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Postby dont on May 7th, 2004, 10:04 am

Hello. I am new. I started having panic attacks and twitching in January. I am finally started to accept the doc's advice but it has bee very tough and very very very hard. I am still twitching. I had a brain MRI and a C-spine MRI and gallons of blood drawn however the neuro will not do an EMG. He said he can spot ALS the second someone walks in and that it is one of the easiest things for them to diagnose on exam. I have read Arron's sticky about it and do feel better. I do twitch all over but want to know if it's normal to tremble as well. I have thought about Parkinson's too. I also have dull aches in my legs and feet and toes and sometimes my forearms. Is this normal. Do have sensory sensations like burning and stinging and pins and needles. I also often times feel like someone is inside me thumping me like slapping my brain around. Anyone experience this? My thumbs twitch but they also tremble sometimes and my toes twitch and move too. The neuro said I have one of the strongest strength's in all limbs that he has ever witnessed in a femal patient and he said he does not do unecessary tests. I am not perfectly symetrical but my husband said that is normal. I had perceived weakness in my right leg and arm but the leg has pretty much completely gotten better and the arm perceived weakness still comes and goes. Neuro said strength is excellent and weakness is from fatique from panicking for so long and worrying. I was wiped out for a while. I tried three different anti depressants and they all made me feel like I was on speed so I'm not sure if I will try anymore. I am on Xanax but starting to slowly reduce it. I go from one minute to convinicing myself I am fine and then the next thinking it's some undetected neuro illness. I have been twitching for 4 months now and the perceived weakness is gone. The neuro said I would have obvious signs of ALS by the time I showed up in his office due to the twitching and he said I have ABSOLUTELY NOTHING to point to it. I even read the letter he wrote to my PCP and he called my thinking about this dellusional. Help give me some advice on how to kick the thinking and any other comments will be very much appreciated!! I am 36 years old and the panic attacks started over another health anxiety issue. I had red blood cells in my urine and thought I had kidney cancer and turned out to be nothing. The panic attacks started then, then the twitching came and then that led to me internet search of "twitching" which led to my convinced belief that I had ALS. Then after I visited the doc I calmed down about that then started to think I had Parkison's. Thanks for any advice and comments!
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Postby uber on May 7th, 2004, 10:23 am

I think everybody on these forums has had some of the symptoms you describe, you have obviously exhausted all the possibilities of nasty diseases via your neuro. Your symptoms dont sound anything like Parkinsons to me...and like I keep telling ppl on these forums, your symptoms are definately not the symptoms of ALS, as fasiculations is not an initial symptom of ALS. Listen to your neuro, he clearly knows what he is talking about...stay in touch on these forums for support.
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welcome

Postby barbo36 on May 7th, 2004, 12:28 pm

Your story sounds alot like mine except I havent seen a neuro. It is awful living with the fear of als.It has really taken me and kicked my ass a few times well everyday almost.Did you get the twitching before panic or did you twitch then panic? Uber is right you sound like alot of people on this board and if your neuro says no als than there is no als. Welcome to the board there are some really knowlegable people here that give good advice. Barb
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response to Barbo36

Postby dont on May 7th, 2004, 1:08 pm

It's a long story but I will share. I had a swollen lymph node in December and was convinced I had Lymphoma. I worried about it for a week, went to doc and was told it was nothing. Then my cat got really sick and we almost had to have him put to sleep but he bounced back. I was really sad all of December about that. On X-mas I developed back pain and thought I had a bladder infection. I went to the doc and she did a dip stick test and found blood in my urine. I asked what it could be and she said possibly a kidney disease and she wanted me to come back on one week for a urinalysis to make sure. I had mild to moderate attacks that following week while I waited to go back. I went back on a Friday to do the test and on the following Monday was told it was nothing and it was probably just menstral blood, however my back would not stop hurting and I had flank pain too. I started looking up flank pain and found horrible things and then my panic attacks continued to get worse and then I started to twitch all over. I had panic 12 years ago and twitched then too but I did not have the net to scare me. I got better much faster but I also had no responsibility then. I was unmarried, lived at home, had a stress free job. Now I'm married, have a two year old and have a stressful job. When I think of the sequence of events it makes sense that this is from the anxiety I have put myself thru but the darn symptoms will not stop and that is why I just cannot seem to accept it is not something terrible. It is so frustrating because I cannot tolerate anti depressants and I feel emotionally numb toward my family, however I know I love them with all my heart. Part of me knows I am being irrational but then the pain, the trembling and the twitching starts and it all comes back that there just has be something they are missing. I do feel an inch better so I guess every little bit of progress helps. I want my old self back and want to love my daughter the way I need to be loving her and the way I know that I truly do love her.
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oh boy

Postby barbo36 on May 7th, 2004, 1:14 pm

you sound so much like me except I had low back pain then a twitch in the stomach then the flank pain. I think I posted my story on the experience board if your interested.It sounds like you have a bit of H A. I do now too. Take care and try and relax and pm me if you feel like it Barb
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Postby Pam on May 7th, 2004, 2:46 pm

We sound a lot alike. I am 32, have been twitching for four months, and my twitching started after a series of medical problems last fall. The medical problems resolved but caused me worry excessively and I became obsessed with my health. My arms and legs started having burning patches that would come and go and bounce from place to place. I was afraid I had MS. My doctor thought it was just anxiety due to my getting slammed with one problem after another. He put me on Zoloft but I quit taking it after only 7 days because it made the burning worse and I couldn't sleep. I saw a neuro, who did an emg, and could find nothing wrong. Then the burning stopped and the twitching started, which made me worry about ALS. I have no weakness and feel pretty good physically. However, mentally, I'm a yo-yo . . . one minute I convince myself that the twitching is just anxiety and the next minute I am scared that I have ALS or some other neuro disease. I too just want to feel like my old self again. Stay strong and please know that you are not alone.
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I just had to respond to you

Postby KimE on May 7th, 2004, 6:16 pm

you sound just like me.

This is going to be long so bear with me, folks. First off before all this my life was really the best it has ever been. Great kids, good marriage, house in the 'burbs, etc.

First I have to give a little background. I had had a few days where I had felt achey. Almost like I was coming down with something but then it would go away. It was very fleeting.

Flash forward. One day, I am sitting waiting for my daughter to get her haircut and I read an article about Pam Anderson and hepatitis C. It hit me like a lightening bolt that I had a long term ex boyfriend (14 years ago) who had liver problems and always had to have his liver functions tested.

The article had a little table that displayed symptoms of Hep C and muscle aches was one of them. Never mind that I didn't even knw if Hep C is what he had, never mind that I had never come into contact with his blood, never mind the fact that I had none of the major symptoms of Hep C. I was sure I had it.

So, I am out of my mind with stress. I am thinking that there is a chance I may have passed this scourge on to my husband and children. I am barely sleeping, barely eating.

I finally get up the nerve to go get tested. I get tested, the test is negative but she tells me I have this thing called a "positive low titer ANA" and to come back in a month to see if it still remains positive and if so she will refer me to a rheumatologist.

I feel better for about a day. I get on the internet and look up positive ANA's. Well, now I am learning about the wonderful world of autoimmune diseases. Lupus, rheumatoid arthritis, etc, etc.

Back into panic mode, but not quite so severe because I am not worried so much about my kids.

At this point, I start waking in the middle of the night with, like, a burning sensation on the fronts of my ankles. Then I would start getting a burning sensation with the slightest bit of exertion (I was a runner and worked out) on the fronts of my quads. Then I would have days where my feet just felt like I had hiked the Himalayas barefoot. And I started getting fleeting muscle twitches.

And about two months later, I am still having these weird symptoms. All neuro tests, so far, normal.

I think something was going wrong before I read the article, and I think the stress certainly did and does not help. But, I don't think it is entirely stress.

Kim
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I just had to respond to you

Postby KimE on May 7th, 2004, 6:19 pm

you sound just like me.

This is going to be long so bear with me, folks. First off before all this my life was really the best it has ever been. Great kids, good marriage, house in the 'burbs, etc.

First I have to give a little background. I had had a few days where I had felt achey. Almost like I was coming down with something but then it would go away. It was very fleeting.

Flash forward. One day, I am sitting waiting for my daughter to get her haircut and I read an article about Pam Anderson and hepatitis C. It hit me like a lightening bolt that I had a long term ex boyfriend (14 years ago) who had liver problems and always had to have his liver functions tested.

The article had a little table that displayed symptoms of Hep C and muscle aches was one of them. Never mind that I didn't even knw if Hep C is what he had, never mind that I had never come into contact with his blood, never mind the fact that I had none of the major symptoms of Hep C. I was sure I had it.

So, I am out of my mind with stress. I am thinking that there is a chance I may have passed this scourge on to my husband and children. I am barely sleeping, barely eating.

I finally get up the nerve to go get tested. I get tested, the test is negative but she tells me I have this thing called a "positive low titer ANA" and to come back in a month to see if it still remains positive and if so she will refer me to a rheumatologist.

I feel better for about a day. I get on the internet and look up positive ANA's. Well, now I am learning about the wonderful world of autoimmune diseases. Lupus, rheumatoid arthritis, etc, etc.

Back into panic mode, but not quite so severe because I am not worried so much about my kids.

At this point, I start waking in the middle of the night with, like, a burning sensation on the fronts of my ankles. Then I would start getting a burning sensation with the slightest bit of exertion (I was a runner and worked out) on the fronts of my quads. Then I would have days where my feet just felt like I had hiked the Himalayas barefoot. And I started getting fleeting muscle twitches.

And about two months later, I am still having these weird symptoms. All neuro tests, so far, normal.

I think something was going wrong before I read the article, and I think the stress certainly did and does not help. But, I don't think it is entirely stress.

Kim
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I just had to respond to you

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