scan done last year for something else, but it came back all clear, would that have showed as well?
Any any advice would help, i am terrified!!!!

Last edited by jodi n; 01-23-2010 at 09:35 PM.

 
Old 01-25-2010, 10:50 PM   #2
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serenitygirl HB User
Smile Re: Terrified and feel all alone!!!!

Quote:
Originally Posted by jodi n View Post
Hello,
Thank goodness for this board, otherwise id be all alone.
I am very terrified that i might have the diagnosis we are all dreading. I am almost 2 months out of surgery for a discectomy, laminectomy on L4/5 in the back. Well.. i am still feeling nerve pain, and have since seen a psysiasist, and neurologist, the physiasist was concerned with clonus of the ankle, the neurologist was not, but was concerned with my reflexes. She calles them brisk, or jumpy, and ordered an mri of the brain. Last week i had a emg,ncv tast done, and the tech said everything looked good, however i still have to see the dr. I am on 300mg of neurontin 3xdaily, as well as muscle relaxers, yet as of thurs i started noticing twiching in my body EVERYWHERE! now this is where i become terrifies of als, unfortunately the pain in my back has created such anxiety and depression, all i can do is think of what this could be until i get the mri done, and get the results. I have a little 2 1/2 yr old at home who needs her mommy, and all i am right now is so depressed and scared, can anybody tell me if twiching is a sign of als? and would the emg/ncv detect it as well, what about the mri? I has a c/t scan done last year for something else, but it came back all clear, would that have showed as well?
Any any advice would help, i am terrified!!!!
Hi Jodi;
I just came on this site by accident but was glad I did when I saw your terrified note posted here. I was glad to know that I am not alone with this. I have just been diagnosed a few weeks before xmas and have been told that the twitches is what made them finally get onto checking into als and sure enough that's what it was. Ask your surgeon to do ems testing, electrical impulse testing, that will tell pretty much for sure. My regular dr. said that als is the main disease that the twitching happens in. Good luck honey, but please know you are not alone. I leave for Vancouver for a second round of electrical testing, I jokingly call it my shock treatments, though I sure do know this is no joke. I have great support system, friends family, doctors and therapists who have all been in contact with me already. As has the ALS society which is just fabulous. Most of all keep the faith girl. Keep me posted. Gloria remember if God saw you to it He'll see you through it that is what I am living on, though it's very mind boggling and overwhelming some days. One day at a time and learn the serenity prayer.

 
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Old 05-01-2010, 09:03 AM   #3
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vogan HB User
Re: Terrified and feel all alone!!!!

all my family are with you in spirit,you are not alone,god bless
jim Lynch

 
Old 05-03-2010, 12:56 AM   #4
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serenitygirl HB User
Red face Re: Terrified and feel all alone!!!!

Jodi n
jodi girl, I can sure feel or rember feeling what you are at the moment. I'm no doctor of course but I had an mri, only showed that I had 3 bulging discs in my neck. The neurologist said to cancel the cat scan as it would show no stroke has occured. The neurologist did some feflex tests, then checked out my hands which were at that time twitching all over, like I had aliens in me. I had had these for awhile, since early fall at least. When my little finger on my right hand dropped and wouldn't listen to me I knew something was wrong. My dr. thought stroke, hence the ct scan order. I asked to go to a neurologist and thank Gosh he sent me. I also could notice that my right hand was flattening out below my little finger, like it had no meat substance left to it, between my thumb and forefinger were also getting flat and hollow looking is the only way i can discribe it. I had been telling Dr's for 7 years nearly about the major body muscle cramping I was having, feet upper legs, front and back, hands, arms, especially fingers (trigger fingers) to no avail. Quinine helped that somewhat but not totally and was getting worse and oh so painful. Anyhow the neurologist sent me to another neurologist for electro whatever testing and he confirmed that I had ALS. Sent me to Vancouver to the top Dr. there for a second opinion he said, but I wondered as I had to meet the whole ALS team the next day, later found out if you go to Vancouver there is little doubt that you have als. The first diagnosis was Dec. 9th, Merry Christmas Eh?? Not!! I am still in shock but getting on with getting my end of life stuff started and my home dunged out. mom says i won't get it done for 60 years!! Don't think I have that long. Just got a COPD diagnosis last April and now 2 weeks ago got a positive on Sjogren's sydrome. For those of you that don't know what that is, it is when your mouth drys out like the Sahara desert, cheeks stick to your teeth, tongue like shoe letter, not a drop of moisture in it, a horrible thing. It can affect your eyes and other places and eventually your lungs get it and something or other crystalizes and the end result is the same, your lungs fail. **Salogen, medication, works great, 4x a day. Mouth seems to dry out just like clock work, med time, so always have it on you. I am so grateful to be able to finally sleep now. I really wish you all the luck, great doctors, esp. family and neurologist, and that if you do have it you get as lucky as me to get a great ALS team to help you through this. I have the best, 2 actually and the best medical doctors ever. Take care, I'm sending my angels to help you out.
Gloria (serenitygirl)

 
Old 05-17-2010, 04:06 PM   #5
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Cassandra Jean HB User
Re: Terrified and feel all alone!!!!

This may sound wacky, but the question saved my life, so i am going to ask it of all of you- have you checked your house for toxic mold? Have you or do you live, work or (did you go to a school) with water leaks, musty odor, mold growth?
The second factor to look for is chemical exposure.
Third, do you have a red-headed relative or are you of Italian descent?

 
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