I had a spinal today. Have to wait 4 wks for results. The twitching today is unbearable--every muscle. I am really feeling depressed and scared again. My left arm aches and feels like it's getting weaker (perceived?). All the muscles are smaller in that arm. I am losing my sanity and ability to enjoy life. Why can't I believe I am not dying of you know what? What is wrong with me? Is there anything I can do to change my way of thinking? Of course it didn't help to come home from the hosp and flip on the TV and see a giant photo of a young woman (3rd one I know of) in my area that had the disease. I need help. I'm sorry if I'm sounding so negative and non-helpful to others.
Waiting for Spinal Results - Unbearable Twitching
- Thread starter StephG22
- Start date
StephG22,
I'm sorry that you are suffering so much. I can totally relate, when i look back on the past year of my own life. I can also tell you that it will get better. Time is your best friend, and you should celebrate each passing week/month and know that you don't have anything bad.
The answer to why you can't believe that you don't have something terrible is easy, anxiety. It is a poison so many of us have suffered through, and it will bring you to your knees if it is allowed to continue to brew. I would say to you that the single most important thing you need to do is to find some way to get it under control. Whether that is through medicine, cognitive behavioral therapy or whatever else is out there, don't delay. Take steps immediately to get some help. But don't think it is going to be easy. Anxiety is a devil that fights back every step of the way. If you start anti-anxiety meds I can almost gaurantee that you will have adverse reactions. That's the anxiety struggling to maintain its hold. It doesn't want to die or be beaten, just as much as we don't. So if you try drug therapy, I would advise that you talk with your dr, pick a med, and stick with it, even if it is difficult.
Sorry for being so wordy, but I can feel your pain, and I've been there. I could go on and on, but the bottom line is that you have to find a way to get the anxiety under control. Once that happens, your perception of your problems will change, and you will feel 100% better.
Take it from someone that has already been down that road.
Take care,
Gary
I'm sorry that you are suffering so much. I can totally relate, when i look back on the past year of my own life. I can also tell you that it will get better. Time is your best friend, and you should celebrate each passing week/month and know that you don't have anything bad.
The answer to why you can't believe that you don't have something terrible is easy, anxiety. It is a poison so many of us have suffered through, and it will bring you to your knees if it is allowed to continue to brew. I would say to you that the single most important thing you need to do is to find some way to get it under control. Whether that is through medicine, cognitive behavioral therapy or whatever else is out there, don't delay. Take steps immediately to get some help. But don't think it is going to be easy. Anxiety is a devil that fights back every step of the way. If you start anti-anxiety meds I can almost gaurantee that you will have adverse reactions. That's the anxiety struggling to maintain its hold. It doesn't want to die or be beaten, just as much as we don't. So if you try drug therapy, I would advise that you talk with your dr, pick a med, and stick with it, even if it is difficult.
Sorry for being so wordy, but I can feel your pain, and I've been there. I could go on and on, but the bottom line is that you have to find a way to get the anxiety under control. Once that happens, your perception of your problems will change, and you will feel 100% better.
Take it from someone that has already been down that road.
Take care,
Gary
arizaz2021
Well-known member
StephG22-
You sound hysterical from your message. You have to believe you are going to be fine! No one repy, reassurance, post, or doctors words can/will help you if you refuse to listen and digest the messages you are getting. It is like the story of the Little Engine...you can tell yourself you are ill, or you can tell yourself you have annoying symptoms but you will be okay.
As my priest said, little children are the best example of handling illness because they have the same focus every day. They wake up hopeful, despite what adults may already know about their fate, in some instances. Yet, they live each moment of each day as fully as their situations allow--playing, laughing at volunteer clowns etc.. We should all live with such grace and respect for the gifts we have. Celebrate your good news so far and anticipate a positive in 4 weeks!
I will step off of my soap box, but I know how desperate you are because I have walked a few miles in your shoes already. They kept persuing MS for me because of these terrific headaches I had this past fall. Unbelievable pain, to the point that I just fell apart because nothing touched them. I kept panicing and calling the neurologist and after a bunch of MRI's and a CT scan, all was declared normal(except some disc herniations in the upper neck). Then, the twitching began. The dye that was used in both tests has left me wondering if I had a reaction and if I had just let myself settle down, maybe I would not be in this position.
In any case, you and only you have the complete power to surrender this looming fear you have. You have to use your faith, if you believe, to just release this as many times a day as your fear rears its ugly head.
YOU CAN DO THIS! YOU WOULD NOT SCARE A FRIEND OR EVEN A STRANGER WITH SUCH NEGATIVE MESSAGES; DON'T DO THIS TO YOURSELF!
HUGS AND PRAYERS GOING OUT TO YOU....
ariza_z2021
You sound hysterical from your message. You have to believe you are going to be fine! No one repy, reassurance, post, or doctors words can/will help you if you refuse to listen and digest the messages you are getting. It is like the story of the Little Engine...you can tell yourself you are ill, or you can tell yourself you have annoying symptoms but you will be okay.
As my priest said, little children are the best example of handling illness because they have the same focus every day. They wake up hopeful, despite what adults may already know about their fate, in some instances. Yet, they live each moment of each day as fully as their situations allow--playing, laughing at volunteer clowns etc.. We should all live with such grace and respect for the gifts we have. Celebrate your good news so far and anticipate a positive in 4 weeks!
I will step off of my soap box, but I know how desperate you are because I have walked a few miles in your shoes already. They kept persuing MS for me because of these terrific headaches I had this past fall. Unbelievable pain, to the point that I just fell apart because nothing touched them. I kept panicing and calling the neurologist and after a bunch of MRI's and a CT scan, all was declared normal(except some disc herniations in the upper neck). Then, the twitching began. The dye that was used in both tests has left me wondering if I had a reaction and if I had just let myself settle down, maybe I would not be in this position.
In any case, you and only you have the complete power to surrender this looming fear you have. You have to use your faith, if you believe, to just release this as many times a day as your fear rears its ugly head.
YOU CAN DO THIS! YOU WOULD NOT SCARE A FRIEND OR EVEN A STRANGER WITH SUCH NEGATIVE MESSAGES; DON'T DO THIS TO YOURSELF!
HUGS AND PRAYERS GOING OUT TO YOU....
ariza_z2021
arizaz2021
Well-known member
StephG22
One thing, since I posted Gary snuck a message in too. He is one of my favorite posters as he really is so understanding!
As I read his reply, I wanted to say that I completely agree that medication/therapy may be imperative. I had difficulty with several medications but have had terrific success with wellbutrin. You may need help breaking this cycle. It did take a full 3 weeks and it was tough, however, it is worth it to hang in there. I have a close friend in the mental health field who flat out told me I was getting into an obsessive-compulsive cycle that needed to be broken, immediately.
You are not alone, keep talking to us and be persistent with what you need from your doctors to get things under control.
ariza_z2021
One thing, since I posted Gary snuck a message in too. He is one of my favorite posters as he really is so understanding!
As I read his reply, I wanted to say that I completely agree that medication/therapy may be imperative. I had difficulty with several medications but have had terrific success with wellbutrin. You may need help breaking this cycle. It did take a full 3 weeks and it was tough, however, it is worth it to hang in there. I have a close friend in the mental health field who flat out told me I was getting into an obsessive-compulsive cycle that needed to be broken, immediately.
You are not alone, keep talking to us and be persistent with what you need from your doctors to get things under control.
ariza_z2021
kellysLayla
Member
StephG22 - I know the anxiety of thinking you have "you know what" can be overwhelming. The anxiety can take a hold of you and destroy your life - it destroyed many of my days. Like I have said before, zoloft has helped take away some of the anxiety and kept the tears away. I still think about "it" non-stop, but I'm trying so hard to put it out of my mind. You have your kids to enjoy and your life to enjoy. I wish so much that there was an answer as to why we all twitch!!! You remind me so much of myself. Today, I have felt like my right leg is becoming weak. But, I keep telling myself that my neuro said I was fine and that I did not have to worry. Try to repeat the positive messages you have received from your neuros and look into an anti-anxiety medication. It seems to have helped so many on this forum.
GinniferLynne
Well-known member
StephG22,
I agree with ariza_z2021 and Gary. Since my doc "upped" my Luvox dose (which by the way, was orginially created for OCD, depression and used in a study on hypochondriacs with fantastic results), I feel mentally better----less anxiety. I know if that many people in my area had "that" disease, it would freak me out more than my "Normal" freakouts, too!!!!! (if that makes sense)
I still have my moments, believe me, and I did not want to go on any SSRI. Im sort of a Healthnut (what an understatement), and I absolutely hate taking drugs of any kind unless its a vitamin, anti-oxidant, etc., but taking this drug has saved my life, I swear. As for side effects, I've been lucky so far. I've only experienced a little fatigue, but nothing compared to the fatigue anxiety has caused me.
Now LISTEN----WE ARE HERE FOR YOU, Ok? I'll bet my bottom dollar that you are going to be absolutely fine. I know it's easy for people to sit back and say this that aren't waiting for test results, I know I'd be scared too, but I still say you're going to be ok.
Prayers and good vibes coming your way!!!!!!
)
I agree with ariza_z2021 and Gary. Since my doc "upped" my Luvox dose (which by the way, was orginially created for OCD, depression and used in a study on hypochondriacs with fantastic results), I feel mentally better----less anxiety. I know if that many people in my area had "that" disease, it would freak me out more than my "Normal" freakouts, too!!!!! (if that makes sense)
I still have my moments, believe me, and I did not want to go on any SSRI. Im sort of a Healthnut (what an understatement), and I absolutely hate taking drugs of any kind unless its a vitamin, anti-oxidant, etc., but taking this drug has saved my life, I swear. As for side effects, I've been lucky so far. I've only experienced a little fatigue, but nothing compared to the fatigue anxiety has caused me.
Now LISTEN----WE ARE HERE FOR YOU, Ok? I'll bet my bottom dollar that you are going to be absolutely fine. I know it's easy for people to sit back and say this that aren't waiting for test results, I know I'd be scared too, but I still say you're going to be ok.
Prayers and good vibes coming your way!!!!!!
)Thank you all so much. You are the only real support I have. My husband can't understand or tolerate this. I feel so weak and shaky today (twitchy too). Could it be from the spinal? I feel it's difficult to do anything at all and will probably spend the rest of the day in bed. I had a bad reaction to an SSRI so I am too afraid to try another. My focus seems to be shifted towards possible weakness. My weight loss makes me look atrophied. This gloomy weather is not helping.
Thanks. Don't worry I do not take that the wrong way. You are a big help. Hopefully I will get out of this rut soon! Maybe I feel weak because yesterday they took 7 tubes of spinal fluid & 7 tubes of blood from me and I was very anxious about it then depressed after hearing I won't get results for 4 wks. I really need to get a grip and snap out of this. I wish the twitching weren't so constant! One question--on your feet how do you tell if it's twitching or tingling if you don't see it? Sounds silly I know.
usysparawl
Well-known member
StephG22,
Try to stay positive. Also, I think that three young women in your area with ALS is a total unlucky fluke. The odds are 1-2 in 100,000. Men more than women, mostly age 55 and older. Just keep reminding yourself of those stats. I live in a city of about 400,000, so we can't have more than 4-8 people here!!! I know ALOT of people, big network of friends, and I have only heard of 3 people with it (locally) my entire life. All men, and two of them were over age 55.
ALS IS RARE. The stats are in your favor.
Peg
Try to stay positive. Also, I think that three young women in your area with ALS is a total unlucky fluke. The odds are 1-2 in 100,000. Men more than women, mostly age 55 and older. Just keep reminding yourself of those stats. I live in a city of about 400,000, so we can't have more than 4-8 people here!!! I know ALOT of people, big network of friends, and I have only heard of 3 people with it (locally) my entire life. All men, and two of them were over age 55.
ALS IS RARE. The stats are in your favor.
Peg
StephG22,
I really can't tell you how to differentiate between twitching and tingling if it's not visible. I personally get both, but for me it is a completely different sensation.
Also, don't worry about continuous twitching. It isn't indicative of anything bad. Happens to people with BFS all the time.
Take care,
Gary
I really can't tell you how to differentiate between twitching and tingling if it's not visible. I personally get both, but for me it is a completely different sensation.
Also, don't worry about continuous twitching. It isn't indicative of anything bad. Happens to people with BFS all the time.
Take care,
Gary
Pixeldusty
Well-known member
Hugs to you StephG22. That's a lot you have been going through. You had blood and fluids drawn. Make sure you replenish it with plenty of water/liquids. Lack of fluids will make you feel horrible, sets the nervous system off. I fight the same feelings too. Just have to try to find that little bit in you that really does believe nothing is wrong and hold on to it.
There are days you fall back into that hole like 1 step forward and 3 back!!, but the positive days should start to be more and more. I feel shaky most days, especially my arms, if I start to go down the dark roadI stop myself before I go to far. I have skinny arms that look like sticks, I've lost weight also and have even measured my arms, calves etc. Everything twitches and for me this has all been going on for 3 months, while I know others here have had it for months and years. They are the voices of experience! As far as having 3 people in your area that have it, when you worry about something it's seems like when you walk into a store you see a sign about it, or see a commercial about it. It happens to me all the time. I went into CVS and saw they were collecting money to help support research for als. Of course I took this as an ominous sign at the time and I have anxiety for many, many years. (my poor hubby, how he sticks it out I don't know!)..lol.
Hang in there, you'll be fine!
You're fine and will get through this.
There are days you fall back into that hole like 1 step forward and 3 back!!, but the positive days should start to be more and more. I feel shaky most days, especially my arms, if I start to go down the dark roadI stop myself before I go to far. I have skinny arms that look like sticks, I've lost weight also and have even measured my arms, calves etc. Everything twitches and for me this has all been going on for 3 months, while I know others here have had it for months and years. They are the voices of experience! As far as having 3 people in your area that have it, when you worry about something it's seems like when you walk into a store you see a sign about it, or see a commercial about it. It happens to me all the time. I went into CVS and saw they were collecting money to help support research for als. Of course I took this as an ominous sign at the time and I have anxiety for many, many years. (my poor hubby, how he sticks it out I don't know!)..lol.
Hang in there, you'll be fine!
You're fine and will get through this.
arizaz2021
Well-known member
Hey StephG22-
I hope tonight is a little better for you. I remember just going out on the patio was a huge accomplishment. I really thought I was developing agorophobia as I would not even go to dinner with my husband or leave the house. Going to the doctor and home was huge back last fall. Now, with a little yellow pill, I go everywhere and need to remind myself to slow down some days! I really wondered if I was losing my mind entirely.
From the sounds of it you SHOULD be tired after all of the tests. Keep in mind, it is virtually "fact" from all accounts on this forum, that stress does increase the twitching. My twitching was at its very WORST after surgery and just before my last set of EMG's. I counted anywhere from 50 on upwards of popcorn twitches in a minute!!!! It was awful... but, now I would say I might go hours before I even notice a twitch. Today my leg was buzzing in a new spot, while the lower left leg still tingles constantly.
Dande is right on about what you notice. I was at a laundermat and they had on a professional golf tournament. It seemed benign enough until they spoke of Tom Watson's caddy who had been stricken with "it". They did an entire story on him. Then, Reader's Digest had a story on a man who contracted it. A book was recommended to me and the opening story was about a man with "it". I thought, to myself, Good Lord, why does this keep smacking me right in the face when I am already so fearful? But, when you stop to think about it, imagine how many times we have heard stories about cancer, or aids, or diabetes, but that does not mean there is any sign that we have those illnesses. We focus in on points of relativity. This is relevant to our fears, so we take in that information with a different line of reception.
Four weeks can blast by, or it can drag on and on. Try to fill your time with things that will allow you to drink in your good health, despite a few glitches, and then be sure to plan to celebrate the good news when it arrives!!!
ariza_z2021
PS. sometimes they tell you the longest time it could possibly take for results. It might be that you get your good news even sooner than expected.
I hope tonight is a little better for you. I remember just going out on the patio was a huge accomplishment. I really thought I was developing agorophobia as I would not even go to dinner with my husband or leave the house. Going to the doctor and home was huge back last fall. Now, with a little yellow pill, I go everywhere and need to remind myself to slow down some days! I really wondered if I was losing my mind entirely.
From the sounds of it you SHOULD be tired after all of the tests. Keep in mind, it is virtually "fact" from all accounts on this forum, that stress does increase the twitching. My twitching was at its very WORST after surgery and just before my last set of EMG's. I counted anywhere from 50 on upwards of popcorn twitches in a minute!!!! It was awful... but, now I would say I might go hours before I even notice a twitch. Today my leg was buzzing in a new spot, while the lower left leg still tingles constantly.
Dande is right on about what you notice. I was at a laundermat and they had on a professional golf tournament. It seemed benign enough until they spoke of Tom Watson's caddy who had been stricken with "it". They did an entire story on him. Then, Reader's Digest had a story on a man who contracted it. A book was recommended to me and the opening story was about a man with "it". I thought, to myself, Good Lord, why does this keep smacking me right in the face when I am already so fearful? But, when you stop to think about it, imagine how many times we have heard stories about cancer, or aids, or diabetes, but that does not mean there is any sign that we have those illnesses. We focus in on points of relativity. This is relevant to our fears, so we take in that information with a different line of reception.
Four weeks can blast by, or it can drag on and on. Try to fill your time with things that will allow you to drink in your good health, despite a few glitches, and then be sure to plan to celebrate the good news when it arrives!!!
ariza_z2021
PS. sometimes they tell you the longest time it could possibly take for results. It might be that you get your good news even sooner than expected.
Thank you for all your kind and helpful words. I couldn't stay in bed long today because my cat stuffed herself and then vomited all over my bed-sheets, blankets & all. That got me up quick. I feel a little better after reading what you guys have had to say. It's so comforting knowing I'm not alone in this.
tearsneverfall
Well-known member
StephG22,
I would call the neurologist and tell them that you are very upset about the results and you want to find out if there is any way possible if you can get the results back before that. I know an MRI is different but when I registered for MRI I was told it would 4 business days for my results. After I had it I told the tech I was having panic attacks and wanted my results ASAP and I had them by 4 that afternoon. I don't know much about spinals and maybe they do take that long because the fluid is put through a series of tests BUT that still seems like an awful long time and I would call your doctor and find out if it can be done sooner.
Also I know what you mean about seeing it everywhere when you are worried about it. After I read Jenifer Estess story I kept seeing semi Trucks with Big E's on the and lo and behold guess what the side of the trucks said??? Estess trucking. Then I kept seeing license plates that had MS letters in them and MRI and things like that that I know I would have not given a second though to if I weren't worried about ALS. I even was out of town and got lost and had to turn around and when I did I got behind a min van that had a bumper sticker on it that said "What is ALS? It can make you speechless." I sat there and cried my eyes out at that red light.
Like ariza_z2021 said we hear cancer commercials, diabetes commercials etc.. constantly. Every commercial break has a drug advertised that is for some disease or another and I pay no attention to them unless it's my disease of the week!
I am praying for you and your kids!
Keep us posted and take care!
I would call the neurologist and tell them that you are very upset about the results and you want to find out if there is any way possible if you can get the results back before that. I know an MRI is different but when I registered for MRI I was told it would 4 business days for my results. After I had it I told the tech I was having panic attacks and wanted my results ASAP and I had them by 4 that afternoon. I don't know much about spinals and maybe they do take that long because the fluid is put through a series of tests BUT that still seems like an awful long time and I would call your doctor and find out if it can be done sooner.
Also I know what you mean about seeing it everywhere when you are worried about it. After I read Jenifer Estess story I kept seeing semi Trucks with Big E's on the and lo and behold guess what the side of the trucks said??? Estess trucking. Then I kept seeing license plates that had MS letters in them and MRI and things like that that I know I would have not given a second though to if I weren't worried about ALS. I even was out of town and got lost and had to turn around and when I did I got behind a min van that had a bumper sticker on it that said "What is ALS? It can make you speechless." I sat there and cried my eyes out at that red light.
Like ariza_z2021 said we hear cancer commercials, diabetes commercials etc.. constantly. Every commercial break has a drug advertised that is for some disease or another and I pay no attention to them unless it's my disease of the week!
I am praying for you and your kids!
Keep us posted and take care!
I am going to keep bugging them untill I get my results! They don't take long to do but if they have high volume they can get backed up. It is true that you just notice things that you are worried about. I am afraid to read anything anymore and will have my mother read my magazines first to get rid of articles containg you know what. Well, I now have an excruciating headache from my spinal and have to lay down. I will keep you updated!
arizaz2021
Well-known member
StephG22=
This has nothing to do with what we are discussing but it should make you laugh. A comedian says that the perfect alarm clock would be of that urping noise you hear when a child or pet is going to throw up right next to you in bed. He says there would be no hitting the snooze button with that one! Ain't that the truth!!!
I can only imagine how fast your feet and aching back hit the floor when your cat had a moment today! Too bad overeating didn't have that effect on me. Maybe I wouldn't do it with my favorite foods!
I think the fluids idea is a good one for you. Can you take tylenol or something? I remember a headache with my epidural.
talk to you soon,
ariza_z2021
This has nothing to do with what we are discussing but it should make you laugh. A comedian says that the perfect alarm clock would be of that urping noise you hear when a child or pet is going to throw up right next to you in bed. He says there would be no hitting the snooze button with that one! Ain't that the truth!!!
I can only imagine how fast your feet and aching back hit the floor when your cat had a moment today! Too bad overeating didn't have that effect on me. Maybe I wouldn't do it with my favorite foods!
I think the fluids idea is a good one for you. Can you take tylenol or something? I remember a headache with my epidural.
talk to you soon,
ariza_z2021
usysparawl
Well-known member
Also I know what you mean about seeing it everywhere when you are worried about it. After I read Jenifer Estess story I kept seeing semi Trucks with Big E's on the and lo and behold guess what the side of the trucks said??? Estess trucking. Then I kept seeing license plates that had MS letters in them and MRI and things like that that I know I would have not given a second though to if I weren't worried about ALS. I even was out of town and got lost and had to turn around and when I did I got behind a min van that had a bumper sticker on it that said "What is ALS? It can make you speechless." I sat there and cried my eyes out at that red light.
Funny you should mention this. We shop at Petco and the name of their discount club is P.A.L.S.
And this is even funnier . . . my last shrink's name was J. Estess and I accidentally called her Jennifer Estess one day.
Peg
Funny you should mention this. We shop at Petco and the name of their discount club is P.A.L.S.
And this is even funnier . . . my last shrink's name was J. Estess and I accidentally called her Jennifer Estess one day.
Peg
GinniferLynne
Well-known member
Peg,
That is too funny calling your shrink the wrong name.
I also shop at Petco, I freaked one day when I looked into my wallet and found my P.A.L.S. card. Thought it was an "omen" of some type.
Sometimes, you just gotta laugh.
That is too funny calling your shrink the wrong name.
I also shop at Petco, I freaked one day when I looked into my wallet and found my P.A.L.S. card. Thought it was an "omen" of some type.
Sometimes, you just gotta laugh.